Cure Brianna Sharp

Holiday Cards Supporting Children With Brain Cancer - Oct. 17, 2009

2009-10-19T08:42:00.001-07:00

From Angel Brianna's family:
Please post the announcement on your websites / facebook / email / everywhere!
A piece of Brianna's artwork is included in a set of Christmas cards through The Cure Starts Now. Last year she made a painting for Matt. The scene is a blue background with a snowman and Christmas tree. Other children also contributed artwork for this cause...please consider ordering your holiday cards through this organization and help fight pediatric brain cancer at the same time! Contact information is listed below and you will find an order form on the site.
Twelve wonderful kids helped us to create an amazing assortment for the Cure Starts Now holiday cards this year . All of these brave kids have battled, or are currently battling brain cancer. Help us honor them, and all children fighting brain cancer, by purchasing these holiday cards. Each pack includes 15 cards (5x7 size) with one of each of the designs. The inside includes a message "May the spirit of the holidays bring you hope and happiness." Envelopes lined with silver foil are included. Proceeds go directly towards The Cure Starts Now which helps families battling brain cancer and funds pediatric brain cancer research. Know of a business who would like to use a customized version of the cards? Please have them contact us at cards@thecurestartsnow.org . Interested in selling these for us? Please email us at groupsales@thecurestartsnow.org . Help a worthy cause and spread holiday cheer! Go to www.thecurestartsnow.org and click on Holiday Cards.
Thank you so much for your support!! We are so proud of Brianna's artwork and hope you wil enjoy sharing it with others!

Needed Prayers & Best Wishes - Oct. 16, 2009

2009-10-19T08:40:00.000-07:00

From Angel Brianna's Family:
Kaitlyn has a very rough time last week as she learned that one of her good friends (Emma Novotny)had a mother who was suffering from brain cancer and was not likely to make it past the weekend. Emma's mother Sue passed away last Saturday. Emma and Kaitlyn have become very close as they each share a tragic loss. Please pray for Emma, her dad, and little brother during this difficult time.
Also, Brianna had a very dear friend, Katrina Gerber. Katrina, her sister Molly (sophomore), and their family just learned that their cousin was diagnosed with salivary gland cancer. The Gerber family are absolutely amazing and have shown so much love and support for Brianna and our family. We would like to ask for your prayers so that their cousin Jessica McNamara can remain strong and win her battle against cancer! Please feel free to follow Jessica's journey through the carepage site set up by Molly: click on the link below, or cut and paste it in your browser.
http://www.carepages.com/carepages/JessicaMcNamara
Molly Gerber is on the Neuqua Valley swimteam and competed last night in the Passionately Pink Swim Meet. She decorated her pink swim cap in memory of Brianna, Emma's mom Sue, and also in support of her cousin Jessica. Molly informed me today that Brianna and her motto inspired her to "finish strong," which she did by beating her personal bests!! AWESOME job Molly, we are so touched by the wonderful way you honored Brianna's memory.
Finally, Brianna's friends from Gregory Middle Schools cross country team will be running in the Naperville Conference meet on Tuesday, October 20th. We know Brianna will be there in spirit, cheering them on to victory, and reminding them to "finish fast, and finish strong!" If anyone who lives in the area would like to cheer them on in person, the race will be held at the DuPage River Park. If you have a Brianna's Brigade shirt and wear it to the meet, I know the team will beat their best times!! Best of luck ladies, you have a lot of people cheering you on to victory!
Best of Luck and God Bless!!
Angel Brianna's Family

Finding Hope When You Feel Hopeless - Sept. 29, 2009

2009-09-30T07:26:00.000-07:00

One year ago today I rushed Brianna to Edward Hospital (September 28th, 2008) as she was crying and screaming from a headache, a headache that became increasingly severe over the past few weeks and left her with little to no relief. On Sunday evening last year we finally decided this is not a normal headache. Brianna underwent a CT scan and the end result was good news, “looks good.” The diagnosis was severe migraines (family history) likely brought on by certain triggers so we would have to keep a diary to figure out what sets off her headaches. Brianna could find no relief from any remedy and was now waking up in the middle of the night screaming and now vomiting. Brianna said to me, “Why can’t they figure out what’s wrong with me? Something’s wrong, this pain is so bad I can’t take it anymore!”
The only symptom Brianna experienced was very severe headaches. Looking back, I also remember her snapping at me with a look of anger. This was NOT Brianna speaking, it was not in her nature and she frightened me with this change in behavior/attitude. The morning of Saturday, October 4th, 2008, Brianna was diagnosed with DIPG after Central DuPage Hospital did an MRI. Her tumor was much larger than others with this type of tumor. Her tumor was also pressing on the Medulla Oblongata, which explains the anger and aggressiveness we witnessed over the past couple of weeks. My advice to parents is to always go with your gut, listen to your kids, and push doctors for more tests and answers if something doesn’t seem right. Central DuPage was going to send us home Friday night confirming Edward’s diagnosis, but I asked what else they could do, are there any other tests? I think they only admitted us because it was approaching midnight…I can’t imagine what we would have done if we were sent home. Now, with the anniversary of the diagnosis approaching, we still find ourselves living in a surreal world and wonder, “Where did the past year go?”
Last August (2008), Bob and I had a discussion wondering how to break the news to our kids… great-grandma had lung cancer. The doctors would do radiation therapy, but decided she would not be able to tolerate chemotherapy. Given grandma’s age and health the news was not a surprise, but cancer was not something our family had experienced. We didn’t even know if we should use the “C” word because we did not want the children to be afraid. We explained that many years ago cancer was a scary word and left little hope for individuals and families, but now people are winning their cancer battles every day. We told the kids they could pray for great-grandma while she goes through treatment, but also talked about how blessed great-grandma was to be married for 67 years, have three children, six grandchildren, and ten great-grandchildren. We told the kids that even if great-grandma got really sick, it’s comforting to know she would have lived a very long, blessed life.
Who would have believed that less than two months later we would have to find a way to tell our 12 year old daughter that she herself, had cancer. This was an altogether different story. Brianna’s type of cancer had a very grim prognosis and left us in disbelief. A surreal experience which leaves parents lost in an inescapable nightmare for an indefinite period of time. The doctor told us there’s no effective treatment and our only option would be six weeks of radiation therapy to shrink the tumor, and it would only be a matter of time before it would come back with a vengeance. The doctor left us feeling helpless. The doctors words (“There’s no effective treatment,” “It’s only a matter of time,” etc.) was impossible to absorb, much less accept when they are talking about your child! He may have left us feeling helpless, but it was up to us to look deep within and find the strength and courage to fight not only a physical battle, but also an emotional and spiritual battle as well.
I will never forget the discussion with Bob, Matt, and Maria about how to tell Brianna. “Should we use the “C” word?” “Don’t say anything about the statistics!” “Tell her we will be seeing a lot of doctors…” “Let her know she is getting medicine to help her headaches feel better, but she might feel a little worse before she feels better.” We were all shocked, then relieved that she took the news better than expected. Eighteen months, maybe two years, “That’s long enough for a miracle!” we told ourselves. As we began making our calls to break the news, all we asked was for people to pray for a miracle healing, and in the meantime we are going to do whatever we can to fight this battle. Matt and I, along with numerous family and friends, began immediate research deciding that we were NOT going to be told there is no hope, BUT…how do you find hope when you are feeling hopeless?My faith has been tested many times, but losing a young child is a test no one should ever have to be put through. I lost my dad when he passed unexpectedly (I was 13) and faced a serious illness (staph infection) where I could have lost my life. My right leg was paralyzed and I experienced excruciating pain, though after Brianna’s experience I have a new scale for measuring pain. I’m a total wimp compared to Brianna!! I remember how Bob, Brianna, Kaitlyn, and many other family members helped me through pain I never thought was possible. I fought a 3-4 month battle, but completely recovered and gained a new perspective on life. It was a huge sigh of relief to know I would be around for my kids as my biggest fear was leaving them too soon. I dreamed of a life like my grandparents and looked to them as a model, praying that I could have been just as blessed in my life.
What a remarkable life to be able to celebrate a 68th wedding anniversary! It’s truly a blessed life when you live to see all of your children raise their families, BUT to be blessed to witness your grandchildren raise their families, “What a wonderful life!” Leaving three generations with many years of fond memories is remarkable. Great-grandma’s house was almost a daily event in the summers. Swimming, baking, shopping, walking to parks…ranging from age 22 down to 7 years old, she experienced so many joyous celebrations.
One evening this past spring, Brianna told me she had, “a face to face conversation with God.” She said, “God told me to be close to great-grandma and great-grandpa.” She was often more concerned about great-grandma than herself. She always focused on how others felt and often apologized to us for having to watch her battle cancer. I believe Brianna, who was once the biggest drama queen, built an unbelievable tolerance for pain knowing that when she suffered we suffered. Brianna would apologize to us for having to watch her suffer in pain and we could do nothing to take it away! As Brianna battled cancer along with her great-grandma, and as hard as it was to watch my grandparents kiss my daughter good-bye, I try to remind myself that it must all be part of God’s plan.
Brianna passed on July 25th, 2009 and was reunited with her great-grandma on September 14th, 2009. Great -grandma lost her battle to lung cancer late that afternoon. It is difficult to endure the loss of two people you love and care for so deeply, but we find comfort knowing they are together watching over us, no longer in pain, and finally at peace.Both Brianna and Grandma declined rapidly. After Brianna died, grandma would kiss Brianna’s picture every night before bed. She told us how Brianna was visiting her and even touched her arm one night. When grandma passed away I felt an overwhelming sense of peace because I knew Brianna was there to greet her and they were both over their pain and suffering. My grandmother loved all of her children, grand-children and great-grandchildren so much, that God made sure she had one of each to greet her in Heaven! My dad was considered a son and surely he greeted her with his typical line, “So where did you leave your broom?” My cousin Scott and Brianna must have greeted her with their big hugs and beautiful smiles.
Again, I did not want to relive the memeories of last year's diagnosis, but hopefully share another part of Brianna’s journey and let everyone know how we are doing 2 months after Brianna's passing. I know a lot of people were not part of our journey from beginning to end, so as we approach the one year anniversary of Brianna’s diagnosis (shockingly surreal that Brianna is no longer with us), we wonder how we ever found hope when feeling hopeless. People continue to tell us how our journey has changed their lives. Some say they have no idea how they would handle a similar situation and are amazed/inspired by our strength and courage (Which came from all of your encouragement and continued support). However, when you are put in a situation where your child’s life is on the line and doctors are leaving you feeling hopeless, remind yourself to have faith in God’s ability to heal and know His plan is perfect …our faith allowed us to find hope when we felt hopeless. We now find hope and peace in the knowledge that by sharing our story Brianna inspired people to fight pediatric cancer, deepen their faith, and count their blessings more than ever!!
God Bless You All!
Jennifer (Angel Brianna's Mom)

Remembering Brianna... in Her Dad's Words - Sept. 1

2009-09-01T11:34:00.000-07:00

From Brianna's Father Matt:
It's been a while since I have posted an update and Jennifer has done such a remarkable job writing that I felt it was best to have her handle the writing duties, but I wanted to just include my words about Brianna from what I spoke at the beginning of the eulogy.
Losing Brianna has definitely become the single most difficult thing I have had to endure and to be quite honest it makes most other day to day problems seem quite trivial in comparison. She brought a lot of joy to all those who met her and I only wish that her youngest sister Gianna got more time to spend with her. Gianna says good night to Brianna every evening as she goes to bed and tells her she loves her.
Seeing Kaitlyn's growth as a person over this last year has been remarkable. Her caregiving of Brianna was really something to see. I am glad that Kaitlyn will be able to share stories of Brianna with Gianna so that she will be able to remember and know more about her oldest sister. As her parents and step-parents we are really proud of Kaitlyn and will look forward to seeing her grow into an exceptional young lady.
The difficulty of dealing with Brianna's loss is just beginning but it will really hit home even more as we get into the various milestones (anniversary of her diagnosis, first Thanksgiving and Christmas without Brianna, what would have been her 14th birthday, anniversary of her passing). It's difficult to comprehend the fact that all the hopes and dreams that we had for her won't come true.
We can't begin to thank everyone for their kind thoughts and deeds that they have done for all of us through this ordeal. I wish I could express to you how comforting you all have been. Just know that it will never be forgotten.
Now I will include the words that I spoke at the beginning of the visitation and wake.
"Brianna was a beautiful, bright, intelligent young woman that gave all of us so many great memories to carry with us for the rest of our days. Brianna’s strength and resilience is something that did not go unnoticed as she was growing into the young woman that she was becoming and held strong until her last breath on this earth.
As parents we are charged with the responsibility of teaching our children right and wrong, good and bad, and yet I found myself learning more from this gentle and quiet spoken young woman than I ever would have imagined. Strength and resilience are traits are usually handed down from parent to child but in this case it was the other way around.
Many of you have had the chance to look over Brianna’s artwork and can see the grace and creativity that she had and it shows through her art. That was most certainly a trait that she didn’t get handed down from me as it was her mother that was the artist.
Brianna’s battle against her cancer made me even more proud of her than I already was but it is not the last nine months that I will remember her most for. I will remember her most for her gentle and kind generosity to absolutely everyone she met. Her ability to make me smile and laugh with her many pointless stories (and I believe she might have gotten that trait from me!) or her attempts at telling me a joke when she would forget the punch line in the end. Not really what you would expect from someone with the last name of Sharp!
I can’t even count how many times when she was really little when she would say “Knock Knock!” and I would say “ who is there!?” and she would say…. Wait a minute let me try and remember! Brianna wanted so much to crack jokes just like her Uncle Dave and Uncle Jeff but couldn’t quite seem to catch on.
I look back on my time with Brianna and I am grateful that God chose Jennifer and I to be her parents. I will do my best to remember the lessons of strength and courage that I learned from her as I live out the rest of my days here in earth. And I will not take for granted one moment of my time with anyone as I have learned that it can be taken away anytime, anywhere and even without any warning.
Brianna was blessed to have many family and friends and it has comforted us to hear how she has touched so many lives in so many ways. We would like to thank you for coming to help us celebrate a life filled with a lot of love, laughter and so much positive attitude. We all have a lot to learn from her and I hope as time goes on that we can make her proud to have us as her parents.
I received many wishes of condolence and support of the past few days but it is one post I received on Facebook that really made me smile…
“Perhaps they are not the stars, but rather openings in Heaven where the love of our lost ones shines down to let us know they are with us”
I have found myself looking up at those very starts every night ever since her passing and smile.
I love you so much Brianna and I will miss you. You have been and always will be my bright shining star.
From your dad, Matt

Back to School - August 26, 2009

2009-08-27T06:21:00.000-07:00

From Brianna's mom Jennifer:
Kaitlyn started middle school (6th grade) last week and she loves it! She handled the first day just fine while I was the one wishing the girls would have had at least 1 more bus ride together. Brianna's friends (8th graders) have taken Kaitlyn under their wings and made it a smooth transition. Kaitlyn was so excited she packed, unpacked, and repacked her bag several times. She also surprised me with her three year plan...FOR DATING IN MIDDLE SCHOOL!!! Something tells me that the first phone call I receive from her school will be discipline related (nothing too terrible---my bet is on cell phone or talking in class), especially considering that my first "non-scheduled" parent/teacher conference happened when Kaitlyn was 3 years old. She refused to take a nap so instead she was supposed to sit quietly and was given a book. When the teacher told me, "Kaitlyn had a bad day," she proceeded to show me a book with every page ripped out! In elementary school, I received a call that Kaitlyn and another student were not getting along. I told Kaitlyn to write a letter of apology to the other student, but when I read the letter Kaitlyn said, "even though you made me very mad," putting the blame back on the other student! Ugh... Kaitlyn is the complete opposite of Brianna. Loud/Quiet, Hyper/Calm, etc. Even when Brianna was very sick she would make people laugh by stating, "Kaitlyn has issues!"
I told Kaitlyn that Bob and I know EVERYONE at Gregory M.S. and will know everything that goes on...she has no idea just how many people are keeping tabs on her to make sure she is o.k. On the first day of school, I recieved a couple of text messages letting me know she was doing great. Being the youngest of four to go through Gregory, we know almost every staff member at Gregory.
Kyle Porter filmed the last segment of the "Brianna's Battle" news story last week. WCIU-Chicago will be airing the story in September/October, but I will post a link for all to view as soon as Kyle finishes the final product. Though we hoped and prayed for a different ending, we are so grateful to have had the opportunity to work with Kyle as his compassion and professionalism left us with a precious keepsake, one we can watch over and over. It is wonderful to hear her voice and her laugh.
Hopefully, her story will help build DIPG awareness. A pediatric cancer with a horrible prognosis where doctors remind parents there is no hope. Finding hope in a "hopeless" situation is hard enough without the added knowledge that time is very limited. We were hoping to be the 1 out of 10 to live at least 18-24 months. Never would we have imagined that our time would be limited to just over 9 months. We need a breakthrough, even if it's only to give families a longer "honeymoon" period.
The first day of school was a difficult one and we will be facing many more difficult days as we near the anniversary of the diagnosis date. This date is in the back of my mind as I mourn our loss, return to work, help Kaitlyn adjust to middle school, & my grandmother's health (she is now on hospice and we are blessed to have Nurse Jane taking care of her.) There are numerous other things to worry about and my ability to compartmentalize and multi-task are lacking...the stress has caused me to break out with shingles!! It's a mild case but still enough to make me crazy!
We continue to pray for those battling DIPG and other illnesses. We are grateful and ver blessed to have your continued support. Please support the families currently fighting this battle by visiting their carepages/caringbridge sites. For every message we received we gained strength and courage to continue the fight. Brianna was amazed when I told her how many people were praying for he. I took time to read many cards to her and a majority started with, "You don't know us, but..." and included, "You are such an inspiration and amaze us with your strong will and deep faith...." It must have been a huge comfort to her as I read those cards when she was bedridden. Thank you everyone for letting Brianna know she made a difference in so many lives!

Brianna Tribute Video - August 15

2009-08-17T07:29:00.001-07:00

Please cut and paste the youtube link (at the end of this update) into your browser bar in order to view a tribute video for Brianna. A 17 year old girl from the U.K. made the video along with hundreds of other videos for DIPG, pediatric cancer, memorials/tributes. Stories that have happy and sad endings, but also shows hope and a desire to build awareness. If you go to www.youtube.com you can type her name in the search box. "lilliesha" and video many more videos. After viewing Brianna's video you can click on the creator's name and go to her other videos.
One in particular sends a strong message about DIPG. It states facts and statistics and also shows numerous angels and each one looks like the other. Cancer kids are not just children with bald heads! Watch the video and know we are desperate to have doctors help find way for children to avoid the negative effects of steriods! I would have taken Brianna with a bald head, just to have any other type of cancer because almost every other pediatric cancer at least gives you better odds.
I remember listening to some other parents stories during a prayer service at the Ronald McDonald House. Listening to the parents say doctors say she has a 95% chance, 50/50, 30% chance.....then they came to me and I said Brianna has a 1 in 10 chance of living past 18 months and survival is not likely...I was there to pray for a miracle! I felt terrible looking at the hand prints on the walls of the Ronald McDonald House, just wishing Brianna could have any other type of cancer listed on the walls. We also tried to keep her from looking at the hands labeled DIPG as they were not going to help Brianna keep the faith.I told doctors to do everything they could to at least give us the 2 years we "might" get...never, ever would I have thought we wouldn't even get a year. I wanted her to ride the bus to middle school with Kaitlyn because they both talked about being excited to go to the same school together again. Plus, Bob and I were looking forward to the three girls all being in school together (Brianna 8th, Haley 7th, Kaitlyn 6th). Haley and Kaitlyn will return to school on Thursday...wi'thout Brianna. Please pray for them to adjust well to returning to school and their normal routines.
I will return to school/work this Monday. I know I will have a very strong support system in place. I hope that work proves to be theraputic and gets me back to feeling "normal." The last 10 months feels like it took a lifetime, but I also find my myself asking, "Where did the time go?" It seems like we just blinked our eyes and Brianna is gone. I don't know if anyone can relate to this feeling, but certainly those who have had shared this journey with us can have some sense of the feeling I am trying to express.
We hope you view Brianna's video and others produced by "lilliesha" on www.youtube.com
Brianna's Tribute Video:

http://www.youtube.com/watch?v=1s7V3ULFFJg

GOD BLESS YOU ALL!

In Bob's Words - Brianna Remembered - August 7

2009-08-10T06:53:00.000-07:00

Good morning...for those of you who do not know me, I’m Brianna’s step dad, Bob. In my time I have given many speeches and presentations, but I have never had to do one on such a personal level so I too ask that you bear with me. I’m not as eloquent of a writer as Jen, but I hope I can covey how the both of us feel here today.
We would first like to thank all of Brianna’s friends, our friends and our community for your unyielding support during our journey. From cards, to gifts to meals, phone calls and just chit chat out front…your actions and words of comfort gave us the strength to go on and has restored our faith in humanity. We stand before you humbled individuals.
To the medical community we say thank you. Your never ending pursuit of Brianna’s well being will always be remembered and appreciated. Your professionalism and care make you all very special caregivers to us.
To Brianna’s dad, Matt, we say thank you. After Bri’s diagnosis, you became our “minister of research.” We were always informed and knew that we could ask you a question and get a solid answer…good or bad. Your love for Bri showed and she loved you…and always will.
To our family…thank you from the bottom of our hearts. From the first day of Brianna’s diagnosis you have been there with your enduring and unwavering love and support. Know how much that has meant to us and Brianna. She was always amazed with the love and support received due to her!
To all of Brianna’s siblings…Kaitlyn, Eric, Haley, Zachary, Madison and Gianna… know that Brianna is in a much better place and is no longer in pain. Though she is not with us in the physical sense, she is always with us in our thoughts and prayers and will live forever in our hearts. Know that she loved each and everyone of you so much.
To Jen…what can I say? A women of unbelievable character and love. A woman with a laugh that warms my heart every time I hear it. You have redefined the word “mom” in many books. Your un-relentless ability to care for Bri 24/7, maintain your composure and be her rock was just amazing. You have touched so many lives with your eloquent words and yourself, brought peace and happiness into this world without even knowing it. Bri loved you so much that she had to make sure you were going to be ok. This was a promise I made to her. Once she knew this, I believe she found peace. You will forever share an unbreakable bond, an unbreakable love with Brianna. Know she loved you with her every fiber and will be with you always.
Today we send our angel back to Heaven. Brianna was destined for greatness with God. Brianna was always the first to offer a hug, offer to help or just give you attention…whether you wanted it or not! She had a beautiful smile, a wonderful laugh and the most subtle rose colored cheeks. Brianna was a story teller, sometimes telling stories that would never seem to end. When Brianna would be telling on of these stories, I would chime in with my standard “land the plane Bri”. I can just see her now talking with God and God turning to her saying…”land the plane Bri”.
Brianna was also a very loving child. Always with a hug and a kiss, always saying good morning and good night. Over the last month or so of her journey I loved helping her get out of bed and tell her this was my favorite part because I knew I was going to get a hug. What I wouldn’t do for just one more hug from her.
Brianna had a very strong love for family. Always asking when the next family party was, who was coming over, when Eric and Haley were coming, when her next time was to see her dad and Maria, and just a general excitement for the next gathering. She was also so polite. Always saying thank you, and yes, please. Even in her worst moments, she found it necessary to say thank you. I always said to her, “Bri, you don’t have to thank me…I should be thanking you.” And of course, that would get the standard, “whatever” response.
Before Brianna’s illness made her bed ridden, she would insist on going up the stairs to her room. I would always help her up the steps standing behind her and bearing her weight and listen to her apologize to me all the way up. Yesterday, as I walked up the steps at the funeral home I couldn’t help but smile as I know she is now running up and down stairs with the greatest of ease.
Brianna was also a very caring child towards others who where less fortunate than us. As part of our family ministry we deliver food to a local homeless shelter. We felt it important to involve the kids when we could so they would develop a sense of appreciation for what they have and an appreciation for helping those less fortunate. When Brianna finished with her last round of radiation, she asked when our next food delivery to Hessed house would be. I told her the date, and she replied “good, I can’t wait to go.” Unfortunately, she did not make the run do to her progression, but even in her moment of greatest pain, she was thinking of others…truly amazing.
Bri was also extremely artistic. I’m sure most of you have seen her work and have come to know her as a budding artist. We look forward to the day to see what she has painted in Heaven for us. I’m sure she having fun and keeping many angels and saints busy by showing them her work! I would also have to believe that she is rearranging all the paintings in heaven so they look just right!
This journey has changed our perspective on life. We used to think ones life was measured in the number of years that you lived. Now we say ones life is measured not in how many years you live, but how many lives you touch. As we look out here today, we can say that Brianna, though her years were short, lived one full life!
Brianna taught us the simple things. Enjoy a sunny day. Look up at the moon at night. Stop and listen to the birds. Say hello to a neighbor. Tell a loved on how you feel. Mend broken friendships and relationships and look at each day as a blank canvas. Imagine the possibilities if each of us did just one of those things…and all due to her.
As we say goodbye, we take comfort in knowing that Brianna has received her salvation. Though cancer took her body from us, it did not take her soul. We take comfort in knowing that she is in the hands of God and that we will be rejoined, as a family, together one day in God’s kingdom.
Thank you and God bless.

She's a Butterfly - August 5

2009-08-06T07:38:00.000-07:00

From Brianna's mom Jen:
We returned today from our annual Dells trip with all the Siemann family. Our trip turned out to be a blessing as we were able to have an “escape/break” with the added bonus of family support when needed. I admit feeling it was a mistake to go ahead with the trip as soon as we entered our room. We always stay at the Great Wolf Lodge and reserve a kid cabin suite because it has a separate area with bunk beds and a twin bed for the three girls. As soon as we walked in and I saw the three beds my heart sank. I wondered if Eric would opt to sleep in the twin rather than on the sleeper sofa as it would make me feel better not having to look at an empty bed. However, he no longer fits in the “kid” cabin twin beds…he is almost 6 ft tall, outgrowing size 14 shoes, and turning 15 in one month! What a difference from when I first met him…7 years old and wearing superman pajamas.
We went to dinner Saturday night and I could not help but cry wishing that Brianna was there so we could hear her laugh, see her smile, and watch her enjoy being with the family. Needless to say, Saturday night was NOT a good night. In fact, every night we made reservations for 15 people, not 16, just reminded me that Brianna is gone. Sunday morning proved difficult as well since we always attend mass at St. Cecilia Catholic Church. I passed on attending mass and headed to the pool hoping to pull it together before everyone returned. I didn’t want to have a breakdown at church. I wanted to distract myself and thanks to my friend Kim I found the distraction I needed. She gave me the book, 90 Minutes in Heaven: A true story of death and life. The story provides a very detailed description of a man’s experience of a short trip to heaven. I now have a very beautiful picture of Brianna entering God’s Kingdom of Heaven! Thank you Kim, Benny, and kids!!
Though I am having difficulty with Brianna’s absence, I saw two signs late Sunday morning that made me believe she was o.k. First, I saw a beautiful butterfly outside which seemed to linger for awhile before leaving my sight. Not too long after, I saw a white dove fly by. There are not a lot of birds around the outdoor water park and I’ve never seen white doves sitting around before!
I mentioned in my remembrance speech that I look to Bob for his strength and unwavering faith and how I would definitely look to lean on him in the days ahead. I was having a very difficult time until I told Bob about the “two signs.” I told him I thought Brianna was letting me know she was o.k. He looked at me, smiled, and said “good!” He told me he prayed in church earlier that morning for Brianna to show me a sign she was o.k., but he wasn’t going to tell me because I would be looking for signs that might not be there. The next day we saw a butterfly while on a boat tour where you don’t normally see any butterflies. On the way home today I found a song to bring me comfort titled, “She’s a Butterfly”, by Martina McBride. From now on, every time I hear this song or see a butterfly I will be reminded of Brianna.

She remembers when she first got her wings
And how she opened up that dayshe learned to sing
Then the colors came, erased theblack and white
And her whole world changedwhen she realized
She's a butterfly, pretty as the crimson sky
Nothing's ever gonna bring her down
And everywhere she goes
Everybody knows she's so glad to be alive
She's a butterfly
Like the purest light in a darkened world
So much hope inside such a lovely girl
You should see her fly, it's almost magical
It makes you wanna cry, she's so beautiful

Thank you for every act of kindness and support for our family during this difficult time. We are so grateful to all our family, friends, neighbors, and even strangers who have offered us condolences. As we prepare for the kids to return to school (and for me to return to teaching) we hope to find the strength and courage to deal with our loss while also taking on the stresses of a new school year.
God bless and Peace to you all!
Brianna's mom, Jen

The Brave Little Soul-Jen's Remembrance of Sweet Brianna - August 1

2009-08-03T12:45:00.000-07:00

Good morning. For those of you who do not know me, I am Brianna’s mom, Jen. I’m used to presenting U.S. History and Government in a classroom full of high school students, so I ask that you please bear with me.
There was a night, one of many, when I was having a difficult time and Bob found me in bed crying. He reminded me of what he said on the day he proposed which was, “I have no idea what the future holds, but I can’t imagine a future without us being together.” He then went on to remind me of our wedding vows…in sickness and in health…explaining that our vows were not singled out just for us, but for our entire family. His strength and love for family and his unwavering faith, made an unbearable journey bearable, and for that I love him. I am counting on his strength to help me through the days ahead and I am asking him to speak on OUR behalf, as his love for Brianna runs as deep as mine. But first, I would like to share a story with you…one I feel was written especially about Brianna.
THE BRAVE LITTLE SOUL By: John Alessi
Not too long ago in Heaven, there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there, and often expressed this joy with God. One day, however, the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see unlocks the love in people’s hearts.” The little soul was confused. “What do you mean?” she asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in peoples’ hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul, I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you, and suffer along with you, far beyond the others. They have already chosen a name for you.” God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus, at that moment, the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Brianna was so anxious to be born, she arrived 1 month early on April Fool’s Day. It was just like her to try to make people laugh. Imagine calling people to tell them you're in labor, on April Fool’s Day, knowing the due date wasn’t for another 4 weeks!!
We did have a name picked out already. That name was Brianna, which means strong, brave, virtuous, noble. Can there be a more fitting name for our Brave Little Soul?
She accomplished every one of those things listed above. GOD WAS PLEASED…AND SO ARE WE!!!
I am now going to let Bob speak on our behalf. God bless all our family, friends, neighbors, and especially our blue-eyed angel, Brianna Leigh!
Jennifer

My Letter to Brianna - July 31

2009-07-31T11:23:00.000-07:00

Hello everyone, this is a Maria. I wanted to share with you a letter that I wrote to Brianna. I read it during the wake in front of just the family and some close friends but I wanted to take this opportunity to share it with everyone. Jennifer, Matt and Bob will be posting their remembrances as well.
Dear Brianna,
I made you a charm bracelet. I picked out some trinkets that remind me of you.
PRINCESS – When I met your dad he always talked about how you were his princess.
FOUR LEAF CLOVER – You and Kaitlyn were in Irish Dance. You were so proud of your Irish Heritage.
HORSE – You always talked about your love for horses. I bet you are riding a beautiful white stallion right now.
CANCER AWARENESS RIBBON – I was so proud to walk the survivor lap at The Relay for Life as a fellow survivor. That is a moment I will cherish forever.
CELL PHONE – I was so excited to see the look on your face when me and your dad bought you your first cell phone.
FLIP-FLOP – I know how much you missed wearing Flip Flops when your coordination was off. I know you’ve got some on now.
PALM TREE – You were so excited to get your room done! The theme you picked was so fun. I hope you’re relaxing under a big palm tree right now.
DOG BONE – Your biggest wish was to get a dog. Little Gizmo is going to miss you so much!
CROSS – I always admired your strong Faith in God. You were an inspiration to so many people.
ANGEL – When I knew that it was only a matter of time that you would not be with us I had to start talking to Gianna about it. This is what Gianna tells everyone about where you are going……..
“Brianna is going to get wings and fly up high in the sky. She is going to live in God’s house which is called Heaven with all the other angels. She will also be with God’s son, his name is Jesus.”
I was saddened but joyful for Gianna when I had to tell her that you got your Angel wings. I told her that she is so blessed because now she can tell everyone she has an“Angel Sister”
I love you Brianna. I am going to miss you so much.
Maria

Thank you to everyone for your love and support.
Sincerely,
Maria Sharp
Proud Stepmother of Brianna and Kaitlyn Sharp

Visitiation, Funeral Mass and Luncheon

2009-07-27T06:45:00.000-07:00

From Brianna's Family -
Thank you for your overwhelming support and sympathy. We are reading all of your messages and finding comfort in them all...God bless you all for taking our precious girl Brianna into your heart and sending unending prayers which have blessed us with more love and faith in the human spirit and compassion that reaches far and wide.
Visitation will be at Friedrich-Jones Funeral Home (Naperville, IL), on Tuesday, July 28 from 2-9 pm.
All are welcome to attend a funeral Mass at St.Raphael Catholic Church (also in Naperville) on Wednesday, July 29 at 10 AM. Interment will immediately follow at Sts. Peter & Paul Catholic Cemetary. Upon returning to St. Raphael Catholic Church there will be a luncheon beginning around noon. You are welcome to celebrate Brianna's life and view photos, videos, artwork, and stories about Brianna. You may also want to bring a photo or write a short note about a fond memory you have of Brianna. Come and Celebrate her stong finish to a very difficult race!
One of the members of Brianna's carepage made a beautiful tribute to her and you can cut and paste the web address below, into your browser bar. The address ishttp://www.angelfire.com/tn2/psyches/dedicationbrianna.html
There were so many wonderful and kind words of sympathy and support, we are just overwhelmed as our hearts overflow with love for Brianna, but also for everyone of you who found a special place in your heart for our sweet girl, Brianna. i will like to share many beautiful poems that people have shared, but I will have to do so at another time. If you haven't taken time to read through the other messages people send, they are also inspirational by their deep faith citing scripture as well as finding the most appropriate words, poems, or expressions that lift us up everyday.
We look forward to seeing you so that we may celebrate Brianna's life and share some of her never-ending, never-having a point stories....one area where she failed to "finish the race" she could never finish a story!
God Bless You and Brianna is too!

She Finished Strong! - July 25, 2009

2009-07-27T06:42:00.000-07:00

"I have fought the good fight, I have finished the race, I have kept the faith." ~ 2 Timothy 4:7

Brianna passed away at 6:12 this morning. She finished the race strong….living up to the meaning of her name and her cross country motto. She was surrounded by her loving sister, parents, and step-parents.
We felt from the day of diagnosis that Brianna was here to serve a bigger purpose, especially if God chose her to bear such a heavy cross. If a child cannot live out their dreams and God chooses to call them home, we must know His plan is perfect. She always put others first and even though I told her it is o.k. to be selfish for once in her life…to let go if she wants to be out of pain, she held strong for everyone else. She held strong and allowed her family and friends to come share their love with her and she shared her love and so much more. Though she could not speak, could not move, and struggled to open her eyes for even a second, she would gather the strength to let us know how much she loved us. She wanted to bless us with a few more squeezes of the hands, a few more words, and to show us her beautiful blue eyes a few more times.
Though we don’t know all the plans He has for her, we do know she accomplished more in 13 years than most people do in a lifetime. She touched the hearts and inspired so many people, including her parents!
Because of Brianna, family relationships have healed, parents and children cherish each other like never before, and people grew in faith. Brianna would want nothing more than for people to be happy, but we hope she served a greater purpose by displaying the hope, faith and love which inspires people to seek out the little miracles and many blessings in every day. She did accomplish her primary goal in life. Especially as Matt, Maria, Bob and I were able to give her what she always wanted…peace in her family. She was not going to leave until we reconciled our relationships. Only hours after she heard it from everyone, she began to let go and she was lifted up!
We decided if she cannot live out her own dreams (hairdresser, chef, artist, marriage, kids) we would make at least one dream come true, which was to have her family together with her and at peace.Brianna is lifted up, healed in mind, body, and spirit. She is donning beautiful angel wings, and I imagine is being tugged at by two little boys who are asking her to play with them. God Bless Brianna…her Irish eyes are smiling down on us!
May the road rise to meet you.May the wind be always at your back.May the sun shine warm upon your face.May the rains fall soft upon your fields.And until we meet again,May God hold you in the hollow of His hand.
Dance as though no one is watching you,Love as though you have never loved before,Sing as though no one can hear you,Live as though heaven is on earth.
From Brianna's extended family - all of us, parents, siblings and more, opening our hearts to each other in love, as Brianna wished it to be.

Peaceful Night and Blessed Morning - July 24

2009-07-24T08:13:00.000-07:00

From my mom:
Brianna rested comfortably last night and looks very peaceful as she lies in bed with me. This morning we were blessed with several hand squeezes (and she even moved her left hand/arm today) and she opened both of her eyes widely to say good morning. Her lips were dry so I put moisturizer on her lips and she opened them as if she was relieved. I was especially blessed with her saying, "Mom" very clearly. Her breathing, though staggered, is remaining the same and the congestion is under control.
She is a fighter! Definitely lives up to her name, for sure...STRONG, virtuous, noble. She is cuddling HOPE bear, her comfort item from when she was a baby. How did we decide on the perfect name and how did she happen to cling to a praying teddy bear? I am beginning to see examples of how God's plan is perfect...some may say coincidence, but on our journey there have been too many to "coincidences" to believe that is all that is happening.
Trust in Him, Believe in Him, and be comforted by Him.Just as children view their parents. We are all God's children first and are blessed with the gifts of our precious children. I read this next quote in a book one day and have thought of it everyday since...."If I could sit on a porch and have a conversation with God, I would thank Him for lending you to me." Brianna is God's child first and if He chooses to call her home, He is the only person who loves her more than I...in that I find comfort and peace.
Praying for peace and comfort today, for my hero!
Right now she is really starting to move her arms and her eyes are open...Bye

Holding Strong! - July 23

2009-07-24T07:11:00.000-07:00

From mom Jennifer:
Nurse Jane arrived and was able to get Brianna feeling better and now appears to be resting comfortably. She was running a high fever and vomited twice. We cooled her down with cold towels and her morphine, ativan (anxiety), and robinal (congestion); then her breathing slowed down and she went back to her staggered breaths. Wonderful Maria came to help Jane give her a bath and change her bedding...Kaitlyn is showing unbelievable compassion and is gaining valuable nursing experience.
Brianna had family visiting her all day long!! As you already know, she has a huge family with both Matt and I being remarried with supportive extended families....
She opened her eyes a few times, moved her right hand a few times, and also made a few sounds all of which we believe shows she is hearing everything we are saying. She is holding on strong as everyone floods her with kisses and showers her with their love.
Nurses Jane and Robin spent the entire day helping us make 3D hand sculptures of each of us holding Brianna's hand. Bob and I made Eric and Haley's last night and for our first time they turned out...Robin is the expert so we are looking forward to seeing how the 7 others turn out! Brianna has perfect hands, fingers, nails...at St. Jude she received compliments every day on her nails because they are so beautiful. Thank you Jane and Robin for spending the day with us and taking the time to make such special gifts for each of us.
Thank you for all of your messages. I am taking the time to read your notes as it has been our source of strength to now we have so many people who love and pray for Brianna. Many of you have praised us for instilling such a deep faith in Brianna. We can take no credit as we have learned everything from her.
When I was a single mom with two toddlers, people kept telling me if you take them to church they will get used to it and will learn to behave. They were always so naughty in church. I would be kneeling for communion and they would be hitting, biting, pulling each other's hair, and kicking each other. I would leave church in tears.
I spent most of the mass every week begging God to give me the strength to get out of there without incident. After the girls realized I was not going to give up, they did in fact learn to behave in church. We started out sitting in the last pew and as they slowly learned to behave we would move up a few rows. We made it to the sixth pew and decided that was close enough. Who knew at the time Bob's parents and his brother's family sat two pews behind us! Brianna has been the only one of our kids who never complains about going to church...now they all accept it and appreciate it!!
I am sleeping with Brianna tonight and will continue to pray. I wanted to share the story with you so you all know Brianna has taught me a lot more than I have taught her.
She is going to finish strong!!

Struggling

2009-07-23T11:56:00.000-07:00

From my Family:

Brianna's condition has changed. We will do our best to keep you informed, but know that we are comforting her best we can at this time. Nurse Jane arrived and we are talking and sitting with her. She is very hot and is vomiting. Her breathing changed last night and this morning she is non-responsive. She is fighting a good fight, but we don't know how much longer. She seems determined to "Finish Strong", living by her cross country motto.
Please pray for her to be comfortable and pain free, and that she may feel God's loving arms around her!
Love, Jen & Bob (Eric, Haley, & Kaitlyn), Matt & Maria (Zachary, Madison, & Gianna)

Gizmo Did It...Are You Kidding Me? - July22

2009-07-23T11:54:00.000-07:00

From my mom Jennifer:
O.K. I mentioned yesterday that I accidentally sliced Brianna’s morphine line when I adjusted her bed railing. Well, today while nurses Jane and Robin were tending to Brianna it happened again. BUT, it wasn’t me…IT WAS GIZMO!!! He chews the clamp on the line and it cuts it in half. Jane came back tonight and rigged her morphine line so Gizmo can't get to it under the bed! Don’t worry though, Bob suggests we enroll him in a twelve step program :o) (You have to understand Bob’s sense of humor…no offense.) The pharmacy didn’t believe Jane when she called to tell them we needed another line…she said if she didn’t witness it herself she would have thought Bob was just trying to blame it on the dog! Remember, Bob claims to hate dogs…but if you sneak downstairs late at night he is cuddling the dog and feeding him snacks. Yeah, after telling everyone else not to feed the dog “people” food he goes ahead and does it when no one is looking! The pharmacy decided to draw a picture of a dog bone on the delivery bag...Ha Ha, very funny!!
Brianna is about the same nothing much changed. She slept almost the entire day, had two bites of applesauce, and nothing to drink. It appears her body is shutting down, but things are very unpredictable as we have followed many families and every experience is a little different. We pray that she remains comfortable and peaceful. She told me her head hurt this morning so I gave her an extra dose of morphine. She spoke very few words and the only ones I understood all day were, "I wish I could talk!"
I wanted to dedicate this update to the great-grandparents as they have such a special place in our hearts. Grandparents are o.k. (just kidding!), but GREAT GRANDPARENTS ARE THE BEST!!! You can see the words taken right from the dictionary! I am just a guardian…I have a long way to go before I earn any level of “importance or distinction” in the field of parenting :o)
Great: a person who has achieved importance or distinction in a field (i.e. parenting)Grand: magnificent, splendid, first-rate, very good, noble, revered, of great importance or distinctionParent: A father or mother; protector or guardian
Great grandma was diagnosed with lung cancer before Brianna’s diagnosis and they were each undergoing 6 week radiation treatments. Brianna worries more about great grandma than herself. She wanted to call them the other day so I dialed the phone, held it to her ear, and listened to her say, “I love you so much!” It is very difficult to understand Brianna’s speech, but somehow great grandpa understood. I learned today that great grandma has a new mass and the oncologist labeled it stage 4 lung cancer. Brianna would be heartbroken if she was aware of the news.
Brianna is blessed with several great-grandparents she has been able to spend time with: Marjorie & John, Ruth, Margaret, and Shirley. My family was always big on taking pictures of “the four generations.” The natural order of things is not to have the youngest generation leave first. However, maybe it’s the reason why some children are chosen to leave us and become angels? Grandparents & great grandparents need children to love and spoil in heaven! You can only play Bingo and Bridge for so long, and though some may deny it, fishing and golf becomes dull as well! Isn’t life better when you hear a child smile and laugh or watch them play? I don’t imagine people being excited to get to heaven without the smiles and laughter of children.
We have been blessed to have our entire extended family live near us our entire lives. We are what you call, “Naper-villagers” because we were born and raised in Naperville and have lived through all of the growth and change. People “new” to Naperville might be referred as, “Naper-villians” even though they may have lived here for 10-15+ years; because they may not know that the Starbucks downtown used to be a liquor store or that the Ann Taylor & Eddie Bauer used to be Cee-Bee’s grocery store. Seeing the community grow and develop has not changed its small town roots and feel. A city of 150,000 people and everyone still pulls together to help in a time of need. It has happened many times and you might have read about it in yesterday’s Naperville Sun as the Lacewell’s subdivision, then extended parts of Naperville pulled together to help them on their journey. They also took us on and are continuing to support us on our journey as well. Whether it’s neighbors, friends, schools, churches, police, fire, or Mayor Pradel, we have a support system that extends far and wide…it goes way beyond Naperville and we thank you all for continuing to encourage and support us while we enjoy our time with Brianna and continue on this tough road!
We would like to extend our deepest sympathy as CALEB SPADY passed away yesterday morning while his mother Kim was in surgery. She had to undergo another surgery due to a complication from her previous surgery for colon cancer. You might remember me asking for prayers for this family not too long ago. Caleb’s dad, Ken and his three brothers need to be lifted up in prayer. Please pray for Kim to have a speedy recovery. There are no words to describe what this family is going through. It is unbelievable how many families have lost children to DIPG in the past several weeks!! When will there ever be progress? As another parent put it, “Heaven gets sweeter every day!”
God Bless!!

"Whatever" & "Amen" - July 21

2009-07-22T12:32:00.000-07:00

From my mom Jennifer:
Today we had a visit from Aunt Georgia, Grandma Siemann, and Aunt Amy (who brought a wonderful Whole Foods lunch over)and cousins Kayla and Colleen. Brianna was barely awake almost the entire time and we understood very few words, but we were able to get her request for Macaroni and Cheese, and nurses Jane and Robin got a "Whatever!" The only other word we understood was "Amen" as she received communion.
I called nurse Jane this morning as we realized the line to her morphine pump was split in half. I think the bedrail cut the line when we put it up or down. I noticed blood coming back down her two lines. The nurses had to get her hooked back up and checked her vitals. Her blood pressure was down 96/60 and her heart rate was up. Her respirations are about 6-8 per minute. Yesterday her respirations were 16-18 and pretty regular, but today she seems to be back to taking 3 breaths, nothing for awhile, then 3 more breaths.
I found several pieces of Brianna's preschool and elementary school work. It is so interesting that kids she went to school with saw her the same way we do. We told everyone that Brianna is the one who wanted to tell stories to try to make you laugh, but she just wasn't good at it. It wasn't until diagnosis when she developed a quick wit and was good at throwing zingers.
Here is a quote from her 4th grade caring book. Every student in the class had to write a note to each and every other student in order to make keepsae booklet. One student wrote, "Brianna is a nice person. Sometimes she makes me laugh but doesn't. She is also a great team player." Lots of other notes about her creative/artistic abilities, how she is so nice and treats everyone with respect, and never wanting to leave anyone out or to get hurt feelings.
It is wonderful to have found all of her old school work. Kaitlyn and I had a great time sharing and searching for Brianna's art projects, journals, and notes.
We had a good day today and Brianna is resting comfortably. She has not shown she is in any pain and looks quite peaceful most of the time. It seems we have the pain under control and she ate more today that she did yesterday.
Brianna's dad Matt will likely visit again tonight at 8 pm. Kaitlyn is sleeping over at her cousins house. We are hoping and praying for an uneventful night! I will end with the prayer we've said ever since she could kneel at her bedside. I asked her not too long ago if she is praying before bed and she said yes. I tested her to see if she remembered our prayer and she said I still say that every night too!
Now I lay me down to sleep
I pray the Lord my soul to keep
His angels guard me through the night
and wake me with the morning light.Amen

From Brianna's mom Jennifer and all her loving family

Drastic Changes in 2 Days - July 15

2009-07-16T07:07:00.000-07:00

Update from Brianna's mom Jennifer:

I have a sixth sense that only a mother has...mother's intuition. Through this entire journey, whenever something bad happens or we take a turn for the worse, I suffer insomnia the night before as if I know something is going to happen. I should have known last night's insomnia was a sign to tell Bob NOT to go on his business trip. He is currently trying to get a flight home from Denver tonight. He didn't really want to go, but I told him it would be o.k.
Brianna has been sleeping since 2 PM yesterday afternoon with only occassional periods where she is awake. Awake is a relative term, as we barely understand what she is saying and she is not asking for food anymore. Trying to give her medication in pill form is a challenge as she fights you tooth and nail and she even bit my finger today. She either spits it out or chews the medicine and doesn't drink from the straw anymore. Instead she bites down on it and tries to pull it out of the cup. Nurse Jane is starting an IV since we may need to use it very soon.
Her breathing has changed in the past few days. She will takes 3 breaths then nothing, then 3 breaths. You can drive yourself crazy just watching and waiting to see her take the next three breaths. She is very upset and confused. Last night she said she doesn't want to die. I had to have a long discussion with her to tell her it's o.k. and I talked about Max. I said he might need her one day to help build a million lego sets! I told her there would be a lot of other kids and she can help Jesus take care of all the sick kids, because all she wants is for no one else to suffer. She wants the tumor gone!!
Patience is a virtue, and we are definitely being tested by Brianna “Waaaiit!” “Not Yet!” “5 more minutes!” “Hold On!” No matter what we are asking her to do we get these responses numerous times and she really tries our patience…especially when we try to give her medicine. What should take 1 minute can take up to 10 minutes or more! Based on this information our day today was "Good" (Remember Good is our baseline, there are no bad days.)
Just Monday Grandma & Grandpa Sharp visited and Aunt Julie and Uncle Josh are still here. Brianna was very sleepy and wasn’t making much sense, but we learned that Uncle Josh does NOT have cooties! Whew! I felt bad that Brianna was sleeping the entire visit, but just when they were going to leave she woke up to say hello and give some hugs…but she made us all laugh incredibly hard because she made several shocking statements that we thought were out of her character, but then that’s typical with her confusion lately. Imagine a group of adults hearing certain statements and thinking, “wow,” and standing around somewhat sober faced only for Brianna, at just the right moment say, “I’m kidding” and then smile. Then we would give a sigh of relief and break into laughter. She did it over and over again. I need to preface the next statement because we certainly do not mean any disrespect for disabled/handicapped individuals and Brianna would be the most sensitive to this group. She hugged Grandpa Sharp and told him she loved him and he was special. She then started pointing to each of us saying, “You’re special, you’re special, you’re special.” However she got to Aunt Julie said “You’re special ed.” I can’t even remember all of the other jokes, but it was a great way to end the visit with the family.
Karyn came to give Brianna a haircut (trim). Karyn is one of my closest friends and Brianna and Kaitlyn were flower girls in her wedding. Brianna told Karyn she wants highlights in her hair. Karyn asked her what color and she said one, then two, then kept listing different colors. Karyn said you may not want all of those colors because you’ll look like a bag of skittles. Brianna gave one of her belly laughs and it was an AWESOME DAY. Brianna’s hair is three different lengths. From the radiation at St. Jude the bald spots have over an inch of growth and it’s coming in curly just like when she was little. It took almost 2 years for her to get hair, but once it came in she had beautiful blonde curls, and we loved when it was humid out! Now, she hates her hair and wants it straight. Brianna spends most of her waking hours, which are becoming fewer, running her fingers through her hair…over & over & over & over….she ends up pulling out some of her hair when she does this, but it seems to be a comfort to her. It’s a futile effort to try to do anything with her hair because a minute later she is pulling it out.
Now within a couple of days I am barely able to get her to open her eyes and there are fewer hugs. I can't even describe to you how horrilble it feels to have to feed and diaper your 13 year old. She is aware that she is having accidents and is terribly upset. There are no words to describe what it is like to watch your teen regress back to infancy as you slowly lose them to a horrible cancer.
Brianna keeps saying she wants to go home. For a long time I was telling her we are home, assuming she is talking about our house. Though she just said yesterday she doesn't want to die, I am hoping those words have new meaning so she can go home with Jesus, be comforted by Mary our Blessed Mother, and behold the face of God.
Thank you for all of your prayers and unending support. Thank you to our "Naperville Friends" who delivered the awesome basket of gifts and cards. I will be reading those cards to Brianna so she knows how much she is loved. I am at a loss for words when I see how much love there is for our Brianna. Please pray for God's will to be done and for Brianna to find peace and comfort in the days ahead.

Kaitlyn is My Superhero - July 12

2009-07-13T06:46:00.000-07:00

From Brianna's mom Jennifer:
While getting Brianna seated at the dinner table Saturday night, Brianna was insistent that Kaitlyn come over to her because she was Brianna’s superhero. She gave Kaitlyn a big hug and whispered in her ear. I asked Kaitlyn to immediately write down what Brianna said. Brianna said, “I love you so much and you’re my best friend!” (there was more, but Kaitlyn forgot the rest…that was all she probably needed to hear) Regardless, Kaitlyn walked back to her seat and said, “Finally, I get the appreciation I deserve!” I am sure Brianna is Kaitlyn’s superhero as well, but she just hasn’t said it aloud yet. In recent days, especially since Max’s passing, Kaitlyn has been a HUGE help and is constantly watching out for Brianna. She has been absolutely wonderful and amazing!!
Grandma Close & Great Grandma visited today. Great Grandma cries just thinking about Brianna, but she made it through a long visit without crying. Great Grandma is struggling with lung cancer and Brianna has spent a lot of time worrying about her. Brianna wanted to call Great Grandma & Great Grandpa the other day and she told them how much she loves them. Brianna told me weeks ago that God told her to be close to Great Grandma & Grandpa and she continually talked about visiting them, so she was excited to see Great Grandma!!
The past two days Brianna has become less aware of her surroundings and has not eaten nearly the amount of food as usual. She might also have a little relief because her belly is not so bloated. Matt came by today and brought orange chicken from Panda Express…she didn’t show any excitement at all.
Kaitlyn and I have been sorting through all of Brianna’s notebooks/sketchbooks. WOW!! There is a ton of artwork and journal entries. The majority of which has only been completed since early May. For the past three weeks she has not been able to write or draw anything but scribbles. Most of the drawings are really cute and happy. She has many, many pages where she describes her feelings for us. We filled one binder already and need 2-3 more in order to have a place for all of her other work. We shared the first binder with Brianna today and she was quite impressed with some of her artwork! :o) She doesn’t realize it’s her work, so we looked at each other and smiled.
I really don’t like ending an update on a sad note, but another child has earned her angel wings. Ravyn Finch, the little girls we met at St. Jude passed away, but she was a very strong warrior who put up a very strong fight. Please pray for her family as they adjust to life without Ravyn’s big, beautiful brown eyes! You are in our prayers & we love you very much!
God Bless You!

Don't Worry About Tomorrow - July 11

2009-07-13T06:43:00.000-07:00

"Brianna, what are you doing?" I asked.
"I'm going to flick this pea at you."
Brianna and I were the last ones at the dinner table and as I was working on my laptop I looked up to see her elbow on the table and her hand in a fist directed at me. She flicked a pea at me!! Why? Because she wanted to!!
Another teenage tendency that normally would not fly in our house is calling your parent by their first name! Well, Brianna gets annoyed if I don't respond to her immediately (within 1-2 seconds.) She resorts to "Jen" "Jennifer" or even "Jennifer Ann Siemann." Oh well, I can't help but smile...
Fr. Ted came over from our parish to pray and annoint Brianna. It was wonderful that as soon as he annointed her, she reached to give each of us an individual hug, one by one. Even though she was extremely tired and ws having a few delusions while Fr. Ted was speaking, he waited patiently for her to quiet down and continued. Brianna makes the sign of the cross, recites the Our Father, and folds her hands in prayer.
Brianna was discussing Joseph the other day at dinner and it was very interesting that Fr. Ted discussed Joseph and his significance.
Leanne Lacewell visited us the other day and reminded us to enjoy this time which enabled me to get a new perspective. Don't compare her to yesterday, don't worry about what's ahead, enjoy her as she is now! Even though it's with much assistance, she is walking, talking, feeding herself, she is still giving hugs and she knows who we are...most of the time. It's hard not to think about what's ahead, but I also read a page from a devotional that Leanne gave to me. The message was "Do not worry about tomorrow." As a command He said He divided time into days and nights so we have manageable portions of life to handle. His grace is sufficient, but only if you handle one day at a time.
I worry too much about the future and He was clear that if you do that, you will carry more than He intended and will end up with a web of worry, foggy mind which makes it more difficult to hear and listen to Him.Thank you Leanne for the gift as I have already changed my perspective and hope it will continue to guide me through this journey.
God bless all of you who continually lift our spirits and offer words that comfort at just the right time. We love you and are grateful to have you in our lives.
Brianna's mom Jennifer

Great Day Ending With a Rainbow - July 8

2009-07-09T09:13:00.000-07:00

If a good day is our starting point, today was a GREAT day. Brianna even said so when Grandma Close asked her how she was doing this morning. She seemed to be a little more aware of what was happening around her and she talked several times making perfect sense.
Today was the service for Max Lacewell and we decided that I would attend alone so Bob could watch Brianna. It is becoming more difficult and requires more strength to help her get around. We didn’t feel we should leave that burden with the grandmas. Bob and I were watching the morning news then we heard Brianna talking to Max. Bob pressed mute and I moved closer to her bed to see if I could hear what she was saying (it’s difficult to understand her because her speech is slurred most of the time), but I did hear her say something about him sliding across the floor and she wanted to play rock, paper, scissors… I assume she was still talking to Max.
With Brianna’s short term memory loss, she asked Bob where I was today and he said I went to Max’s funeral. She must have forgotten that I told her previously because she began to cry so Bob had to talk her through the emotional moment and give her peace of mind that he is o.k. and she will be o.k. too.
At dinner tonight Bob took his turn at saying grace and told us what he was thankful for. This has been a long tradition in our family and has become a little difficult because when everyone would take their turn the first think we would say we were thankful for was that everyone was safe and healthy. Now it has become something like, we are altogether, had a good day, etc. Tonight, something inspired Brianna to recite the Hail Mary which we have never done at dinner. I asked her why she recited the Hail Mary and she told me that Mary told her to. WOW!!
It takes a long time for Brianna to eat her meals so I sat alone with her for 20-30 minutes after everyone else was done. I noticed once during this time she made another sign of the cross and prayed quietly by herself. It brings me a great deal of peace when I see Brianna making the sign of the cross at random times, then folding her hands in prayer. She is an inspiration to me as I cannot muster the strength or the nerve to pray some of these days. If she can…then I should be able to no matter what!! Lesson learned!
Sometimes it’s difficult to tell if Brianna is having a delusion or is making perfect sense. I decided to press on and ask a few questions then sat quietly listening to her talk. Sometimes talking to me, while other times she talked to no one in particular. I heard her discussing birthdays and she was talking about Joseph. Once again, I was not able to understand what she was saying, but I asked her, “Who’s the Joseph you’re talking about?” She gave me “the look” and said, “Jesus’ father!” Duh, who else would she be talking about…I am so dense! Then she proceeded to tell me for her next birthday she wants to see the big boat with a ribbon. I had no idea where she was going with this but it eventually became clear she was describing Noah’s Ark! I agreed with her…how cool would that be, it’s HUGE!
Lately, Brianna has been talking a lot about packing a bag or suitcase. When I slept with Brianna a few weeks ago I would woke to find her in her closet with clothes spread out all over the room as if she was ready to pack for a vacation. Yesterday, she made mention of a suitcase on three different occasions. The social worker was here and said that it is a common end of life scenario when people begin discussing packing, travelling, etc. At dinner tonight she told me items I should pack in her bag. Coolio (her beta fish…it died 3 days ago but we didn’t tell her), a few toys (maybe Max is making a few requests because the items are not typical Brianna toys), a mattress (I guess she likes her bed too much), special toothpaste, toothbrush and mouthwash (glad she is into good hygiene), and her Hope Bear (her stuffed, praying bear which is her security item.)
I find a lot of this reassuring but also scary at the same time. I am definitely very reassured that she has reached a level of faith that I don’t think I will ever reach! Though she still gets worried and tells us she is scared, she must also feel God’s love taking care of her, especially when she is able to feel and speak openly about what she is seeing, hearing, and feeling. Today was a GREAT day!
By the way, I missed it…but I heard there was a rainbow at the end of the rainy day today. Must be a sign from Max that things are good and beautiful! God Bless Everyone!

Brianna's Hugs - July 6

2009-07-09T09:12:00.000-07:00

Yesterday was a very difficult day for us. To learn of Max’s passing and also deal with Brianna’s increased pain… I finally had enough at 9 PM. I went upstairs, had my breakdown, and went to bed. I said long ago that Max and Brianna share a special bond. It was mentioned in the WCIU news story and I have mentioned it in previous updates, but I want you all to know that it is much more than sharing a terrible disease. We did not tell Brianna about Max until after dinner, but she made a few statements during the day making us wonder how deep the connection goes. The most interesting was when Brianna’s teacher Jill was sitting with her so I could take the dog outside and when I came inside Jill told me someone called but they didn’t answer. Brianna, who was in and out of sleep sitting on the couch said, “Did it say Lacewell on the caller ID?” Jill and I looked at each other and I told Jill that Leanne and I only use our cell phones and there has never been a Lacewell call to our house phone. I told Brianna about Max after dinner and she was very upset, in disbelief because, “He was a good boy and didn’t do anything to anyone!” It is a difficult concept for adults to grasp much less a child, especially one fighting cancer themselves. Today she had a conversation with Max. I wasn’t able to hear exactly what was said, but she was talking to Max!!
Through all of her pain and confusion Brianna is still able to poke fun at her sister Kaitlyn. The other day at dinner she said that Kaitlyn was going to end up in juvie because she continues to streak through the White House. No idea where that came from, but it made us laugh. Kaitlyn is learning to take it with a grain of salt…just shakes her head and looks at us as if, “what the heck?” We told her to enjoy it because it’s the Brianna we know and not the cancer. Brianna’s favorite word is “Whatever” and she is still gives me ‘the look,’ anyone who has a teenager knows ‘the look.’ They don’t have to say anything but you know what they are thinking! “What are you stupid?” or “You’ve got to be kidding me!” It’s nice to know I still annoy her. She has mastered the eye roll as most teenagers do, but she adds the “whatever” at the end. Normally, the “whatever” would bring a lecture or some other discipline action…but I am just glad to see glimpses of Brianna without cancer. Brianna wanted to say something yesterday, but realized I was distracted by some guests so she said to those near her, “Whatever, I will just wait for mom to listen because I am not going to repeat myself!” (Eye roll…sigh!)
Today we witnessed two small miracles!! Brianna called for Kaitlyn, not once… but twice, to come over so she could hug her and tell her how much she loves her….over and over! She wanted to wear her t-shirt from Mary Poppins so she could match Kaitlyn and asked Kaitlyn to climb in bed with her. I’m sooo very thankful for this as it did my heart good and definitely showed Kaitlyn how much she loves her! This made today a GREAT day!
Even though Brianna is struggling with vision, balance and is more confused, she is still anxious to put her arms out for hugs from everyone. Sometimes she will even call for us just to give us a hug!! Brianna loves Nurse Jane (hospice nurse) who is able to get many smiles and even a few giggles, which is very rare. Brianna is always the first to give people hugs…you never have to ask her for a hug.
The past couple of weeks have been heartbreaking for those living in and following the DIPG community. I am not following many children, but through the few I do follow I have learned there were at least 7 children in the past 10 days that have passed from this horrible cancer. How long will it be before we can even find a treatment that might work? I am including links to two organizations, started by parents who have lost a child to DIPG and who are making a commitment to research and finding a cure. I also am very thankful to the Lacewell Family who will use monies from the Max Lacewell Benefit Fund to create an endowment for Children's Hospital in Chicago, which will be spent for research on brainstem gliomas. God Bless Max and his family!
http://www.caringbridge.org/visit/maxlacewell
www.thecurestartsnow.orgwww.justonemoreday.org

Never Be Discouraged (We're Trying!) - July 4

2009-07-09T09:10:00.000-07:00

The weather today matches our spirit on this Fourth of July holiday. It’s cloudy, rainy, chilly…no cookouts, no fire in the firepit, no s’mores, and no fireworks. Brianna struggles each day and is losing her spirit. She now needs assistance at all times as her balance is off, she has fallen a few times, and even has difficulty eating. This became apparent Thursday and Friday as Aunt Faith was here to visit and help out. She witnessed Brianna’s balance deteriorate in just 2 days. What's worse is her mind is almost completely gone and she has no sense of where she is or who she is with. She carries on conversations with people who are not there and she’ll call out for you when you are sitting next to her. If it isn’t enough to watch the physical breakdown of your child, we have also lost her mentally as well. Conversations are non-sensical and there are very few, rare moments when a glimmer of Brianna shines through…like poking fun at Kaitlyn or rolling her eyes at me. The rest of the time, she appears to be in her own world!
She fell the other day and as Kaitlyn jumped to try to rush to catch her, Brianna started screaming at Kaitlyn, “Get away, I hate you, get away!!” In Brianna’s mind, Kaitlyn tried to hurt her and pushed her down. This ripped Kaitlyn’s heart out and after I explained to Brianna what she was trying to do, she hugged Kaitlyn and apologized and told her she loved her. Thank goodness Aunt Faith was there to comfort Kaitlyn and bring her back downstairs to let Brianna apologize. There was also an incident where she started yelling at me to keep Bob away because he was going to hurt her, when usually he is the one who brings more comfort to her than anyone. She trusts him to help her more than me….probably because she feels safer as he is much stronger than I.
Nurse Jessica began helping out from 11pm-7am, Monday-Friday and it has lifted a huge weight. Brianna still doesn’t sleep well at night and we have no idea what keeps her going! We have had plenty of family and friends coming over to help during the day, to allow for a short emotional break or a much needed nap. I was preparing Brianna’s breakfast today only to look at her eating a crayon. She doesn’t remember eating so the effect of the steroid is worse than ever, not because of the dosage, but because her memory doesn’t allow her to realize she just ate 2 minutes ago. She can no longer reason and trying to keep a 13 year old contained is extremely challenging. Another emotional toll is having my 13 year old calling herself, “fattie!” She also asks, “Do you think I’m pretty?” “You can’t lift me, I’m such a fattie!” Thank you to the steroids, not only does Brianna have to worry about cancer, she has to suffer an additional emotional toll of feeling fat and ugly! No matter what you say to her, she won’t remember so she continues to ask or repeat these questions and statements. She also has stretch marks over much of her stomach, hips, thighs, legs, etc. What makes me very angry is the fact that there is a drug out there that treats edema without all of these negative side-effects, but it hasn’t been approved for children! A 13 year old girl who went from 105 lbs-at least 140 lbs. UGH….I wish I could cut through the red tape!
We had equipment delivered to our house yesterday. A hospital bed being one of them….this is heartbreaking!! I had to go upstairs yesterday and allow Bob and Jill to take the delivery. Today, as much as I hate to admit it, the bed has proven to be a benefit as it keeps her safer by making it difficult to get up and down and risk falling. She has to have our help to get out of bed where as on the couch she would get up and easily fall. The bed is in our family room so she will have company all day long and Bob and I will take turns staying with her on the weekend nights. As long as she can still use the stairs, we will have her sleep in her bed when the nurse comes to help. She loves her bedroom!!She tries to color or draw, but usually ends up with lines, circles, or squiggles on a page. Her speech is slurring and it is becoming more difficult to understand her. Thus, if you ask her to speak up or repeat herself she becomes very frustrated. Her mental, emotional, and physical condition deteriorates every single day. We never know what we are going to experience from one moment to the next.
Our heart is also breaking for our friend Max! We seem to have been on identical paths since diagnosis. Today, Brianna started crying for Kole (our buddy from St. Jude who we pray remains stable!) She misses him and wanted to see him soooo bad!! Another friend from St. Jude, Ravyn Finch is also not doing well so hearts are breaking all over the place.I don’t even know what to ask for anymore. Obviously, prayers…but I don’t have any energy left to even begin to think about what to pray for…..I am trying not to get discouraged and find the strength to carry on, but it is very difficult. My sister sent me this poem which helps, but I think I need to read it more often.
“Never Be Discouraged”A Poem By: Helen Steiner Rice
There is really nothing we need to knowor even try to understand,If we refuse to be discouragedand trust God's guiding hand.So take heart and meet each minutewith faith in God's great love,Aware that every day of lifeis controlled by God above.And never dread tomorrowor what the future brings,Just pray for strength and courageand trust God in all things.And never grow discouraged-be patient and just wait,For God never comes too early,and He never comes too late.

Kaitlyn and Haley Inspire Too - July 1

2009-07-09T09:09:00.000-07:00

My stepdaughter Madison was so inspired by the success of Kaitlyn's and Haley's lemonade stand that she wants to open her own lemonade stand! It will be open the following 2 days:
Thursday, July 2nd from 2-6p.m.Friday, July 3rd from 2-6p.m.
Location: Madison's Grandma's DrivewayStreet: 175 Raven Ln.City/Town: Bloomingdale, IL
We will be selling brownies, cookies (Maria's homemade ones) and lemonade. Please come show your support! All money raised will go to the brianna sharp medical fund.
If you are unable to attend and would like to donate please go to www.curebrianna.com. Click on the online donation button and instead of putting in your home phone type "madison's mission".
Checks can also be mailed to:5554 Gable Ct.Hanover Park, Il. 60133(please make payable to The Brianna Sharp Medical Fund)
Even though Eric, Zachary, Madison and Haley are not Brianna's blood sister they see Brianna as their own sister and want to love and protect her just as though Brianna was their own sister. They are very bright, smart and caring kids that only want the best for Brianna. As parents we are quite proud of them.
Bob (Jen's husband) and Maria ( my wife) have been instrumental in Brianna's life as well and love and care for Brianna and Kaitlyn as though they are their own children. I felt the need to write about them because I want people to know that they are instrumental in every way with Brianna and helping her in this fight against DIPG. Its so easy for people to focus on Jennifer and I because we are her biological parents but I felt the need to give the spotlight to the step parents and step siblings in this post because they deserve it. I wanted to thank them both with this post because I don't think they get enough thanks (at least from me I know)
We have been overwhelmed with the love and support of our friends from all over and we are grateful for your prayers. We feel it every day.
Matt

Same Ol' Brianna - Too Sweet - June 30

2009-07-09T08:52:00.000-07:00

We seem to have a new medication schedule for Brianna that is helping with the headaches, nausea, and sleeplessness. Last night she slept from 10-6, took some medication and ate a small snack, then slept again until 8:30!! Woo-hoo!! We were able to get a handful of hours in one shot! Tonight we begin a schedule with a nurse who will be here Monday-Friday, 11PM-7AM…. So maybe Bob and I can get out of our zombie-like state!!Last night we had ALL of Brianna’s cousins over for a sleepover/lateover. So you can imagine, I will list names and ages...just to give you an idea of the craziness! (Bridget 21, Bernadette 21, Amanda 19, Lauren 19, Christopher 16, J.J. 15, Kayla 9, Brendan 7, Colleen 4...and that does not include our four kids (Brianna 13, Kaitlyn 11, Eric 14, & Haley 12)!! I could only imagine how insane it would be to add the cousins on her dad's side of the family!
By the time everyone arrived she was tired and didn’t feel like participating in the games, but she did enjoy having everyone together. It was tough on several of the cousins to see Brianna’s current state and several witnessed her fall twice this morning. Once Bob and I helped her back up and gave her the walker, she was apologizing to everyone while she walked to the kitchen. Typical Brianna, worried about everyone else and their feelings. We were finally able to get all of the cousins together at one time and this is nearly impossible with ages ranging from 21-4, jobs, college, sports, family commitments, etc. Brianna’s 13th birthday was close but Amanda was at Notre Dame, last night we were able to finally make it happen as the youngest was able to arrive before Brianna passed out for the night. We will be posting pictures soon since it has been a long time!
Brianna has had some increased headaches and nausea but it seems to have gotten under control with the new medication schedule. When she does have a few severe episodes she is still able to control herself a lot better than I would be able to. For example, in the Dells she was complaining of the worst headache and nausea EVER!!! She said, “I have a lot of words to describe how I feel right now, but God would not be happy with me!” Hell, oops, I mean heck…I would just let it out with my Irish temper and likely include colorful language (which is now used very rarely…24/7 with Brianna for 8 weeks cured me) I highly doubt I would have the restraint and disciplne to be in so much pain without using a single bad word! No matter what, she does not want to offend God.
Finally, she did view the video from WCIU and I wondered how she would react. Though she was a little drowsy she did watch the entire video. I was prepared for all sorts of questions and rehearsed what I would say or how I would explain things to her if she picked up on the statistics. She asked me to rewind a part where it showed the scan of her head. She asked, “Is that my head?” I told her yes. She then went on to say, “MAN, I have a BIG head!” Whew…that was all she had to say! She enjoyed the video even though she was almost impossible to deal with during taping because she is very camera shy!!
Thank you to Aunt Jackie and Uncle Dave for hosting the Poker Night Fundraiser!! We really appreciate all of your help around the house,helping with the kids, and efforts in fundraising!!
I want to ask for more prayers from everyone as we learned that the mother (Kim) of another DIPG child (Caleb Spady) was just diagnosed with colon cancer. Doctors are hopeful that surgery will resolve the issue, but please send some extra prayers. She is a mother of 4 boys, had breast cancer, is dealing with colon cancer, and is also going through the same battle we are…I can not even imagine what the family is feeling and experiencing right now. You can visit their site on carepages if you are interested in sending a well wish. Just type “KeepingUpWithCaleb” in the box under the “Visit” icon. Also, please keep the Reilly family in your prayers as they adjust to the loss of sweet Liam. Keep in your thoughts and prayers all the children and families battling progression and also pray for those who are stable, that they may continue to be blessed with good news!
Thank you and love to you all!
Brianna Sharp & Family: Jen & Bob Siemann (Eric, Brianna, Haley, & Kaitlyn), Matt & Maria Sharp (Zachary, Madison, & Gianna)

Little Helpers & Lemonade - June 27

2009-07-09T08:51:00.000-07:00

Before I give you the final total for Haley and Kaitlyn’s Lemonade Stand Fundraiser, I want to tell you about 3 other kids who made their lemonade stand during a garage sale in Montgomery, IL. Logan Slou (4) along with Jordan & Marin Munos (10) decided that they wanted to sell lemonade and give the money to Brianna, because, “all they want is for her to get better.” Logan even had a choice to take the money and go to Target to get a toy, but he said he would rather the money go to Brianna so she can get better. What 4 year old passes on a toy at Target?? The twins lost their dad to cancer when they were only one year old and now their mother is taking a daily chemo pill to fight skin cancer. These little helpers raised $20 and wanted it all to go to Brianna. When Bob and I received the money with their notes, it really touched us. Please pray for the twins and their mother so they may be cured and freed from cancer in their family!
Wednesday was a hot, humid day here so Haley and Kaitlyn decided to set up a lemonade stand to raise money for Brianna’s Brigade. They had a very successful first day making $178. It motivated them to set up the stand on Thursday and after I saw how hard they were working I put out a not to my emails friends, who must have also passed along word. I think after day 2 the girls were up to over $700. They decided they would open their stand on Friday from 11-3 PM hoping to reach a $1000. I mentioned this on the carepage update and not only did they reach their goal, they went way beyond…the GRAND TOTAL for the LEMONADE STAND was $1,850.00!!***If you paid online it is not included in this total as I do not have access to that account. Please email me at jensiemann@sbcglobal.net so I can add your name and amount and verify that Haley & Kaitlyn receive the monies, then we will add it to the grand total. They would be SHOCKED if we could tell them they raised over $2,000, which they are close to doing!! We are so proud of Kaitlyn and Haley for all of their hard work. At the end of the day, Brianna gave each of them a hug and thanked them for everything they did!
I would like to ask for some extra prayers for all of Brianna’s siblings, who are now witnessing Brianna’s decline in health and abilities. Kaitlyn is especially struggling as she is Brianna’s only true sibling and they are best friends. They have a love/hate relationship, but it leads to feelings of guilt as one child falls ill they both wonder if they have been nice enough to the other. Kaitlyn finally had a breakdown last night and came crying to me saying she doesn’t want to lose Brianna, she doesn’t want her to leave us, and Brianna is the best sister ever. I comforted her best I could by letting her know that we will take one day at a time and she can spend as much time with her expressing love for Brianna and letting Brianna know she is the best big sister. I had the baby monitor on in my room and I was able to listen to Kaitlyn climbing in bed with Brianna and she really began expressing her feelings of love and admiration for her big sister. It did not take too long for her to regain composure because she is a very strong girl who doesn’t show emotion like Brianna. We hope Brianna is able to feel the love and admiration from all of her siblings, and that they may feel it too….hopefully, no one will be left wishing they would have said more or done more to show their feelings for each other.
We will try to get back to focusing on each day and making it the best day possible, but it is not easy as we battle deeper, scarier emotions than ever before. Until we get there we need to thank everyone for coming over each day to keep Brianna entertained, occupied, or just to keep an eye on her since she can disappear in a second….she is so quiet when she moves about and sometimes gets frustrated if you fuss over her too much. Aunt Pat, Grandma Siemann, Aunt Georgia, Aunt Jackie, Grandma Close, and many other friends and family have helped clean, organize, cook, shop, helping out in any way to make it easier on me and Bob as we struggle with our emotions on top of huge sleep deprivation. We are tag-teaming the night shift to make sure Brianna stays safe. However, setting up high tech baby monitors, using child door handle covers, etc. she is still able to manage and maneuver in order to get what she wants…mainly food!! I sleep with her and she can slip out of bed and the next thing I know I am covered with clothes as she decides to clean out her closet. I heard her calling my name late last night and the baby monitors and sleeping in the same room, she still managed to give herself a bath but fell when she got back into the bedroom. We are doing everything we can to keep her from getting hurt, or hurting others….Bob and I are looking at finding someone to watch her at night as he needs to be able to function for work and I need to be able to care for her during the day without being in a zombie state.
Thank you for all your extra prayers and kind words over the past two weeks! We also thank you for your kindness and generosity in helping provide meals, gift cards, and offers to come help provide relief so we may get a brief reprieve and reenergize in order to better care for Brianna.

The Lemonade Stand - June 25

2009-07-09T08:50:00.000-07:00

Brianna's sisters (Haley and Kaitlyn) decided they wanted to set-up a lemonade stand to raise money for Brianna's Brigade. They set a goal of raising $1,000 for the Brigade and after 2 days they are very close to that goal...they only need to raise $300 more to reach their goal.
Brianna was blessed to see some of her teachers, best friends, neighbors, and was supported all day by Grandma Siemann, Aunt Georgia, and cousin Amanda. They spent the day with us helping keep an eye on Brianna while I took breaks to assist Haley and Kaitlyn in their efforts. Though Brianna was half awake/half asleep all day long, she still showed some smiles to those who popped in the house to see her and give her a hug!
Today the girls had a visit from a police officer and he told us he would put the word out. Soon there was a steady stream of police making our street a stop on their rounds. By 4 PM we had firetrucks and all!!! Brianna found the energy to come outside to see the firetrucks and was able to sit in the firetruck with the help of a few firemen. This is completely out of her character!! It took all her energy but she still insisted on walking back in the house.
SO, if you have not heard about the lemonade stand fundraiser and are in the Naperville area, or know anyone in the area, please pass word along so Kaitlyn and Haley can reach their goal of raising $1000 to help their sister and others fight pediatric brain cancer! They will operate 11 AM- 3 PM, at 3527 Timber Creek Ln, Naperville, IL.
Thank you and God Bless!!

Liam Reilly's Words - June 25

2009-07-09T08:49:00.000-07:00

Though we had very difficult days lately, the Reilly family (Ryan, Maria, big sister Maeve, identical twin Owen, and little brother Aidan) needs many prayers for peace, love, and comfort during the reent passing of their sweet, Irish boy, Liam. We have asked everyone in previous updates to send prayers for this family, but we hope you can send some extra prayers as they struggle to adjust to the loss of their sweet child. Liam earned his angel wings very early morning on Monday, June 22. I am including a quote from Liam that shows what an amazing and beautiful child he is...and this goes right along with the discussion I had with Leanne Lacewell about how Brianna and Max are such special, incredibly sweet children...who knew that Liam had wisdom beyond his years to answer why these things happened to the most sweet, beautiful, loving children.
"You know the thing about angels Mommy? 'What?', I replied. Well,God makes you then he puts little girls and boys on earth. Angels without their wings. He watches you grow, how much you love God and how nice you are and your wings grow just a little. When you become everything He wanted you to be, you die and go to Heaven and then he gives you your full angel wings...and you get to keep them forever. " ~Liam~
http://www.caringbridge.org/visit/liamreilly
The Reilly Family is absolutely an inspiration to us and I think of them so often and gain strength from their faith, devotion, and strong dedication to being the best parents!! Please feel free to express your sympathy and prayers on in their journal. You can cut and paste the above link into your browser.
I hope Brianna continues to maintain her close connection with God and so she is able to find comfort in His loving embrace. Last night she said that God told her she can't stay on Earth, but then she also went on to say that God told her that she can't go to heaven either! I felt this was a sign of her waivering in the strong faith she has held onto for so long. Bob and I told her that children, especially those that must carry such heavy burdens and suffer on earth, well, they go straight to heaven. I talked her through the footprints poem again and she said that Jesus was carrying her and telling her it was going to be o.k. She said we were all there walking behind telling her "she's o.k.", "it's o.k.", and then she said that the blessed Mother was waiting in heaven for Jesus. She could feel His hair and His warmth, He was walking barefoot, she could feel the sun, she could hear waves and people telling her she's o.k. and she was smiling and Jesus was smiling. Laying very peaceful in bed, I told her there are more people than our Blessed Mother waiting for Jesus and the people He carries to heaven. For Brianna and I, it would be my dad (her Grandpa Close) who would be one person waiting. She fell asleep within a minute.
Please pray for the Reilly Family. Please pray for Ravyn Finch as she is experiencing a very difficult time right now. Pray for our buddy Max, that he and his family enjoy their time and Max continues to have good days playing with friends and family. Please pray for Brianna so she may continue to stay strong in her faith and feel God's loving embrace. Please pray for all DIPG families dealing with tumor progression and terrible symptoms, and also pray for those who are stable, that their tumors remain stable and leave them symptom free!

The Most Difficult Decision - June 23

2009-07-09T08:45:00.000-07:00

It has been awhile since the last update and a lot has happened, so we hope you bear with us. At the end of this update we have included a link to the WCIU story by Kyle Porter, titled “Brianna’s Battle.”
We started our vacation with the kids on Friday afternoon. We knew Brianna was struggling with short term memory loss and also struggling physically, but we had no idea that we would witness a very drastic decline in Brianna’s condition and have reality slap us in the face in the middle of our vacation.
After returning home from Children’s Memorial (Monday afternoon), Brianna completed her last week of radiation treatment and rested every day in order to recover and save energy for a trip to the Wisconsin Dells. However, before leaving for the Dells there was one surprise Bob and I planned for the three girls. Bob purchased front row tickets for the Mary Poppins Broadway musical and Brianna (we all) loved every minute of the show!! It was spectacular and brought many smiles to Brianna’s face, which are harder to come by these past few weeks. She did not remember it the next day, but we now live moment to moment. Brianna enjoyed a great day Saturday and her pain was controlled (increasing headaches and nausea.) She was able to be out of the house for most of the day without incident!
Sunday morning proved to be a challenge as her headaches and nausea reached new levels. At this point she was also experiencing increased episodes of complete confusion/dementia. Bob and I woke to a large Tupperware bowl filled with mini-wheat cereal and there were 3 whole peaches thrown in (sticker and all). The night before, she made a concoction of organic brownies with Coco-Pebbles cereal. She apparently forgot she made these as she never actually took a bite out of either. Based on her latest condition, I was seriously contemplating whether or not Brianna and I should go on the trip. We called Dr. Jason to discuss what we should do. We took our time in the morning, waiting for Brianna to feel better after giving increased morphine and a one-time steroid boost. Again, she did well and was able to enjoy the day. Sunday’s dinner was spent in our hotel where Brianna had everyone laughing and she laughed and smiled more on this night than she has over the past several weeks. We had a blast Sunday night as she let out some great belly laughs. We try to keep her calm by listening to her stories and going along with them as best we can.
Monday proved a very difficult day as she has reached a level of delirium…beginning to see people and things that are not there. Brianna is slipping in and out of sleep periods all day and night, making it impossible to get enough rest to function. Because she needs 24/7 attention and assistance, I managed to get 2 hours of sleep last night…in two, 1 hour increments!! The time I spend with her in the middle of the night is incredibly difficult, but also rewarding. This is the time she expresses such deep love and affection. I can’t bear the thought of missing any waking moment with her. I want to laugh, but she tells me over and over that I am pretty and she wants to look just like me when she grows up! Of course, this morning she was rubbing Bob’s head telling him how pretty he was…she didn’t realize that she was in the wrong room!Kaitlyn, Eric, and Haley are witnessing the rapid decline in Brianna’s condition. They are all doing a great job helping out and keeping an eye on her actions, but without any short term memory any direction or advice they give is immediately lost. Kaitlyn always wants to push her in the wheelchair and is becoming more helpful. It must be incredibly difficult for them to witness her condition and see my meltdowns out of Brianna’s sight, but they seem to be holding up pretty well. The first major sign where Haley and Kaitlyn witnessed the severity of Brianna’s condition was when they saw Brianna eat paint at the pottery place thinking her brush was a fork. We were all painting when I noticed she had paint in her mouth. The most heart-breaking moment was watching her struggle to paint a simple cross…she is no longer able to paint and color like she used to…
While we were making our way home from the Dells today, Matt went to meet Dr. Jason in order to review the latest scans. We learned that the cancer has spread throughout the entire brain. Total brain radiation would do more harm than good. We have made the difficult decision to begin transitioning from palliative to hospice care. We said as long as she is strong and willing to fight, we will continue to seek treatment. When you decide to turn to hospice for your child, it’s too much to bear because it is going against every parental instinct, which is to protect and care for your child. You question whether or not your decision is the right one! We have to believe she is in God’s hands and we will trust in Him. Brianna told me 4 nights ago that she had a face to face conversation with God and He asked her how she was doing and told her to keep fighting. On the way home from the Dells today, she told us she had a weird dream describing that whenever she tried to walk she was floating. I feel frightened and comforted at the same time by her “dream.” When Brianna feels frightened I remind her of the Footprints poem and I have her visualize Jesus carrying her and I ask her to describe using her 5 senses. What does she feel, see, hear, smell, taste…it immediately brings her peace.
Kyle Porter did a phenomenal job on Brianna’s story!! I am so pleased with how it turned out. I was nervous about whether or not I would be able to watch the story. If the link doesn’t work, you can go to www.wciu.com and find “Brianna’s Battle” video segment under the Chicago Insider icon. Scroll down to find the video clip. To view the clip please cut and paste the link into your browser.
http://www.wciu.com/video.php?assetID=10000071

The Future is Uncertain - June 18

2009-07-09T08:42:00.000-07:00

When we returned home from Children's we knew Brianna would need some extra attention and assistance and thought it would be temporary. However, Brianna of last week compared to Brianna of this week....unrecognizable!! She needs assistance walking, bathing, dressing, getting food, basically any activity requires additional assistance. She is getting her voice back a little bit but it is difficult to understand her sometimes because her words are slurred. She has been awake all day the past few days, but only half-awake as she nods off from time to time.
We have reached an extremely difficult part of this journey. Brianna has not just lost her short term memory, but she has completely lost all sense of reality. I can handle the constant, repetitive questions, but I am having difficulty with the fact she is completely lost in this world. I don't think this has happened to other DIPG children in progression, but this is something that has wiped out my sense of peace in handling our situation.
This morning she woke me up at 4 AM and apologized for ruining our Christmas. I didn't quite understand that was what she said until we came downstairs and she asked where the tree was. She asked me why Aunt Georgia and Uncle Mike were leaving (they were never here), she told me she was sorry she pushed JJ (her cousin) off the bed but she was scared, she told Matt that Haley was at the hospital because she broke her leg, she told the nurse that she had soccer practice yesterday and that she hates soccer...
This is just a sample of some of the comments she made just this morning. She is very irritable already, so to keep her from getting too agitated we go along with her stories. Again, you can choose to laugh or cry, but at this point I am not finding it very amusing and have had my breakdowns. I am trying to find family members to come sit with her for a short period so I can catch a breather and a quick nap.
We do get some laughs though because she still has a quick wit and can make comments or throw zingers out...a talent she only developed since diagnosis. She was never good at making people laugh and never had the ability to throw out zingers...though they are usually at Kaitlyn's expense, it's all in good fun. We are also able to get some laughs out of Brianna, though they are very few and far between. We miss her smile and her laughter so those moements when you are lucky enough to catch it, it's a truly blessed day.
Kaitlyn has been absolutely wonderful lately!! She is out of school and is witnessing the rapid decline in Brianna's health which I think is making it easier on her to see why Brianna has been the focus for so many months. Though they fight constantly and as I pointed out before, they have always had a love/hate relationship, they have expressed real concern and love for each other over the last few weeks. As for Kaitlyn, she is extremely strong and helpful and is taking everything in stride...including allowing Brianna to chide her without getting upset.
Matt and I are trying to decide what to do next and are weighing our options as we are more uncertain now than ever as too what direction we go from here. Brianna will go for another platelet transfusion tomorrow and Bob an I are going to take the 4 kids to the Dells for at least 1 night, hopefully two...so we can enjoy time together without interruption and without worrying about doctors, appointments, cancer, steroids, food, etc. Of course it will be on our minds and Brianna will be very limited in her activity. We hope that we can have a good time and make some memories.
For those of you who do not follow other DIPG sites, I am stealing some good advice given to one of our good friends...
EVERY DAY IS A GOOD DAY, SOME ARE JUST BETTER THAN OTHERS!!
I will chalk today up as a good day. And I will pray for tomorrow to be better.
Finally, I will leave with another Irish saying,
The future is not ours to know, and it may never be-so let us live and give our best and give it lavishly!

Quick Update - June 15

2009-07-09T08:38:00.000-07:00

Brianna had a rough night last night and was up a lot, having to go to the bathroom because of the increased fluids that she has been taking in from her IV. Brianna had a 100.3 fever last night and was given Tylenol to get that down. About 9:30am today she had a fever at that point again. They have infused her with steriods and an antibiotic through her port. She still is fighting this cough but they believe this antibiotic she will go home with should knock that out.
Believe it or not, they are aiming to discharge her in the next hour or so and she will go with me to get her radiation treatment for the day and then head back to Jen's to rest up. I am a little apprehensive about her going home so soon but they assure us that the meds she is going home with should take care of what she needs.
The scans from all the docs here suggest that any CSF (fluid) buildup is not that great to justify doing a surgical procedure at this point. Her memory loss is probably the most troubling thing for Jen and I at this point. It is really startling to talk to her and see the mental lapse of memory. Hopefully going up on the steriod should be good enough to help with that. She won't be quite as high a dose as she was previously at her highest point but hopefully going to 12MG a day should do the trick.
We will check her platelet counts and White blood cell counts today and then again Thursday.
We will keep you updated as stuff progresses. Thanks for all your thoughts and prayers. We feel them.
Matt

ER Visit - June 14

2009-07-09T06:52:00.000-07:00

Early this morning Brianna woke up with a severe headache, nausea and difficulty breathing (possibly due to the cough she developed over past few days, but you never know for sure!) The ER doctor at Edward Hospital in Naperville decided to contact Children's Memorial to determine what they would like to do. It was decided that she would be transported to Children's Memorial via ambulance as they could best take care of her and evaluate further. Matt drove directly to Children's in order to meet Brianna there as I went back home to get a few things in case she was admitted overnight. I asked her what she wanted me to do and she preferred that I get her notebooks, pens and ipod. I was a little concerned though because with the short term memory loss I wondered if she would get confused or panic in the ambulance if I wasn't there. I informed the paramedics to remind her about the situation if she questioned what was happening.
Dr. Goldman (Children's) reviewed her MRI and chest X-ray and had a neurosurgeon consult to review records to determine if she needed any procedures performed (shunt? / ventriculostomy?) The MRI shows a fairly stable brainstem tumor (they will verify tomorrow), but the nodules on the ventricles have definitely increased in size and there appears to be some fluid putting pressure on the ventricles. The neurosurgeon decided there is no need for a procedure at this point, but the team of doctors and surgeons will meet to discuss her case and evalute further tomorrow. I will be spending the night with Brianna at Children's. We hope to be discharged tomorrow afternoon so she can make it to radiation later in the day. Dr. Goldman said finishing radiation is the priority at this point so we need to do what we can to get her through this last week of treatment.
She is needing more pain medication, but they have not recommended increasing the steroid medication...at least not yet! We will keep you posted as to what the doctors recommend.

Cancer Drives the Bus - June 13

2009-07-09T06:45:00.000-07:00

Yesterday was supposed to be an easy day. Brianna had radiation to the spine at 7:00 AM and an MRI of the brain at 8:30 AM, then home to enjoy a relaxing day. The day was off to a great start as we made it to Winfield and back to Naperville just in time for MRI registration at Edward Hospital. I was able to stay with Brianna until she was sedated and Matt waited for her to finish. In the end, everything was o.k. but it definitely had me frightened as I waited by myself and worried about Brianna’s MRI. Soon, Brianna was back in the room and was feeling good. Matt informed me, however, that her platelets dropped back down to 24 and they were going to keep her for another transfusion. Her white blood cell count also dropped and we will have a visit from the home nurse tomorrow morning so we can learn how to administer a medication through her port that will help bring up the white count. Ugh…nothing is ever easy!!!
Something that prompted the MRI and that has become more troublesome is the loss of short term memory. Brianna is becoming increasingly frustrated about her memory loss as she can’t remember anything she has done throughout the day. It’s very difficult to hear her ask the same questions over and over and for me to try and answer without showing frustration. She continually asks what day it is, what we are doing, where we are going, etc. and she will ask the questions continuously throughout the day, sometimes repeating herself within minutes. She doesn’t remember that Eric and Haley are in Florida with their mom and she continually asks where they are or when they are coming over. Today she asked this question at least 5 times on our way to radiation and she was asking again when we returned home as she wondered where they were. Hopefully, the MRI answers our questions about what could be causing the short term memory loss, and more importantly, tells us what course of action we must take next!
Brianna finishes radiation in 1 week (5 more treatments) and it can’t come soon enough. Though there is a possibility that she could face more radiation to the brain if the cancer has metastasized to parts beyond the brain stem; we will cross that bridge when we get to it. The cancer is in the driver seat forcing us to respond whenever symptoms occur. We had to interrupt the medication (Avastin and CPT-11) in order to focus on the cancer in the spine, beginning radiation immediately. The focus shifted from the head to the spine and now we are forced to look at the head again as she is experiencing a slight increase in headaches and problems with memory. We will review the MRI result with Dr. Jason at our Tuesday appointment.
There are no easy answers and nothing to guide us in this journey except looking at Brianna and how she is doing, listening to doctors’ advice, praying, and making a decision taking all things into consideration. Even if we get back into the driver’s seat, the cancer will hold us hostage and tell us where to go and what to do.Thank you for your continued support and unending prayers. We want to hold up our special friends in prayer. Please pray for “Little Dude,” Max Lacewell and his family as they struggle with another leg in the journey. Also, please pray for Liam Reilly and his family as they are experiencing a very difficult time and are in great need of peace and comfort. All of our DIPG warriors are extraordinary children and their families’ exhibit unbelievable strength and courage. We pray for all who have traveled this path, are currently traveling it, or might face it in the future. God Bless!!
Love,Brianna, Jennifer (mom), Matt (dad) and family

CT Scan - June 9

2009-07-09T06:39:00.000-07:00

*** From this point forward, all updates will be from Brianna's parents. Brianna is unable to write any comments herself. ***
From Jennifer, Brianna's mom:

Brianna is still coloring and doodling constantly. In fact, you might consider buying stock in paper and pen companies since she has filled several notebooks and gone through tons of gel pens!! Come to think of it, buying stock in Walgreens would be wise since we can make a run for prescriptions and other items on almost a daily basis. Her spirit is good and (knock on wood) she hasn’t had any major meltdowns lately. She has been experiencing minor headaches off and on, but never admitted it until a few days ago. Either she doesn’t want to worry us, or the minor pain is something she shakes off based on what she has been through over the last several months…or maybe a combination of the two. She is holding her own and is keeping herself occupied with coloring. She has minimal complaints except for being hungry all of the time!
Something that has concerned us lately is her loss of short-term memory. Bob and I noticed a definite change about 1 ½ weeks ago. I first noticed two weeks ago that she would ask the same questions or repeat stories that she has shared numerous times. We have been waking up early to go to radiation for four weeks and she asks where we are going and what we are doing. It has increased to the point that late Sunday morning, on the way to her sister’s volleyball game, she asked if we were going to mass. We reminded her we went last night. Then I asked her if she remembered what we did following mass and she did not remember going out to eat. In the last two days she has become aware of the fact she is having difficulty remembering and shows only a little frustration over it. This is also upsetting and frustrating for me, but to keep my spirits up I have to chuckle at some of the things she has done. For example, putting ketchup from the fridge into the pantry, thanking me for letting her use my (actually her) iPod, and placing the entire hand mixer into the kitchen sink (cord and all). We have been keeping Dr. Jason informed about these changes and since it appears to go beyond effects from medicine or exhaustion he decided to order a CT scan.
Today’s CT scan showed that the primary tumor (on the brainstem) was stable for the most part. The other smaller tumor nodules appear to have grown slightly larger but nothing too alarming from the CT scan. The ventricles, however, do look enlarged and are most likely showing increased cranial pressure which can explain some of the headaches Brianna has experienced. We will be doing an MRI in the next few days to determine the exact size of the tumor on the pons and the other nodules and we will be looking closer to see if there is more fluid buildup in the ventricles in the brain.Fluid buildup can create pressure on the brain therefore causing headaches and nausea. That can be remedied with either increasing her steroids (which is not a pleasant thought as we have weaned down to half of the dosage from four weeks ago) or possibly having a surgical procedure with a shunt placed in her head to drain the fluid. We will know a lot more after the MRI is complete.Her platelet count from yesterday’s blood draw was at 82, which means that Brianna (for now) does not have to have a transfusion! That was quite a relief! Her neutrophil levels were good (those are the cells that help fight infection). Dr. Fangusaro said that he feels her exam from today was pretty good despite all the rough stuff she has gone through over the last week. Her strength is good and her energy level was good today. Her energy level can change from day to day as yesterday she slept for most of the day, including through the nurse visit and blood draw.We look forward to the MRI so we can get a more exact picture of what’s going on. It was a relief to hear the CT scan results because we did have concern that we had been focusing so much on the tumor spreading to the spine that we weren’t treating the primary tumor in the brain. The brainstem tumor looks fairly stable, but back at St. Jude in April we learned that a few nodules popped up in other parts of the brain. Those nodules where the cancer has spread might actually be able to be given radiation. (Yes, we are possibly facing more radiation…but that is o.k. if it provides relief and can take care of the other tumors in the brain.) Her brainstem has taken as much radiation as possible, but after consulting with Dr. Goldman, Dr. Fangusaro felt that might be an option to radiate the other parts of her brain. Of course, we will wait to see the MRI results first.
We will keep you updated. Thank you for your unbelievable support and continued prayers. We are extremely grateful and are so blessed to have such a wonderful, supportive community of support! We remain strong in faith and continue to pray for all of our DIPG warrior friends. Please lift Liam and Ravyn up in prayer as they are having a difficult time right now and their families need to be blessed with God's grace and mercy. Also, continue to pray for our friends Max, Kole, Caleb, Andrew, & Carter.
God Bless!

1 Transfusion Over With! - June 6

2009-06-08T11:56:00.000-07:00

Medical update from Brianna's Mom Jennifer:

Thank you for all your prayers…they were definitely answered! The platelet transfusion went great! If Brianna was nervous she didn’t show it, she was a real trooper! I felt my anxiety level increasing once they started giving her the platelets. I found myself constantly looking at my watch to see if she could make it past the 5-10 minutes when she reacted last time. They gave her plenty of medication and although it shouldn’t matter with platelet transfusions, they made sure that the blood type was an exact match just to be safe. We will check her numbers again on Monday to determine whether or not she will need another transfusion on Tuesday. We will push through to finish the last two weeks of radiation and support her with platelets whenever needed.We left Children’s around 1:30 and Brianna slept in the car the entire ride home then immediately went back to sleep when we arrived home. Her nice long nap allowed her to be energized enough to attend the Relay for Life event. We arrived at 5 PM and she went until 9:30 PM when she finally hit a brick wall. I thought we would be lucky to get 2 hours out of her and pictured her sitting in a chair or hiding in a tent, but she enjoyed having friends and family push her around the track in her wheelchair!

The weather was perfect, but what made the day even better was the fact we were able to meet so many people who have been supporting us in this journey. We saw people who we did not recognize wearing Brianna’s Brigade t-shirts. We were so overwhelmed by the number of people introducing themselves and are thrilled that they took the time so we can put names to faces. Thank you to everyone who came out to support Brianna and the American Cancer Society. Brianna (and her entire family) were so excited to see the number of people come out to support her… all gathered in one place wearing Brianna’s Brigade shirts.

A huge highlight of the day was seeing “Little Dude,” Max Lacewell himself, along with his parents David and Leanne, and sister Addie. This was the first time we were all gathered in one place at one time! Max Lacewell’s “Little Dude’s DIPG Warriors” rocked in fundraising and overall support. Brianna and Max have only met a few times but they have a unique bond in battling a devastating disease. I recall the first time I met Leanne and in the course of our conversation we learned that we already had the answer as to “Why?” Max and Brianna. They are two of the most loving, caring children who shine above all others in their ability to connect with people. Whether it is their smile, laugh, charm, or their unique ability to show compassion and empathy at such a young age…we realized that is precisely why they are chosen to endure such a difficult journey. Seeing the number of people supporting Max and Brianna proves they have touched more hearts than anyone can imagine. We are all God’s children first and as parents we are given the privilege of raising these beautiful children. How blessed are we to have Max and Brianna because through them we have come to know so many extraordinary people who display the deepest love and compassion. The communities that support Max and Brianna reach far and wide and we will forever be grateful for their willingness to share in our journey. Please say a prayer for all who have been affected by cancer (past and/or present) especially young children and their families! Thank You & God Bless!

Love,
Brianna's Family

Platelet Transfusion - June 4

2009-06-08T11:54:00.000-07:00

Medical Information from Mom Jennifer:

Good news to report...our friend Kole Miller returned to St. Jude a week ahead of schedule as they suspected possible tumor progression, but the MRI shows that his tumor remains stable! Thanks be to God!

We are asking for a few extra prayers tonight and tomorrow as Brianna will undergo another platelet transfusion tomorrow morning. Her number dropped from 35 down to 24 and Dr. Jason feels it is very important to get the transfusion done asap. We will miss radiation tomorrow morning so we can head to Children's ahead of rush hour...hopefully. She will be given steroids and Benadryl prior to receiving the platelets and they will watch her closely throughout the transfusion.

Hopefully, everything will run smoothly so we may return home around lunchtime. I will be busy preparing for the Relay for Life event and setting up our campsite. We would like to have Brianna get the rest she needs so she can enjoy her lap(s) around the track and visits from friends and family who come out to support her. Brianna and Kaitlyn were able to meet my girlfriend from high school, along with her children, as she delivered some equipment and golf balls for the event! Thank you Mike and Greta for the HUGE box of golf balls and for letting us borrow the net and putting green. Stevie rocks!! He did a great job helping Kaitlyn with the golf balls....so cute!!

Thank you for your continued support and prayers!! Please continue to pray for all children fighting pediatric cancer, especially our DIPG warriors. Max Lacewell and family can use some extra prayers as they begin another treatment. Liam Reilly and family can use extra prayers for comfort and peace during a very difficult time. We are so inspired by the strength and courage displayed by DIPG families and find comfort in the fact we are not alone in this very difficult journey. God Bless!

Brianna's Family

A Very Long Day - June 2

2009-06-08T11:50:00.001-07:00

Today was really hard so Mom is going to tell you what happened.
Love,
Bree

Note from Mom Jennifer:

Today consisted of Brianna’s radiation treatment (7 AM) and her weekly visit to Children’s Memorial (left at 9 AM). We did not return home until 8 PM! Kyle, the reporter from WCIU, joined us today at Children’s to continue working on Brianna’s story.

The visit to Children’s was for her normal check-up (blood work, exam, and meeting with Dr. Jason) and she was going to receive an antibiotic through an IV as a preventive treatment. We didn’t know it at the time but our day would prove to be a tough one. If her blood work came back with decent counts she was going to start up on the IV chemo infusion (Avastin). Last week we learned that her platelets dropped from 331 down to 85 (Normal range is 150-450, too low can lead to excessive bleeding since platelets help with clotting; too high and dangerous blood clots result). Today her platelets dropped down to 35 so they decided to do a platelet transfusion. She will be tested again in a couple of days. Since she is undergoing radiation treatment to the spine her ability to produce platelets and maintain levels is hindered.

After Brianna was infused with the antibiotic they set up the platelet transfusion. We were told that there was a chance of an allergic reaction or other reaction and it could range from mild to severe. It is standard of care for patients to receive platelets without any pre-medication. The nurses and doctors wait to see how the patient will tolerate, or if they can tolerate the transfusion, and adjust accordingly. In Brianna’s case, it only took about 5-10 minutes to learn she had a severe reaction to the platelets. I called a nurse when she began to have difficulty breathing. Within 1-2 minutes there were 3 nurses and a doctor giving her various medications and oxygen. This experience scared Brianna so much she began to panic and it took Bob and I, along with the constant presence of the doctor and nurses, over an hour to calm her down. Dr. Jason was called immediately. Our goal is to avoid any more attempts at platelet transfusion (20 or below leaves us no option) but if we must, she will be pre-medicated with steroids, Benadryl, etc. in order to avoid any similar reaction. We are holding her chemo medication for the next few evenings to see if her number goes up. I should add that Bob and I were very impressed with the reaction and response by the nurses and doctors….it definitely left us feeling she is in great hands!

After a long day and very scary experience, Bob and I decided to take Brianna to Greektown for dinner. She thanked us profusely and was in no hurry to leave as she continued sketching in her journal. I believe she is on her 4th large notebook for journaling, sketching, etc.

If anyone happens to be in the Naperville area (Neuqua Valley H.S.) on Friday night, feel free to stop by and say hello! Brianna’s Brigade is participating in the American Cancer Society’s Relay for Life event. Our theme is golf because coloring/labeling cancer golf balls and driving the golf balls seems to be a big hit. Our two phrases: “Driving Out Cancer” & “PUTTing An End To Cancer” focuses our attention on allowing individuals to purchase golf balls that they can decorate or label for any cancer they wish to PUTT an end to, or DRIVE away…it is a huge stress reliever and we hope others will think so too!!
THANK YOU---For your unending support and prayers! We are incredibly grateful to you all!!

Brianna's Family

Medieval Times - June 1

2009-06-08T11:31:00.000-07:00

Hi -
I really had a great weekend. We went to Medieval Times on Saturday and it was really fun. I LOVED the food but it was kind of gross eating with my hands. LOL
I was supposed to go to church on Sunday but I didn't sleep very much Friday or Saturday because of the medicine I take and after breakfast my stomach hurt so Mom let me go back to bed. I felt a little better after I slept. After lunch I felt pretty good again and I got to go to the mall to get my nails done. That was a treat. Then we went to the pet store at the mall and I got to play with one. It was really cute.
I still have some more radiation but you know I don't like all that stuff so I'm gonna let Mom tell about it.
Thanks for reading and sending all your love and prayers,
Bree

Note from Dad Matt:
Brianna has some more radiation treatments to go and is still taking the Temodar along with the pain and nausea medications and has tolerated them quite well. Tomorrow (Tuesday) she will go into Children's for her normal checkup. She will get her blood drawn first so that they can check blood levels and see if she might be able to go back on the Avastin. If her levels are questionable then she will get the Pantanamine antibiotic infused. (She will get that once a month via her port.) Then she might have to wait for the Avastin until the blood levels are good enough to resume. We hope that her levels are good enough today to resume.
She is continuing to wean off the steriods little by little and hopefully that can continue as that is the main reason for her inability to sleep through the night. She has been and continues to be a trooper and is always doodling in her notebooks and watching TV and taking naps as she gets tired throughout the day.
This weekend starting Friday afternoon we have the American Cancer Society's Relay For Life. Jennifer is working really hard to organize this thing and I won't steal her thunder as I will let her explain that in the next update. We have a link on the www.curebrianna.com webpage if you would like to support us in this effort. Just go to the GET INVOLVED tab on the site and the link is there!
Please keep Max, Kole, Alexis, Andrew, Ravyn, Caleb and all the other DIPG warriors in your thoughts and prayers. Brianna's Brigade will be thinking of them all night next Friday into Saturday as we participate in the Relay for Life!!!!
Matt, Jennifer, Brianna and the rest of the gang

Wednesday - May 27

2009-05-27T09:08:00.000-07:00

Hi -

We had a lot of fun this weekend. We went to Peoria on Saturday night to watch Kaitlyn's volleyball tournament. I felt pretty good and talked all the way there! Finally when we got to the hotel Mom said a whole bunch of times Seriously, we need to get to sleep because we have to get up early! I couldn't help it tho cause we were having fun talking and mom looked so happy!
Kaitlyn and I decided we wanted to go to the Memorial Day parade and we got to see Gregory's marching band. It was FANTASTIC and I'm so glad I used to be part of that band when I played flute!
I've been feeling pretty good but I'm getting clumsy and I lose my balance sometimes. Mom is already filling out the papers for me for 8th grade and Kaitlyn and I have already been talking about getting to ride the bus together again. It's been 2 years since we did that and it was fun!
Ok now it's Mom's turn. She wants to send everybody an Irish proverb that she likes.
Love,
Bree

Note from Jennifer:

Shining Through The Tears

It's easy to be pleasant when life flows by like a song.
But the man worthwhile is the one who can smile
When everything goes dead wrong.
For the test of the heart is trouble and it always comes with years.
And the smile that is worth the praises of earth
Is the smile that shines through the tears.

Love and thanks from Brianna's family

Detention and Memorial Day weekend - May 22

2009-05-27T08:54:00.000-07:00

Hi everybody,

We have been real busy this week even though I have been so tired from the radiation. On Tuesday morning I fell down and hit my head and it was pretty scary. Wednesday was good though. It's been kinda weird because a reporter from WCIU in Chicago wanted to interview me and I feel funny about when people want to take my picture. There is a lot to tell and Mom does it better than me so she's gonna write all about it.
Love and thank you to everybody for all your support!
Bree

From Mom Jennifer:
(This is a longer update, but I wanted to include some very important events and a special thank you to Brianna’s relatives who we will honor this holiday weekend!) Thank you very much for following this journey and for your unending love & support!!
BRIANNA'S STORY?---A reporter from WCIU Chicago learned about Brianna after reading the November newspaper article in the Naperville Sun. He was following her story online and contacted us about two months ago to see if we might be interested in sharing her story. May is brain tumor awareness month and he was inspired by Brianna’s positive attitude in dealing with such a difficult illness and it is our hope that her story will touch hearts and build DIPG awareness. The reporter is sensitive to our needs and requests and is not overly intrusive. He is showing great patience as Brianna is the most camera-shy person in the world!! Trying to capture her true personality is quite a challenge. We hope that we have been able to capture some glimpses of the “true Brianna” in order to show the world how incredible she is…we want people to see Brianna the way we do! Kyle spent most of Wednesday trying to capture special moments to give people a true picture of what Brianna is going through and how she handles herself.
DR. VISIT---I took Brianna to her doctor appointment Wednesday (Dr. Ellison-primary) and Kyle was there to capture the check-up and the patient/doctor relationship. He was planning on following us for the day and the doctor visit was the first outing of the day. Of course, Brianna was very quiet and shy and it was difficult to capture the wonderful rapport between her and Dr. Ellison which is one of mutual love, respect, caring, and understanding. Brianna presented Dr. Ellison with a gift (a special picture frame she made for Dr. Ellison with a picture of the two of them together) so hopefully that act will show her true personality.
BRIANNA VISITS SCHOOL FRIENDS---Following the doctor visit, we went to Brianna’s school to surprise her friends and say hello to everyone after a long absence. Brianna has TONS of close friends and I am amazed at what a wonderful group of girls she has chosen to associate with…absolutely the most caring, talented, supportive, loving group of friends! It is not an exaggeration when I say that her list of “very close friends” is at least 15-20 girls. Ms. Beauregard and (not all…but a lot) of Brianna’s friends were waiting for the surprise and it turned out to be a wonderful visit. They each helped color/label golf balls for us to use later that evening. When I looked around the room at these incredible girls I had to ask (already knowing the answer), “Have any of you ever received a detention?” Of course, the answer was no, because just like Brianna, these girls are too sweet to ever get into trouble. So, Ms. Beauregard decided Brianna should receive her first detention for vandalizing golf balls!! I signed the detention slip, but I did not take Brianna to serve the detention the next morning. :o)
SMACKING GOLF BALLS---Bob, Eric, Haley, Kaitlyn and I decided to drive some cancer golf balls into the woods behind our house after dinner Wednesday night. Kyle was still following us, but Brianna was pooped out and needed a nap. Kyle filmed us swinging the clubs, but some need more practice than others. We realized what great therapy this is and we plan on continuing to collect donated golf balls, decorating them, and making it to a driving range to continue to smack cancer and “stupid DIPG tumors.”
HOLIDAY WEEKEND---Brianna and I will travel to Peoria Saturday night in order to watch Kaitlyn in her volleyball tournament. Matt headed to Peoria this evening with Kaitlyn so she can play Saturday afternoon. I hope Brianna feels up to the trip as we know our plans have potential to change last minute depending on how Brianna is feeling. We hope to finish out the volleyball season with Brianna cheering on Kaitlyn! We wish Kaitlyn and her team the best of luck in the two-day tourney!!
GOD BLESS---All of our military veterans and current soldiers this holiday weekend! Especially, Brianna’s Grandpa Rick Sharp (U.S. Army-Retired), Grandpa Jack Close (U.S. Coast Guard-retired, deceased), Uncle Jeff Close (U.S. Navy-Retired), Uncle Josh Moser (U.S. Army-Active, two tours Iraq), Great-Grandpa Richard Sharp (U.S. Army-retired, deceased), Great-Grandpa James Skinner (U.S. Army-retired), & Great-Uncle Steve Sharp (U.S. Army Reserves-Afghanistan), Great-Grandpa Harold Cochran (U.S. Army-retired, deceased), Great-Uncle Robert Cochran (U.S. Army-retired).

From Brianna's Family

Can't Thank People Enough - May 19

2009-05-27T08:52:00.000-07:00

Brianna is too tired to post on the blog today, so her dad Matt is going to bring you up to date.

Notes from Matt:

It's been a while since I have posted an update and Jennifer has done a great job keeping everyone informed of what Brianna is up to. This morning she was at Edward Hospital ER because she had a fall and hit her head and was experiencing alot of pain early this morning. I am happy to report that Brianna was discharged this morning after having a CT scan of the head and spine done and nothing alarming was seen by the doctor or the radiologist. Just the same we will be taking the scans with us to Children's Memorial when we go next for those folks to look at the scans as well. I couldn't agree more with Jen that parents need to take the reins sometimes in these situations because it is the parents that know the child best.

This past weekend was a nice one as we had dinner on Friday with her Grandma Pat and Aunt Kate and Great Grandma Cochran at Boston Blackies. It was nice for her to be able to visit with her Great Grandma as she lives downstate and doesn't get to visit as often.

Saturday was a pretty relaxing day for her as she just doodled and colored with her youngest sister Gianna. She went home Saturday night back to Jen's to go support some runners that were going to run in her honor but she didn't feel well enough to go.

Sunday afternoon there was the final blue hair extension fundraiser in Algonquin. It was a great succcess as Uncle John and Aunt Ania organized with others in the Algonquin community! Special thanks to Susie McDonnell for opening up her heart and home to make it all possible and Jane Morales and Mary Vogt for all of their support and help. Also Andi Butler for posting announcements on the Eastview PTO site. Denec Cardelli and Beckey Metzger donated some items to be raffled off. And like to thank the "People of Algonquin"... its truly been amazing to see the love and support of all different communities come together to support our daughter and the fight that she battles every day.

There have been countless people that have been supporting and giving their love and prayers each and every day. We can't thank you enough.

Just as a reminder to those that live near a Jewel Food Store and might be doing some shopping for the upcoming Memorial Day holiday... don't forget to go to the www.curebrianna.com website to download the form for the Jewel Shop n Share fundraiser for Brianna. That will be happening today and tomorrow so go to the website and download the form and Happy Shopping!
Also check out the Relay for Life fundraiser for the American Cancer Society where Brianna's Brigade will be participating! (Again see the www.curebrianna.com website for that link ) Join in and participate by either running or walking with us and/or donating (and no you don't have run the entire evening!! ha ha)

Brianna has some busy days over the next couple days so Jennifer will be doing the next update after she is done with her activites on those days.

Thanks to all for your support and checking in on Brianna!

Matt, Jennifer, Brianna and the rest of the "gang"

Drive the STUPID TUMOR to Outer Space! - May 15

2009-05-15T07:50:00.000-07:00

Hi Everybody -
I finished the first week of radiation and I am really tired. Mostly now I sleep because it really makes me feel lazy and tired all the time. It also makes my throat burn and the steroid stuff makes me hungry so I am always starving! The only thing that feels good to eat is stuff like pudding and ice cream and milk. Then they started giving me medicine to make the burning stop and IT BURNED TOO! So now they changed it and its a little better. I really wish I felt better right now. I am so tired of being SICK! Mom came up with an idea that made me laugh so I hope everybody will join in. Everybody can send my mom golf balls and I'm going to color them like tumors with faces and stuff. Then my stepdad and mom are going to go to the driving range and hit the golf balls as far as they can! That will be so cool! Maybe the real tumor will get the hint!!!
Another goodo thing is that Command Scott Altman sent me an autographed picture and letter and one of his patches and when he goes up in the space shuttle he's going to say a prayer for me. Well that's all I can write for now. Thank you for reading this and send in some golf balls so my parents can whack them!
Love,
Bree

Notes from Mom:

“STUPID TUMOR”---Lately, Brianna has been struggling with all that is going on…she is becoming impatient and wants to feel better-NOW!! I mentioned in the last update her drawing of the “stupid tumor” so I came up with an idea and if you would like to help out, please feel free!! We are going to collect as many golf balls as possible and Brianna is going to color them with faces, labels, etc. Bob and I (David and Leanne-you are more than welcome to join us) will go to a driving range and smack the tumor/cancer golf balls. Brianna should get a kick out of watching the spectacle! I presented the idea to her and she laughed. I am sure she will laugh even harder watching me try to swing a club after taking at least a 3 year sabbatical! Feel free to donate golf balls or even send us your own “stupid cancer” golf balls labeled with anything you want us to cream (to our home address) I can’t guarantee that my drives will amount to much, but Bob will definitely break a record with the added incentive of smacking the tumor/cancer golf balls.
SPACE SHUTTLE---Many of you are probably aware of the space shuttle launch this week. Well, Commander Scott Altman knows Brianna and is saying some prayers while on the mission. He sent Brianna an autograph picture, letter, and one of his patches and had is specially framed. Please pray for Scott and the crew so that they have a safe return home. We hope to be able to meet him someday soon! We are including a link to an article about the mission.
http://news.yahoo.com/s/space/astronautsspotsmalldingsonshuttleheatshield
RELAY FOR LIFE---We have put together a Relay for Life team (Brianna’s Brigade) supporting the American Cancer Society. The event is to be held on June 5th at Neuqua Valley High School in Naperville, IL. Max Lacewell also has a team (Little Dude’s DIPG Warriors). Little Dude’s team is currently leading in the fundraising efforts and our goal is to have both teams finish in the top two! If we can do this, we will bring awareness to a very rare form of pediatric cancer. We are including a link to our team page in case you are interested in joining our team or making a donation to Brianna’s Relay team. Our goal is to raise at least $5,000 and after just a few days we are already 25% on our way. Of course, we want to far exceed that amount and hope we can count on your support! Feel free to send the link to any/all people you know as this event it to support the American Cancer Society and to further research to find a cure for ALL types of cancer.
http://main.acsevents.org/goto/briannasbrigade
THANK YOU’S---Finally, we want to thank everyone for their prayers and words of encouragement. We are blessed with a huge support network and our family has played a very important role. I wish we could thank every individual for everything they do, but the outpouring of love is overwhelming and it is so difficult to list them all. However, a few people need special thanks for their support over the last several weeks. Thank you to Grandma Close and Grandma Siemann for helping take care of Brianna and all of our needs. Whether it is running errands, coming to visit, or sitting with Brianna or Kaitlyn, we greatly appreciate your help. Aunt Jackie and Aunt Georgia have been very supportive as they keep in touch asking how things are going and also visiting Brianna or treating her to an outing so she can get out of the house and enjoy herself. Bob has been a great comfort to Brianna when she struggles emotionally, not to mention a huge help with daily activities, appointments and as emotional support for me. Leanne, thank you for your 7 gifts in 7 days gesture for Brianna, you are amazing! Finally, thank you to the McCoy and Schmidt families for their kindness and generosity…we are incredibly grateful!
GOD BLESS!!

Brianna's Parents

New Pictures - Monday, May 11

2009-05-11T09:03:00.000-07:00

Hi everybody

Mom just put some more pictures up. Yesterday was a lot of fun. I felt pretty good so we got to go out for breakfast like we do every year. We didn't go to a buffet cause a lot of people have the flue so we went to Hugos Frog Bar instead. Then we went to the Naperville Riverwalk to take pictures.After that we went to Haley's volleball game and Home Depot and Target. I got to ride in the wheelchair cause I get so tired but I still get to go places with my family so thats cool. Sometimes Mom and my step-dad want me to get a little bit more excercise so I don't get too weak but they don't make me walk all the time.
After we got home I rested and colored in my notebook and Mom and Kaitlyn planted flowers. This week I start radiation and Mom told me it might make me swell but the good part is that after it starts working maybe they can let me stop taking the steroids that make me get really puffy and maybe my back won't hurt so much.

I hope everybody had a great Mother's Day and loved thier mom as much as I love my mom.
I think every day should be like Mother's day.
Love,
Bree

Mother's Day weekend - Friday, May 7

2009-05-11T08:47:00.000-07:00

Hi Everybody,

I started getting radiation treatments on Wednesday. We went to the Dupage Onclogy Center and they did a scan and radiation. I have to go there 30 times. It's hard to get up so early cause they do it at 7 oclock in the morning, but I can sleep in the car on the way there and on the way home. The radiation only lasts 15 minutes and we get home at 8 and I get to go back to bed. YAY! Every week I have to go to Childrens Memorial hospital for stuff and every week a nurse comes to our house to see me. Then the social worker comes and a music therapist but the good part is I only have school at home 1-5 hours. Also a psychologist comes and a doctor and if anything else happens there will be other stuff. I get tired all the time and its from the radiation. Sometimes I lose my balance and my waist and legs and feet get numb. Today Mom had to help me buckle my seatbelt because my fingers were numb. It's weird. Now I get to ride in a wheelchair if I'm really tired so I can go shopping or go for a walk without getting to tired. I'm supposed to get exercise too so I don't get to use it all the time.

A lot of the time I like to doodle and draw and write and color. I love gel pens and I drew a picture of the stupid tumor. I put beams of radiation on it and chemo and hope and faith. After everything attacked it I drew it all little and crying and I was laughing and saying Ha Ha You Shrunk! Then I wrote down all the stuff since they found the tumor that is wrong with me. Here is my list.
headaches, nausea, sore knees and ankles, backaches, throat and espohagus trouble, strep throat, ingrown toenails, dry skin, itching, back and shoulder pain, knee weakness, ankle weakness, tiredness, laziness, infected/damaged fingernails, hair loss, weight gain.
But after all that stuff, I wrote really big Pain is overrated! and I'm over pain! Most of the stuff I write about is happy cause I love to be with my family and friends and come up with ideas about fun stuff to do. Like go to Medieval Times or go shopping or see a movie.
Well thats all for now,
Love, Bree

Note from Mom Jennifer:

The list of symptoms is from a child who very, very rarely had anything more than a cold!! She also did not list the numbness/tingling, difficulty sleeping, and some others... 99% of her journal is happy, cheerful drawings and entries.
We are still trying to get Brianna out daily for either a lunch, quick errand, or enjoy family or friends' visits or outings. Brianna is in good spirits and wants nothing more than to enjoy time with family and friends as she brainstorms ideas for outings. She expresses this to me and I noticed it's included in various entries in her journal.

Thank you for your words of encouragement and for keeping us in your thoughts and prayers. Especially, since the last update. I am definitely frustrated with how things have been going these past few weeks, but plan on taking a huge step to voice my concerns and be the biggest, loudest advocate for Brianna. "Mother Knows Best," and I will take the lead from now on and will not take no for an answer as my gut has been right on this entire journey. If you mess with or threaten my children (and in this case compromise their health) you will get an earful. I have never had this type of agressive personality, but since dealing with Brianna's illness I no longer believe that doctors have all the answers. Having doctors who have young children themselves make all the difference in the world. Dr. Ellison and Dr. Baker treat Brianna as they would their own children. Please pray for all children fighting cancer and for their doctors to be blessed with compassion and empathy necessary to deal with these children and their families.
Have a very Happy Mother's Day and may God Bless you and your children! May you enjoy this year's holiday with a new perspective and appreciation for the precious children God blessed you with...I know this will be the best Mother's Day ever!!

Brianna's Mom Jennifer

What happened today - April 5

2009-05-06T09:11:00.000-07:00

Hi everybody,
We went to Children's hospital today and saw some doctors again. Everybody is real happy cause I haven't been as tired as they thought I would be. Mom says the doctors are surprised because I feel pretty good, but they want to start radiation treatments real soon and give me more steroids just in case. Tomorrow will be the first scan and radiation treatment. I'll have it every day except Saturday and Sunday for 6 weeks. I sure will be glad when this is over with! It's a bummer cause me and my family were going to go on a trip in June but it looks like we won't be able to go now. I feel bad cause I got sick and it ruined the vacation but Mom keeps telling me it's not my fault. We were supposed to go to Mexico, but it's too dangerous so then we were going to the Dells but now we can't. Sometimes I feel like I'm ruining everything. Mom keeps reassuring me that it's not but I still feel bad. I just wish this would all go away and get over with so we can go back to normal! Kaitlyn and me really had fun at Disneyworld and all the other things we got to do. But now we don't get to eat out because of my special diet and when I hurt and get tired I just feel sad that I'm keeping everybody from having fun. Mom and me did get to go to the baseball game with my BFF! It was really fun. I don't care about baseball. It was just fun to be with my friends like old times.

So maybe this will get over with soon! I sure hope so. Thank you for praying for me and for all the stuff you do.

Love,
Bree

Treatment Decision - May 5

2009-05-05T08:11:00.000-07:00

Today I am letting my Mom write the blog because it's all about stuff I don't like to talk about. I want so save my energy for the fun stuff we're gonna get to do and I get tired. Thank you for reading this.
Love,
Bree

Note from Mom (Jennifer):

We decided to seek radiation therapy at Central DuPage Hospital in Winfield, IL. Brianna's home nurse and the doctor who we consulted with discussed Brianna's needs with DuPage Oncology Radiology and with Dr. Jason from Children's. They assured us that they would not recommend her receiving treatment there unless they were absolutely certain Brianna's needs would be met. Avoiding the M-F commute to Northwestern for 6 weeks is a priority as we would like to make the experience the best for Brianna by allowing her to maximize time at home with family and friends. She will go this Wednesday for the simulation where the radiologists will look at her scans and calculate the degrees of radiation, etc. Her first radiation treatment will begin next Monday. We are anxious to get the treatment started as she has been experiencing numbness in her feet, waist and tingling in her hands. She no longer complains of headaches and her back pain has become manageable with the increase in steroid medication. Brianna has adjusted to her regular morphine medication as she is not as drowsy as she was over a week ago.
Since Brianna's pain has become manageable and her energy has improved, she has been able to enjoy more activity. We have to keep a close eye on her to make sure she doesn't do too much, but she enjoys visits from friends and family and even ventures out for short periods of time. She enjoys going to an occassional lunch or shopping. This past weekend she was able to enjoy time with Aunt Jackie, Grandma & Grandpa Sharp, Aunt Julie, & Aunt Faith and Aunt Lisa. Aunt Jackie treated her to Pizza Fusion and frozen yogurt, Aunt Julie and Aunt Faith traveled from Kentucky and Champaign, IL to spend the afternoon with her (unfortunately we had an afternoon appointment, but they tagged along, happy to just have time with Brianna), and they met up with grandma and grandpa Friday evening. Brianna and Kaitlyn enjoyed a weekend with their dad and his extended family. The weather was beautiful over the weekend and Brianna was able to enjoy quality time with everyone.
Grandpa & Grandma Sharp presented Brianna and Kaitlyn with incredibly special gifts! They gave Brianna a rosary that was blessed at the Vatican by Pope John Paul, while Kaitlyn's rosary was blessed by a priest in Auschwitz, Poland! I am positive that Brianna will be carrying the rosary with her at all times...an unbelievable gift and we can not thank them enough! Grandma and grandpa were able to witness Brianna's faith because the Spinello family hosted a special mass at their home. Matt admitted feeling inspired by watching Brianna's attentiveness and sense of peace throughout the mass. We are grateful for the blessing and want to thank everyone who made it an extra special occassion.
Today, we will be visiting Children's Memorial for Brianna's appointment. She will begin the new chemo medication which will be in pill form so today is a routine exam, blood work, and vitals. Today is going to be AN EXTRA SPECIAL DAY because we will have the company of our very close friends. Brianna's BFF and her family are Cubs fans. We gave them an offer they couldn't refuse...free tickets to the Cubs game. If you are one of my fellow Sox fans (Siemann family, Sue & Phil, Katy Arme, etc.) please know that I am wearing black and plan on enjoying only food and sun!) We had to make last minute plans as Make A Wish called and offered us the tickets. I decided to call back after turning them down because I realized this would be a wonderful opportunity for Brianna and her friend to have a great time together...and it was important to me that I have someone who knows their way around the city!! Bob is traveling out of town and I tend to have trouble with the Garmin on occassion. I must apologize for "tricking" them into driving and I would like to thank them in advance for being our chauffeur. Thanks to our friend's offer to drive, Brianna and her BFF might be spared from hearing inappropriate language since it is a well-known fact that I can't stand traffic and "idiot drivers."
Please pray for a "good day" for Brianna so that she may thoroughly enjoy the occassion with her best friend. We hope her symptoms remain stable or improve and that her energy level allows her to participate in occassional activities/outings with friends and family.
We continue to keep all of our friends and families in our prayers. Max Lacewell, Kole Miller, Liam Reilly, Caleb Spady, Ravyn Finch and all the DIPG warriors!! Please pray for daily strength and courage for each of these children and their families. This is an incredibly difficult road and each of these children and their families allow us to be reminded of what's truly important and they inspire people every day!
God Bless!!
Jennifer and all of Brianna's Family

Just Tell Me What I Gotta Do - April 30

2009-05-05T07:17:00.000-07:00

My parents told me that the cancer is in my spine and I have to have radiation and chemotherapy for a few weeks. It isn't bothering me too much cause I can still go up and down stairs and walk and run a little bit. Sometimes my back hurts now instead of my head. I get a little more of the steroid medicine so I get hungry more. Sometimes I get to have regular food instead of my special diet. I guess I'm getting used to the organic weird stuff cause when I eat regular food I don't feel so good. I told Mom I would listen to her from now on cause she warned me that I wouldn't feel good if I ate regular food. She was right! My mom wants to write about my treatments so that's all from me. Thank you everybody for all your prayers.
Love,
Bree

Note from Mom Jennifer:
"JUST TELL ME WHAT I GOTTA DO!" Brianna's words once again after we told her that the cancer spread to the spine and she would have to undergo 4-6 weeks radiation and take a new chemotherapy medicine. She once again took the news better than we would have expected and that allowed us to breathe a sigh of relief as we felt like we were re-living the original diagnosis all over again. The MRI showed that the cancer spread through the entire spine and the doctors are amazed once again that Brianna's outward appearance shows no signs of the seriousness of the MRI results. God is blessing Brianna with unbelievable strength and courage as she is still bouncing up and down stairs, walking, and even running/jogging for a little bit (like to the neighbors house) Her back does give her problems and has taken place of any headache she experienced previously. We increased her steroid medication once again and I think we are beginning to see a slight increase in her appetite. She has not been complaining of her diet as much since we decided to allow an occassional "break." She has been so completely miserable for so long and no matter how many times I found a healthy alternative she had convinced herself that organic tastes terrible (even though it is the opposite). Since we let up a little bit and give her some ownership over her diet she actually makes the healthy choice most of the time. She has also discovered that her body is used to the healthy, organic, limited sugar and dairy diet so when she tries to eat anything else she feels terrible. I warned her on two occassions and sure enough, she felt so bad she assured me she would listen to me from now on...
We had a great religious retreat last weekend and had a special meeting with Mother Nadine from the Intercessors of the Lamb. We left with a wonderful peace after Mother Nadine took time to pray for us and share her insights. Though Brianna was only able to make it through the first half of the day Saturday she did pick up enough to ask questions and share what she learned from the experience. At the retreat I had a flashback to one of the best memories of Brianna at 3 or 4 years old. She was supposed to be taking a nap on my bed but I heard her talking and playing around. I decided I would crack the door and peek to see what she was up to. She was sitting on her knees with a baby doll blanket draped over her head. She was holding her baby doll wrapped in "swaddling clothes" and was singing "Away in a Manger." Her pre-school class was learning the song for their Christmas program and Brianna decided she would practice the song while pretending to be Mary. No one had taken on that role so it was beautiful to see her acting out the song. Of course the video camera was not working...just liked it wasn't working when she fell asleep on the toilet at 3 years old!! (Don't let her know I shared that-we have a snapshot to prove it!)
Brianna spent several days sleeping and was having a difficult time adjusting to a new medication schedule and new treatment. However, the past three days she has been in better spirits and has had more energy and less pain. Today we went out to lunch and a movie with Dr. Ellison and her four kids (Aidan, Talia, Logan, and Gavin.) Brianna and Kaitlyn love little kids and enjoyed giving them special gifts. Brianna created a mermaid painting titled "Talia," (Dr. Ellison's daughter's name) and she did a beautiful job! Talia was very excited and we were able to take photos of the excitement and of Brianna autographing the creation for Talia. Brianna created the painting with pink and purple which will be the colors in Talia's new bedroom. We found out that Logan said, "Well, I like Nemo." and Aidan said, "I like Star Wars." Looks like the orders are going to start piling up. We must thank Dr. Ellison for a wonderful day as Brianna was out from 10:30-4:00 feeling great and loving the company!!
Tomorrow we are meeting with the DuPage Oncology Radiologists out of Central DuPage Hospital in Wheaton, IL. They mostly work with adults, but have also worked with children. Our home nurse and the doctor we are assigned for home health both agree that this recommendation wouldn't happen unless they were 100% comfortable in their ability to treat Brianna. This is wonderful news as it will save us a daily commute to Northwestern as radiation treatments are Monday-Friday for 4-6 weeks.
I want to thank Lori Miller (Kole's mother-our little buddy at St. Jude) for the proverb she emailed to me after receiving the latest round of news. I am including it for you as it gave me peace once again that we can continue to remain strong and hopeful throughout our next uphill battle. Brianna, Kaitlyn and I have been listening to a Miley Cyrus song that has great meaning to us right now...just like the Jonas Brothers song, "Little Bit Longer." Miley's song is titled, "Climb." The lyrics are perfect!! Thank you for your support and please continue to pray for all of our DIPG warriors (Kole, Max, Liam, Caleb, Andrew, and many others)
Trust in the Lord with all your heart and lean not on your own understanding. Proverbs 3:5
God Bless!

Brianna's Family

Another Step in the Journey - April 28

2009-04-30T13:02:00.000-07:00

Hi everybody -

Yesterday Mom took me to Edward Hospital for another MRI. This one lasted 3 hours but I was asleep. When it was over we went out for lunch. I was pretty sick to my stomach so we went back home and I went to sleep.

Note from Brianna's Parents:

Children's Memorial read the scan today around midday and called shortly thereafter to give the results. The MRI confirmed what we were pretty sure was occurring. We found that her pain along the spine was due to the cancer spreading to the spine. To say that this news was a surprise would not be accurate because Brianna was telling us of her backache pain that was primarily along the spine.
Brianna will be temporarily stopping the Avastin/CPT-11 treatments and instead be starting about a 4 - 6 week radation treatment plan that will be focused on the spine. We will be monitoring her pain level and giving her the appropriate dosage as directed by the doctors. We are going to be figuring out where in the next couple days. Hopefully we can find a facility closer to home that she can take the radiation treatments as opposed to driving 1 1/2 hours each way to Northwestern Memorial Hospital where she could get radiation treatments if we wanted to.
This weekend Brianna will have her Grandma and Grandpa Sharp and her Aunt Faith and Aunt Julie come into town to visit this weekend. Also her Aunt Lisa and cousin Braeden and Hailee will be flying in town Thursday night and staying the weekend to visit with her as well.
We appreciate all the thoughts and prayers for Brianna as those are what help sustain us through each day. We appreciate all that everyone has done for us as a family and will continue to do for us as a family. It can be hard to stay focused at times but everytime we see Brianna still having good days where she is her cheerful, bubbly smiley self we are reminded that we have the strongest daughter in the world. She has been an inspiration to us as her parents and we are thankful that we are lucky enough to be her parents. She is truly amazing.
Please keep Brianna, Max, Kole, Alexis, Andrew, Caleb and all the children that are the warriors that fight the monster that is pediatric brain cancer every day. We are in awe of all of those children!
Thank you again for stopping in to check in on Brianna !!!
With hope and gratitude,
Matthew, Jennifer, Brianna and the rest of the family!

Healing Prayers over the Weekend

2009-04-24T07:17:00.000-07:00

Hi Everybody -

Mom and I are going to a religious retreat with Aunt Georgia. I get to meet a lady named Colleen Willard. She was healed from a brain tumor they couldn't operate on. I also get to meet Mother Nadine from the Intercessors of the Lamb in Omaha and a visionary. We are going to pray a lot and it will be really good to be with people who have strong faith.
Mom can explain it better.
Love,
Bree

Note from mom Jennifer;

This weekend at the retreat we will be focusing on God's mercy and for the laying of hands to physically heal Brianna. Please join us in our prayers this weekend that Brianna will be blessed with God's mercy and grace!
I previously mentioned how Brianna has deepened her faith and that her personality is one to always put others first. Two more examples I will share: First, Brianna was in the ER one night with an excrutiating headache and she said, "Mom, I want to say something, but I can't." I said, "What do you mean?" She responded, "I really need to say something, but God will be mad at me." I finally convinced her that she can tell me and she stated, "I feel like hell!" Another example was with her most recent episode which was the worst ever as she was not able to find any relief. She noticed that Bob had become teary eyed and grab him and told him how much she was sorry for upsetting him! If you recall, she did that to me as well...based on her level of pain it's hard to believe she could think about our feelings.
Today, Brianna and I are going to visit my school (Lincoln-Way North High School) so we can deliver Brianna Brigade t-shirts to visit and meet with a lot of my friends who have been an unbelievable support network. They have been so generous and kind during this difficult period and it is very important for us to give and receive LOTS OF HUGS!!
We had a very speedy delivery of the chicken ginger soup last night, secretly delivered by the "Soup Elf." Brianna could not wait to eat it so she decided it would be her afternoon snack! WOW, that was fast service as I only posted a request for the recipe and several hours later the fresh soup was delivered!! Thank you!!
With the long weekend religious retreat and the fact that Brianna will undergo a 3 hour MRI for her total spine, you will have to wait until Monday afternoon to hear from us as to how well things went for us.
Finally, a friend of the family, Katie Slou is organizing a fundraiser where we will be selling spirit cups. I am including her email as a contact in case you have any questions or are interested in obtaining an order form. Proceeds from the sale of the spirit cups will go towards the "Brianna Sharp Benefit Fund." We would like to thank you in advance for your support. (I hear the cups are REALLY cool and hope that you will consider contacting Katie. Her email is listed below:
logan216@sbcglobal.net (Katie Slou)
God bless you all for your kindness and generosity. We are most appreciative of your prayers and words of encouragement as they allow us to face each day with amazing strength and courage. Brianna had a good day yesterday (Wed. she slept most of the day) as Aunt Amy and her cousin Colleen treated us to lunch at Pizza Fusion (DELICIOUS) and she got her exercise by helping me shop at Whole Foods.
"Patience is having faith in God's timing!" Thank you Joellyn for the line about how God laughs whenever anyone tries to spell out timelines. It made me laugh and helped me realize that the news we received from doctors giving us a timeline is a joke!! Only God knows His plans for Brianna and the fact she is so strong tells us that anyone who is given a timeline needs to be patient, take things one day at a time, and live every moment to the fullest, while continuing to believe that His plan is perfect and Brianna will always be safe!
God bless!!Jennifer

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Fundraiser on Saturday - April 25

2009-04-24T07:03:00.000-07:00

Note from dad Matt -

On Saturday from 1:00 - 4:00pm at Danny's Pub and Grill in Naperville we are having a fundrasier for Brianna! Its $20 per person( $10 goes to Brianna) which includes 2 drink tickets for soda,domestic draft or well drink and lunch - burger,chicken or deli sandwich with french fries, soup or salad. We will be raffling off some great prizes. Come on out! It should be a great time! If you can't make it and still want to help then go to www.curebrianna.com to find out how!
Host: Danny's Pub and Grill/ Lori Young-Higaki
Date: Saturday, April 25, 2009
Time: 1:00pm - 4:00pm
Location: Danny's Pub and Grill
Street: 1550 N Rt 59
City/Town: Naperville, IL
Also Good Luck to the CureBrianna run team that will be running in the ABTA 5K walk and run tomorrow at Soldier Field in the morning! I know that I couldn't pull that off well because I was out of breath just jogging from the Grizzly House to the Chili Care Center at St. Jude!
Have a great day everyone!
From Brianna's dad, Matt

First Day of New Treatment - April 21

2009-04-24T06:57:00.000-07:00

Hi everybody -

I started my new treatment today at Children's Memorial hospital. I like St. Jude a whole lot better. First of all, it took almost 2 hours to get to the hospital cause there was so much traffic. I was bored ALL day! I wish I could just go back to St Jude. Plus on the way home I was really sick to my stomach but they said its the medicine that does that. After a while I felt better but I wasn't very hungry. I'm just tired so I'll let my parents finish this.

Note from mom Jennifer:
Brianna is right, we were definitely spoiled at St. Jude. We are not saying that Children's is not a wonderful place, but what you experience at St. Jude can not be put into words. While heading home during rush hour traffic, Brianna said she would rather fly back and forth to St. Jude and that she doesn't like CMH. I am sure her irritability and most of the words can be chalked up to her emotions/feelings pouring out as she begins a new treatment. She felt terribly nauseated on the way home but did not vomit. As frustrating as it is to listen to Brianna complain about anything and everything I have remind myself that it's not Brianna...it's the tumor and/or the medication. Her nausea only lasted for an hour or two and later that evening she was talkative and laughing hysterically as she watched Funniest Home Videos. She did not feel up to eating any dinner so she had some applesauce before bed. Brianna slept with me and as she was falling asleep began listing all of the foods she was craving. Around 2 AM she woke up and decided she was ready to eat. I went downstairs to get her a bowl of cereal and some nausea medicine. She slept off and on until 11 AM where she finally perked up and made Miso Soup with Seaweed for lunch. (I find it hard to believe that she can complain about every single thing on her diet that Bob and I find delicious, yet she enjoys the most disgusting soup I have ever smelled or tasted!!)
IMPORTANT: THE ANONYMOUS CHEF OF THE GINGER, CHICKEN NOODLE SOUP LEFT A COUPLE MONTHS AGO IN OUR COOLER NEEDS TO IDENTIFY THEMSELVES OR LEAVE AN ANONYMOUS RECIPE!!! IT'S BRIANNA'S FAVORITE DISH AND SHE CONTINUES TALKING/ASKING ABOUT IT!!
I am going to let Matt take over and talk about the medical part of it all and what he knows....

Note from dad Matt -
Alright.... I guess I am the relief pitcher here so here it goes.
We got in at 8:30am and met with a nurse to take all the vital signs, height, weight, etc. Then she had a blood draw to get sent to the lab so that we could make sure her WBC and Platelet levels were good enough to start treatment. That took about a half an hour before the results came back and all was fine there.
We were lead back to the Day Hospital where Brianna was hooked up an an IV to make sure she was hydrated with fluids for an hour before the CPT-11 (one component of the treatment) was to be administered. CPT-11 is also known as Irinotecan which is meant to damage the DNA and RNA in each cancer cell so that it doesn't have the ability to divide and multiply. That takes about an hour to administer and then more fluids were given before the Avastin was admisitered and that again was a little over an hour. Finally a fluid IV and an antibiotic was given and that took 2 hours so needless to say it was a rather long day. For the next day or two she may experience some nausea and fatigue.. there are other side effects but those two are the most common.
One thing that Brianna was given was MC Contin which is a controlled release of morphine and that should help her feel as comfortable as possible. She has her regular dosage of pain meds if that controlled release doesn't control a larger pain episode that Brianna might experience.
We are planning on doing an MRI of the spine just to get some more insight into what might be causing her back pain. We are still committed to continue to look at all options including biopsy. I believe that the only way to get to a cure of this disease to biopsy the tissue to see what is actually in the tumor. Other countries like France and Germany already do it as a matter of course when a patient is given this diagnosis. We would just need to find a doctor in the U.S. that would be comfortable with doing the procedure.
We will continue to keep everyone updated as we move forward but we really appreciate everyone stopping in and offering their kind words of encouragement. It gets us through the rough days when Brianna is not feeling so great. It means alot to us.
Matt, Jennifer and Brianna

New Photos and New Treatment - April 20

2009-04-21T09:30:00.000-07:00

Note from Brianna's mom, Jennifer:

Well, I was finally able to post the NEW PHOTOS from Brianna's surprise 13th birthday party along with her birthday event with Kole (our DIPG buddy from St. Jude who turned 5) and the birthday outing for Brianna and Kaitlyn with Ms. Beauregard at Color Me Mine. I also posted two pictures as proof of Kaitlyn's words written on the patio. She wrote the most loving note to Brianna. You will have to click on the larger images if you want to see the entire picture for each thumbnail. We hope you enjoy as you can see how wonderful she looks and how incredibly happy she was at her surprise party!! Thank goodness we postponed the St. Jude trip for one more week as we were able to enjoy her 13th birthday without any knowledge of the tumor progression.
Unfortunately, we have had a rough two days as she experienced a painful episode Sunday evening and was not feeling well for a majority of the day today. She slept most of the day today with a little energy burst in the early evening when she decided to paint. Around 8:00 this evening she experienced her worst episode ever where the morphine didn't kick in for at least an hour and she was begging for an ambulance to take her to the hospital. It broke our hearts is a huge understatement, as there is nothing we can do but wait for the medicine to kick in. Where it usually only takes 10-15 minutes, tonight it took at least an hour before she found relief and even then her pain was at a 7 for another hour. Recently, her pain is mostly in her back (between her shoulder blades) and when it gets really bad the pain shoots into her head causing the headache to become a 10. Bob and I feel helpless as all we can do is hold her, pray for her, and anxiously wait for the nurse to arrive. The pallative nurse is not left to do anything but talk with her, check vitals, and record the information in the chart. She stayed long enough to make sure Brianna was comfortable and o.k. with her leaving.
After these past two days we can not wait to get to Children's to begin the NEW TREATMENT tomorrow. Please pray that all goes well and that the new treatment proves to be effective and also has limited side effects that she will have to deal with. We are in for a very long day and hope that all goes well. A little prayer to avoid the evening rush hour would also be helpful! :-)
Thank you for your outpouring of love and prayers over the past week and a half as I have been blessed with a huge amount of peace! I have mentioned to some people that I could say I am in shock or denial, but I know that it is neither...it is a grace that is something I can not put into words and I am left feeling that Brianna is now (actually always was) 100% in God's hands and I wouldn't have it any other way. We will pray for a miracle healing, pray that He is guiding the doctors caring for DIPG children, and we will fight as long as she is willing to endure and has the energy and spirit that still shines though. We will also pray that our will is one with God's.
We will be attending the religious healing retreat this weekend and will have a visionary pray over her, along with Colleen Willard (who was miraculously healed from an inoperable brain tumor), and Mother Nadine from the Intecessors of the Lamb in Omaha, Nebraska. Please pray that Brianna be blessed with a healing in mind and body! God bless you all for supporting us through this difficult journey! We are eternally grateful for all of your kind words and unending prayers!
God Bless! Jennifer

A Weekend to Remember - April 19

2009-04-20T07:34:00.000-07:00

hi everybody!

This weekend was great weekend to remember! Friday night my Aunt Lisa and Uncle Brad paid for a presidential suite at Indian Lakes Resort in Bloomingdale and Kaitlyn and me both got a pedicure and a manicure. Then we rented a moved and got to order room service for dinner! We felt like movie stars it was so much fun! Saturday morning we ordered breakfast in the room and then we played miniature golf and THEN we had Swedish massages!! We LOVED getting those massages! Dad said he would never forget this weekend and he really has to thank my Aunt Lisa and Uncle Brad Ballantine! We love you guys! Thank you for giving us a great night!

Saturday we went to Grandma and Grandpa Spinello's and had a great day. ALL us girls got their hair done by Teresa and Aunt Ania took came and take some great pictures of us and our family!
Well, I'm tired now so my dad can tell you the rest.
Love, Bree

Note from Dad Matt:

I would like to thank Ania taking time out of her busy weekend to make this weekend special and I can't thank her enough! I would also like to thank my inlaws John and Madeline for providing us with a beautiful background that no other portrait studio could ever provide!
After spending that time at their house we went to Dave and Busters and had an awesome time! We ate and played games and Brianna was actually starting to experience some pain at the start of the evening but actually forgot about it when she starting playing games! She even said that it was the best place that she had ever been to play games! Hopefully we can do Dave and Busters Part 2 when Grandma and Grandpa Sharp come up in two weeks because they are looking forward to enjoying a fun filled weekend with their granddaughters.
Sunday was the Blue Hair for Brianna Day! ( as their youngest sister Gianna calls it) My mom was gracious enough to open her home for the fundraiser and so many of Brianna and Kaitlyn's friends and even some of her teachers came out to support Brianna! Earlier in the day she was rather tired but once she saw how many of her friends came to support her she was really happy and perked right up! Ania came again to take some great pictures and Teresa came to put those Blue hair extensions in everyone's hair with help from her daughter ( who is also named Gianna!). It was a great day and we all had a great time! Even I got a hair extension but don't worry I won't post a photo! I don't think my wife likes to look at me with it in my hair!
I would like to thank my wife, Maria for planning this fundraiser! She and Teresa put alot of planning into it and Maria got the food and organized it all! I would also like to thank Brianna's teachers and some staff that came to the event. It really warms the heart to see all that support that Brianna got! Some of the Romeoville Rebel volleyball players came to support Brianna as well! Thank you and we appreciate all of your support!
Brianna's Grandma Close and Aunt Jackie and cousin Lauren came to show support as well. Brianna always loves to spend time with them and was excited to see them come to the event. Brianna was growing tired towards the end of the event and it was time to head home with her mom and Bob. We really appreciate all the help we have received from everyone!
As many of you know, Brianna starts her new round of chemo on Tuesday morning at 8:30. It will last about 5 hours and be administered through her port. We ask that all of you have her in your thoughts on that day as we enter this next part of our journey.
An update will be posted on Wednesday after we get through the events of Tuesday!
Thank you all stopping in and checking in on Brianna!
Thank you for all your support!
Matt, Maria, Brianna and the rest of the gang!

Kaitlyn's Writing - April 18

2009-04-20T07:30:00.000-07:00

Hi everybody. The first part of this is from my sister Kaitlyn.
Mom saw her writing and so she wanted to put it in here.
Love,
Bree

From Kaitlyn:
BRIANNA ROX AND WILL ALWAYS BE LOVED!!!
BRIANNA IS THE BEST SIS ANYONE CAN HAVE!!! AND I LUV HER WITH ALL MY HEART! HOPE SHE GETS BETTER SOOOON! LUV LUV LUV LUV LUV LUV LUV LUV UUU W/W/ ALL MY HEART! I LOVE BRIANNA AND I HOPE THAT SHE GETS BETTER! I WILL PRAY AND HAVE FAITH THAT SHE WILL GET BETTER!!!!!!!!!!!! I LUV BRIANNA WITH ALL MY HEART AND ALWAYS WILL KS

From mom Jennifer:
As I was sitting on the patio yesterday afternoon/evening I noticed that Kaitlyn wrote something in chalk around the entire perimeter of our concrete patio. The above are words Kaitlyn wrote (without a single edit on my part) I walked the entire permimeter taking pictures to capture the entire short story. (If I did not have proof, Brianna would never believe it if I told her...even though I have two other witnesses!)

She signed her initials inside a heart. Anyone that is close to Brianna and Kaitlyn know that they have a "love / hate" relationship, as many sisters have while growing up with a sister close in age. They bicker and poke fun of each other constantly! Well, now I have proof in photos in case she doesn't believe me or my two witnesses. Thank goodness I discovered the words before a good rain washed it away.
It melted my heart to read those words. Please do exactly what Brianna's younger sister (11) says:
"PRAY AND HAVE FAITH THAT SHE WILL GET BETTER!!!!!!!!!!!!"
God bless you and thank you for all of your prayers and support!
PS-Our other computer is finally working so I will be posting the long awaited pictures of Brianna's 13th birthday, picture with our buddy Kole, and I might even include a pic of Kaitlyn's words!

Love to all from Mom Jennifer

New Steps in the Journey - April 15

2009-04-16T10:38:00.000-07:00

Today my dad is gonna write the blog because it's all about the medical stuff and I don't understand a lot of it. Thank you for visiting my website again.
Love,
Bree

Note from Brianna's Dad (Matt):

We have made a decision in the next steps of Brianna's treatment now that her tumor has been classified as in progression (growing again). Brianna will be going once every two weeks for infusions of Avastin (Bevacizumab) and Irinotecan (CPT-11) that will be given to her through her port that she has had in since late October. Up until now the port has been utilized to draw blood for lab reports and occasionally administer pain meds like she had to have last week. There were no more spots available on the Avastin/CPT-11 trial open so we opted to go off study and hope that Insurance will cover this.

Now that we are not under the constant care of St. Jude and now are with Chicago Children's Memorial this will create a little more work with the insurance company in covering the drugs and such. St. Jude didn't ding the insurance quite as much as they could have and were absoutely on top of every step with me in working on the insurance stuff. Now that we are at Children's Memorial this is where the Medical fund that was established back in October will really come into play. The fund has paid for some of the doctor's vists and a couple of hosptializations back here in Chicago, as well as the supplements and other things relative to Brianna's medical care.

So now even more important are the fundraisers that we will be doing for Brianna's care.
The next one is this Sunday at Brianna's Grandma Pat's house. For $15 you can get a blue hair extension and the proceeds from that will go to The Brianna Sharp Medical Fund!
When: Sunday the 19th of April
Time: 1:00pm to 5:00pm
Where: Brianna's Grandma Pat's house906 Jaipur AvenueNaperville, Illinois
Cost for extension: $15
We will be having my sister in law, Ania there to take pictures of anyone who wants to have their picture taken with Brianna! It should be a great day and we invite everyone to come!\
And we are also doing another fundraiser at Danny's Pub on the 25th in Naperville! Here are the details of that one:
Date: Saturday, April 25, 2009
Time: 1:00pm - 4:00pm
Location: Danny's Pub and GrillStreet: 1550 N Rt 59
City/Town: Naperville, IL
Its $20 per person ($10 goes to Brianna's fund) which includes 2 drink tickets for soda,domestic draft or well drink and lunch - burger, chicken or deli sandwich with french fries, soup or salad.
We really appreciate the love and support that you all have shown throughout this journey. This has been a roller coaster for all of us and we certainly could not get through each day without all the support from our family and friends and everyone else that has been following her story.
Matt (Brianna's Dad)

Back to Children's Memorial - April 14

2009-04-16T09:31:00.000-07:00

Note from Mom Jennifer:

Tomorrow morning (later this morning) we have an appointment at Children's Memorial-Chicago and hope to learn more about any open trials they have for progressive DIPG. Since we were told the news last Thursday it has been a rough road as we try to regain focus on the next leg of our journey. I admit that I am dumbfounded watching Brianna as her appearance, energy, strength, etc. have much improved, yet we received news that no parent should ever have to hear and for the first time we were given a timeline that we will once again choose to ignore.
Matt can fill you in about the research but my focus is on taking care of Brianna on a daily basis. We have decided that Brianna will no longer attend school (she happily agreed) and will receive homebound instruction (hopefully from Mrs. Romano) as there is a possibility of experiencing a seizure. My goal now is to figure out how to keep her busy enough to not allow her time to worry about her tumor. She knows the tumor is growing and that we are going to try to find a new medicine. She is so glad she no longer has to endure the daily, liquid chemo medicine (we opted to call it crap) that she matter-of-factly states, "The tumor is growing, but at least I don't have to take the crap medicine anymore." Since she is older than most kids that were on the trial she was asked to describe or compare what the medicine tasted like and she said, "nail polish remover or dirty sink water." The doctor said the only other description of the taste was a boy who said, "poop" so I guess we gave the med the right nickname.

The kids enjoyed the holiday while the adults did their best to try to forget about the recent news. I continue to watch her and wonder how she could be so sick when she looks so good! The only thing we have noticed lately is that she seems to become easily fatigued. Another reason why I want to keep her busy, but not push too hard so that she experiences any other symptoms.

We had two things take place yesterday afternoon, the first of which I dreaded and the other I will speak about in a minute. We were told to begin to establish a relationship with a 'hospice' nurse so that Brianna would be comfortable. Though I had to listen and answer questions I don't think I got anything out of the conversation except that we are not considered 'hospice' rather 'pallative'. The difference is that we are still seeking or continuing radiation or chemotherapy treatments and this type of care allows a nurse to come to the home and for us to have access to immediate care at home rather than having to run Brianna to numerous appointments and ER visits. They also have social workers, chaplains, etc. available. We are not giving up the fight and though I am exhausted and drained in every way, I have a HUGE support network to continue to offer words of encouragement and hope. Thank you everyone for your wonderful, kind words and for the conversations, either in person, phone, email!!

The highlight of Monday afternoon was when I took the girls to meet Brianna's teacher at Color Me Mine. Ms. B wanted to treat them for their birthday gifts. Brianna chose a penguin, Kaitlyn a set of coasters, while I opted out...I have learned from experience that Kaitlyn will always ask for help finishing a project. This was a wonderful idea as WE HAD A BLAST sharing stories and getting a chance to take our minds off of her illness. Thank you Ms. B!!

We want to thank you for your continued prayers and support! I noticed that tons of people joined our carepage Monday night and I want to let them know that we appreciate their support...I was shocked watching the visitor total run up...it went on for a few hours!! It did my heart well to know so many people are checking on Brianna! God Bless!!

Love, Brianna's Mom Jennifer

A Very Difficult Update - April 10

2009-04-16T09:26:00.000-07:00

Update from Brianna's Dad Matt:

I am going to be brief with this update as much as I can....

Brianna and Jennifer arrived Tuesday and I arrived Wednesday and we had several appointments including a physical which Brianna passed with flying colors. Dr. Baker had even seen her in the hallway and commented on how great she looked!
That evening we went out to eat with our friends the Millers ( Scottie and Lori are the parents of Kole Miller). Brianna had a great time having fun with Kole and they even exchanged birthday gifts. It was a fun time to spend with them and Brianna had fun playing with Kole and it was a great evening! We had just heard about Kole's stable scan and we were so happy for Kole.
The next day Brianna had her labs drawn and went into sedation for the MRI around 9:45. I went back with her and she was quite happy and laughing! She was knocked out mid-sentence while talking to the nurses which was quite funny to see.
Jennifer and I were waiting for an eternity for the results and I finally got the results. It was not good news. Dr. Baker called and said that the primary (original tumor) had grown back to almost is orginal size when she was diagnosed back in October. Futhermore she had a few nodules that had formed on the ventricles and some brain tissue that they feel was the cause of her headaches. They originally felt that something else was the cause of her headaches because they didn't see any spread of the disease. That has obviously changed.

Needless to say Jennifer and I are speechless. This is not what we had expected at all. Some of the research I have done over the last couple months will have to be wrapped up over the next week or so and we will be trying to get an appointment with Chicago Children's Memorial Hospital to see what they can do closer to home.

Clinical trials open and close with great frequency. Sometimes there is nothing they can do when a child presents progression because trials open and close all the time. So we will continue the search to find the next treatment. In the meantime Brianna will have an in home nurse that will start coming to the house so she can start developing a relationship with an at home nurse.
Brianna is on a low dose of the steriod but that is to control any swelling and pain that she may be experiencing. She also has some meds to help with her pain if she has any more than the steriods can handle.
We will be exploring all options and we hope to have more answers after we meet with Chicago Children's Memorial hospital sometime this week.
Please keep Brianna and all the DIPG kids in your prayers including Caleb Spady and Andrew Smith and Max Lacewell. All three kids got similar news lately and we all pray for their situations to bring relief to their pain and find comfort.

Brianna is a great kid... one of the bravest I have ever seen. She has taught me alot from the first day she was born. She will continue to teach me.
Please visit three worthwile foundations to learn more about how you can help! ( www.justonemoreday.org) ( wwww.icouldbeyourchild.org) and ( www.thecurestartsnow.org) I know the organizers of all these organizations and I sit on the board of Just One More Day. All of these incredible people that run these foundations are dedicated and caring people that have been affected by this horrible disease. Please visit their websites to learn more about how you can help.
Also please continue to go to www.curebrianna.com to learn more about how you can help Brianna personally. This is going to be new territory for us and all the support and love you can give is much appreciated!
Thanks for checking in.... I know you all have been anxious to hear and thats is why I wanted to take time to do this update.
We can't thank you all enough....
We love you all.
With Hope,

Matt, Jennifer and Brianna

Another Great Weekend - April 5

2009-04-16T09:16:00.000-07:00

Hi everybody,
This weekend Dad picked me up early on Friday so I could go over to my Aunt Jacke and Uncle Dave's house to spend time with them and my cousins Lauren and JJ! When he came back to get me I was in a really good mood cause we had a great time! Then we went to downtown to se Grandma and Grandpa Sharp and Aunt Faith at the John G. Shedd Aquarium. I loved every minute of it! We saw lots of exhibits! After that we went to Grandma and Grandpa's hotel and Kaitlyn and Gianna and me painted Aunt Faith's hair with hair mascara! It's supposed to wash out but Dad told me that Grandpa called him later and said Aunt Faith washed her hair but it didn't come out. Sorry Aunt Faith!!! We all went to eat at South Water Kitchen right next to the hotel and they fixed some organic food that I can have and I had a really good time. It was a great day and we'll remember it for a long time for sure! Today is Sunday and we got to color Easter eggs. We're going to Grandma and Grandpa Spinello's for a late birthday party cause me and Kaitlyn and Madison all had birthdays so we get to celebrate together! I felt good all weekend and that is great.
Love,
Bree

Note from Parent (Dad Matt):

Before I get into this weekend I do want to extend a big thank you to Seana Somolik,and everyone that came out to Palace Billards on a night that was predicted to get alot of snow but it didn't come until the next day! We raised a little over $3000 for The Brianna Sharp Medical Fund and everyone had a great time. Also a big thank you to Bill (owner of Palace Billards) and Detroit Danny who played some great music while everyone had a great time! Thanks to all for making it a success despite the weather.

This is good especially since we are heading into this week at St. Jude for follow up appointments including a 2 hour MRI Thursday morning! Please keep Brianna in your thoughts on Thursday and we are praying for good news.

Just a reminder that this week ( Monday thru Wednesday) is Jewel Shop n Share and the Shop n Share forms are posted on the GET INVOLVED part of the www.curebrianna.com website. 5% of all sales where people present the Shop N Share coupon at checkout will go to The Brianna Sharp Medical Fund.

Thanks to all for your birthday emails to Brianna! She went through them last night and recieved alot! And yes Aunt Michele that e-card was cute... she even saved to keep looking at over and over LOL

Please keep all the DIPG kids in your prayers, including Max, Kole, Caleb, Andrew, Alexis and all the other kids facing this battle on a daily basis. They need your thoughts and prayers every day.

Thanks for checking in and have a great day!
Matt (Brianna's Dad)

Jewel Shop - April 2

2009-04-16T09:14:00.000-07:00

From Brianna's Parents:

Reminder that the Jewel Shop & Share fundraiser is next week, (April 6, 7 & 8) We emailed the slips to as many people as possible, but if it did not reach you please visit www.curebrianna.com and click on "Get Involved" and go to the Jewel Shop & Share link. You should be able to print a copy of the slips. You must have the slip with you as the stores will not be able to donate without the documentation. Please, feel free to distribute to as many people as possible.
Jewel food stores will donate a portion of your grocery bill to the Brianna Sharp Medical Fund. We had great success Super Bowl week and hope that Easter/Spring break will prove to be just as successful.
Thank you for your continued support!! If you would like to contact us or if you have any questions, please see the information below.

Jennifer Siemann(Brianna's Mom) jensiemann@sbcglobal.net
Matthew Sharp (Brianna's Dad) msharp@broadvox.com

My 13th Birthday Tomorrow! - March 31

2009-04-16T09:05:00.000-07:00

Exactly 13 years ago tomorrow I was born! Tomorrow is my birthday but I got to celebrate a week early! Mom treated me to a salon day and Kaitlyn and Haley came with us. Karin and Megan at the spa treated Mom and Kaitlyn and Haley too. It was fun! After the spa we went to Gino's East pizza and my friends from school and all Mom's family were there! For a minute I didn't get what was happening and then all of a sudden I realized it was a surprise party!!! I couldn't even talk! Gino made my special pizza and Mom made a chocolate cake that was on my special diet and I even got to have Steaz soda so I didn't miss out on anything! I got to get my hair done and makeup and some cool new shades. Mom said I looked like I was 16. COOL! If you want to send me a message, I have my own email address too. It is bls.2009@att.net. It would be fun to get messages from all the people who are praying for me to get well.
Thanks to everybody.
Love,
Bree

Note from Parents (Mom Jennifer):

Exactly 13 years ago I called the OB doctor and he told me to go to the hospital to get checked (it was a Sunday night) I left for the hospital thinking they would send me right back home...I wasn't due for another month (April 28th). I was shocked when the nurse said, "Well, you won't be leaving here without a baby!" I thought she was nuts!!! I could not believe we spent the entire day shopping for a cell phone so I could call Matt when I was in labor!!!Brianna was born on April 1st (April Fool's Day) and since she couldn't wait another 4 weeks and the fact that it was April Fool's Day, no one believed that I was at the hospital, in labor...including the store manager at Menards (I was in charge of payroll) because I called in sick saying I was in labor and someone needed to send payroll to the general office. I think he finally realized it wasn't a joke mid-afternoon and they decided to scramble to get someone to finish payroll.I remember calling family and friends telling them, "I'm at the hospital in labor...and this is no joke!!" While I was at the hospital my entire family had to scramble to finish the nursery which had the carpeting ripped out and still needed to be painted. By the time we came home all was ready including the new crib and dresser. The entire labor, delivery, etc. was complete chaos but well worth the wait. Born 1 month early, Brianna Leigh still weighed in at 7 pounds, 3 ounces. Thank goodness she didn't wait!! We will post the pictures from her birthday soon so don't forget to check the photo gallery next time.Thank you for all of your continued prayers and support. Thank you to everyone that helped with the party (Bob, Jackie, Grandma, Aunt Pat, Great Grandma, Karin, Megan, Leanne, etc.) I am sorry if I left someone out...please know we are so grateful for all that you do to support us daily! Goc Bless!If you would like to wish Brianna happy birthday, her email address is bls.2009@att.net. She doesn't receive many emails so she will be shocked when she sees the number of emails in her "inbox"

Love to all,
Brianna's Family

Reminder of Tonight's Fundraiser - March 28

2009-04-16T08:57:00.000-07:00

Note from Brianna's Dad, Matt

I just wanted to remind those of you in the Chicago area of the fundraiser that is being held tonight at 6:00 for Brianna in Villa Park.

Here are all the details!

Start Time: Saturday, March 28, 2009 at 6:00pm
End Time: Sunday, March 29, 2009 at 12:00am
Location: Palace Sports Bar and BilliardsStreet: 160 West Roosevelt Road
City/Town: Villa Park, IL

Come on out to Palace Billiards and help out Brianna Sharp who has been diagnosed with a Pediatric Brain Tumor. There will be a silent auction and raffles. A $35 ticket includes a dinner from 7-8 pm, free pool all night (starting at 6pm), two drink tickets and Live Music with Detroit Danny! All proceeds from ticket, auction and raffles will go to the Brianna Sharp Medical Fund to help pay for medications, nutritional supplements and medical bills!
We are excited to see many of you that will be coming out tonight to support Brianna in her fight against DIPG.
Thanks to all for your love and support!
Gratefully,
Matt (Brianna's Dad)

Promoting Our Greater Cause - March 27

2009-04-16T08:51:00.000-07:00

This blog is from my parents. It's got a lot of medical stuff in it and you all know I don't like to talk about it much. I just want to get well. So today is mostly for parents.
Love, Bree

From Brianna's Parents:

The websites and Youtube clip inclkuded in this update may not be for everyone. The websites include links to DIPG warriors' websites, as well as other ways you can help promote our cause. The sites and the Good Morning America clip also honor DIPG angels.

We previously asked everyone for help in assisting us by contacting your U.S. Representatives and Senators in order to push for current legislation that would help pediatric brain tumor patients. Though there are many different types of pediatric brain tumors, Brianna and all of the DIPG warriors have a tough road because their tumor accounts for only about 5%-10% of all pediatric brain tumors. (150-200 children are diagnosed annually in the U.S.)
The percent of money spent on pediatric cancer research is lacking in comparison to other types of cancer. With DIPG, we have an extremely small community and we can only get our voices heard if we can count on people like you helping us in our efforts to promote awareness. Whether it is for pediatric cancer in general, more specifically pediatric brain tumors, or even more specifically Diffuse Intrinsic Pontine Glioma, the families and friends directly related to the brave DIPG warriors would be forever grateful for your support and contributions to promote awareness and research that will hopefully lead to a cure.
We have many friends fighting the same battle as Brianna and we include them on our updates and pray for them daily as the DIPG parents have developed a support system and at the same time are working on promoting our cause.
For Brianna, Max, Kole, Liam, Caleb, Carter, Derrick, Keleigh, Skylar, and many more warriors we thank you for your continued support and prayers!
We are including those organization website addresses and hope that you will visit to learn more about how you can help. We also included a video clip from Good Morning America, which tells a story about a little girl who made a difference and her parents are working hard to promote awareness for pediatric cancer.
You will have to cut and paste into your browser in order to view!!
www.justonemoreday.org
www.icouldbeyourchild.org
www.thecurestartsnow.org/gma (Good Morning America clip)
God Bless You! Thank you to everyone who prays for and holds a special place in their heart for our DIPG warriors and angels!!!

Brianna's Family

Candles - March 25

2009-03-25T14:00:00.001-07:00

Update from Brianna's Mom Jennifer:

So....I just spent almost the last hour working on today's update and then lost it!!! This has happened on two other occassions and it upsets me so much that I put the time in and begin editting only to lose all of it...then I can't bring myself to re-write the update until later!!
I will at least cover what the title is for and ask that you visit www.gratefulness.org and click on "GROUP" Enter the initials "BLS" for the group name and follow the directions to light a candle for Brianna. We woud like everyone to do this in order to allow Brianna to have a visual allowing her to see how many people are praying for her. Please light a candle and forward it on to everyone you know so Brianna can see the overwhelming support she has on this difficult journey!!
"Be still in the presence of the Lord, and wait patiently for him to act." Psalm 37:7
"Patience is having faith in God's timing"...something I must always repeat to myself when I feel frustrated having to watch Brianna endure such a difficult journey!!
Something to show all of you the type of person Brianna is and to use as an example of how she always cares about others first is our experience this past Sunday evening.
Brianna experienced another excrutiating migraine headache, which for us is hard to deal with as the symptoms/effects are the same as those caused by the tumor. Crying/screaming in pain, nausea, vomiting, dizziness, etc. Though we want to run to the ER we know that recently it was determined that her tumor is stable, and maybe even looks better than a previous MRI. Brianna swore that Sunday evening she had, "the worst headache of her entire life!" She has always been dramatic but after last Sept/Oct. how do you know for sure when she needs medical attention and when she needs to get through it on her own??
Well, Bob and I were trying to help her best we could giving her medicine, icepacks, holding her, praying for her, and trying to get her to relax and breathe...it took almost 2 hours for her to finally settle down!! In the middle of all of the crying and yelling, etc. Brianna must have seen that I was upset and apologized to me. I asked her why she was saying she was "so sorry" and she said, "I'm sorry you have to deal with this and see me go through all of this." As my heart was breaking I grabbed her and told her to never worry about anything except getting better! I want her to focus on fighting he tumor and not about making sure we are all o.k. I want Brianna to be selfish and put herself #1 so that all of her energy can be used to fight this battle.
That is probably the best example to show you Brianna's caring, loving nature and why she is truly a special child!!
Thank you for your continued love and support! God Bless!!

After the Wedding - March 21

2009-03-25T13:54:00.000-07:00

Hi everybody. Well, we're back from Aunt Julie's wedding and there is so much to tell that it would take me forever to write it all. My dad has some stuff to write about and I'm kind of tired.
Bree

Note from Brianna's Dad Matt:

Well we arrived back from Peoria after Brianna, Kaitlyn, Gianna and I had gone to their Aunt Julie's wedding! We left Thursday after Jennifer had picked up Brianna and Kaitlyn from school and we headed out around 1:00 Thursday for the 2 hour drive to see their Grandpa and Grandma Sue and their Aunt Faith and Aunt Julie and meet their new Uncle Josh!
We had the rehearsal dinner Thursday night and Brianna and Kaitlyn were originally placed in the role of handing out programs but were quickly recruited to help their little sister Gianna down the aisle to be flower girl as we saw that Gianna would be most comfortable with them helping her. Gianna really looks up to all of her siblings but is always excited when its a day where she gets to see them.
We went to Alexander's Steakhouse where Brianna got to visit some more with her Grandpa and Grandma Sue and was her usually laughing and smiling self! Her energy level was pretty good that night until we got back to Grandpa and Grandma's house and then she was ready to take her meds and crash for the night! That first night was rough because Gianna woke up in the middle of the night but Brianna was a great big sister and was helping to get her to calm down and did a great job.
Friday we woke up and had breakfast and as her Aunts got ready for the wedding Brianna just chilled out and played with my iTouch and talked to everyone at the house. Soon it was time to get ready and both Brianna and Kaitlyn looked so nice in their dresses for the wedding! We left around 3:00 to head over to the wedding. All 3 girls fulfilled their roles perfectly and did a wonderful job.
When it was time for the wedding reception Brianna was starting to get really tired but hung in their long enough to make it through the wedding party introductions and the toast and eat a little something before she crashed for a while in Aunt Faith's room. But not before she got to meet many of Grandma Sue's friends and co-workers that have become quite big fans of Brianna and finally got a chance to meet her in person! It's always nice to meet those who have given their love and support to Brianna from day one and we appreciate all of you that tune in every time you get one of these alerts of an update! Your notes and words of encouragement not only help Brianna with her battle but also lifts our spirits as Brianna's parents and step parents to know that Brianna is in your thoughts as well.
Brianna slept in Aunt Faith's hotel room for about 1 1/2 hours before I got her up and back to the reception with enough time to say good night to everyone including many of my aunts and uncles and some of the family members of my new brother-in-law Josh, that came to the wedding who have given their love and support to Brianna from the start of theis journey. I think it was good for Brianna to come, not just to see her Aunt get married but also to see those people that love and support her every day even though she may not see it for her own eyes.
We headed back Saturday around 1pm and I dropped Brianna and Kaitlyn off and Jennifer's house as Kaitlyn does have a volleyball tournament tomorrow and Brianna could use the rest in her own bed. I did get a chance to talk to her earlier tonight and she didn't feel so great and did throw up so hopefully this is just a flu bug that has been going around!

I also wanted to remind those of you in the Chicago area of a fundraiser that we are holding next Saturday in Villa Park! Here are the details:
Start Time: Saturday, March 28, 2009 at 6:00pmEnd Time: Sunday, March 29, 2009 at 12:00amLocation: Palace Sports Bar and BilliardsStreet: 160 West Roosevelt RoadCity/Town: Villa Park, IL

There will be a silent auction and raffles. A $35 ticket includes a dinner from 7-8 pm, free pool all night (starting at 4pm), two drink tickets and Live Music with Detroit Danny! All proceeds from ticket, auction and raffles will go to the Brianna Sharp Medical Fund.
Hopefully anyone and everyone that can make it will come! It should be a great event! We are specifically trying to raise the $6000 needed to get a low level laser therapy machine so that Brianna can benefit from those treatments as well! Any money raised over and above that will go into the fund to help cover her medical bills, medications and supplements that she takes daily!
Thanks for checking in and thank you again for all your thoughts and prayers! Please also pray for Max, Andrew, Caleb, Carter, Kole and all the other children and their families that are fighting the very same battle Brianna is!
Grateful Dad,
Matthew

An Irish Prayer - March 20

2009-03-25T13:45:00.000-07:00

I had to spend most of last week in the hospital. It was a bummer! But I feel so much better now! I got to spend a lot of time this week with my friends and family. Mom picked Kaitlyn and me up from school early to go to Peoria for my Aunt Julie's wedding. Mom got to school right at lunch time so she waited while I talked to my friends before we left. All my friends have been cheering me on while I have been sick.
Thank you everybody!
love,
Bree

Note from Mom:

I was able to spend the lunch hour time talking to Ms. Beauregard. She has Brianna in class three times each day and we are blessed to have her and the 7-1 team supporting Brianna this entire year. For the first few weeks of the school year, Brianna was participating in cross country while experiencing mild-moderate headaches. It was during this time, when we were searching for a cause of the headaches, that I sought help from Brianna's teachers. By the end of September Brianna's headaches became so severe that we knew something was wrong and needed to find an answer. Since her diagnosis this past October, Ms. Beauregard has assured me that Brianna's teachers, friends, and classmates, "hold her near and dear to their hearts." They are all part of Brianna's Brigade and have held different fundraisers to support Brianna on this difficult journey.
Brianna's smile and laugh have returned and she is back to telling us long stories that have no point or no ending...you finally have to ask her, "o.k., what is the moral of the story," or "get to the point." Most of the time she admits that there is no point!! :-) I now realize that she is happy and feeling well when she gets in the story-telling mood. Her stories may not have a point, but they do have a purpose which is to try to make you laugh or smile!!
We will have a very hectic schedule the next two weeks as Kaitlyn turns 11 on March 24th, and Brianna turns 13 on April 1st!! We have always celebrated their birthdays together, but this year we decided to celebrate their birthdays separately to allow them each a chance to be the center of attention.
We again thank you for your prayers and continued support. I included a prayer below as we once again celebrated our Irish heritage with a wonderful St. Patrick's Day party.
AN IRISH PRAYER
May God give you...For every storm, a rainbow,For every tear, a smile,For every care, a promise,And a blessing in each trial.For every problem life sends,A faithful friend to share,For every sigh, a sweet song,And an answer for each prayer.
God Bless!!

Back Home and St. Baldrick's - March 16

2009-03-24T12:09:00.000-07:00

Hi everybody. I got to come home from the hospital on Friday and I am feeling a lot better.
All the doctors said that my bad headache is just a migraine! That's a relief! So now I am just getting excited cause my Aunt Julie is getting married! In a few weeks I have to go back to St. Jude but all I can say is just tell me what to do and I'll do it. I don't really like to talk about all the medical stuff. Just fix it, that's all! St. Baldrick's was great and Uncle Dave and some other people even shaved their heads in my honor! Wow! Uncle Dave let me take the first swipe of cutting his hair off. It was fun! Maybe we can even do it again next year. I hope so.
Love,
Bree

Note from Parents (Mom Jennifer):
Wow!!! I love roller coasters, but not the one we have been riding since October!! Doctors from St.Jude, Central DuPage Hospital, Edward Hospital, primary doctors and specialists all worked together and all concurred that the tumor was not causing the headaches. What a strange experience to have everyone "jumping for joy" that Brianna is a migraine sufferer! We were dreading that particular diagnosis back in October after the CT scan showed no tumor. Her headaches continued so the next weekend we thought for sure she must be suffering horrible migraines or serious tension headaches...a tumor was not at all what we were expecting. So, we began a very scary, unpredictable and uncertain journey.We are glad to have Brianna back home and pray that she has a great week! As we still have a few weeks until our return trip to St. Jude, we will continue to pray that the "area of concern" following the February MRI, is in fact a cyst or a sign of necrosis (dying of cancer cells)Brianna has told us from the very beginning to, "Just tell me what I gotta do and I'll do it!" She doesn't want to know any details and never asks for results of tests. They even used that quote for the headline of the St. Baldrick's event where Brianna was an honoree! However, Matt and I decided to share this information with Brianna as it would without a doubt lift her spirits to know that it isn't the tumor causing the pain!! I do believe she felt instant relief and her spirit returned almost instantly!St. Baldrick's was an amazing experience!! We were not sure what to expect so we were all blown away by the wonderful people and the amount of support they put forth for pediatric cancer. At the beginning of the event we listened to a few speeches. A 14 year old survivor of a very rare form of leukemia, a 23 year old who described what it was like to lose his younger brother to testicular cancer, and a parent of a little girl who is now cancer free. I must admit during this time I wasn't sure I would make it through the event, but the inspiration I received from those people meant too much. It is our goal to have Brianna give her survivor speech one day.Uncle Dave and Uncle Jeff volunteered from our family to shave their heads in honor of Brianna. You can see the pictures I added to the gallery! Brianna had such a wonderful time that she sent me a text message asking if we could do this again next year!!We would like to thank you for your continued support and prayers as we gain such great strength from our greatly expanded community!! Whether it is through your donations, kind words, prayers, cards, etc. We feel blessed to have such support. Brianna, Max, Kole, Liam, Carter, and all the DIPG warriors are true inspiration to all of us and they remind us to not take anything for granted! We parents have the honor of raising these children sent by God! They are God's children first and he has a plan for each of them. We may not know what the future holds and we pray for our will to be one with God, we know that they have already made a difference in the lives of people far beyond what most people may accomplish in a lifetime! They have already demonstrated strength, courage, determination, and love far beyond what many people can comprehend!
God Bless!!

Brianna's Family

March 12

2009-03-24T12:04:00.000-07:00

Note from Brianna's father Matt:

Hello everyone!
I wanted to send a note out to all of you to give you a little update on the latest with Brianna. Some of you may know that Brianna was experiencing some severe pain and we took her to the hospital. Let me give you a timeline of what occurred.
Monday morning I recieved a call from Bob letting me know that Jen was going to be taking Brianna to the ER at CDH. I got dressed and grabbed all the medical records and the previous MRI scans and headed over to CDH to get her pre-registered in the ER and Jen and Bree showed up shortly after I arrived. The scary part of these pains was that Brianna had said that the pains were nearly as bad as the pains she originally had back in October when she was diagnosed and of course we were concerned that this tumor had gone into a progression stage.
Brianna was given pain meds to help with her pain and was taken in for an MRI about 10:30 Monday morning and by 2 o'clock they had looked at the scan and told us that the tumor is still stable (they were comparing to the previous MRI we did at St. Jude on February 4th). Jennifer and I were very relieved to hear this and we were still trying to figure out where the pains were coming from! Brianna was discharged a little later on and that was the end of that day.
Fast forward to Tuesday evening. I took Gianna with me to watch Kaitlyn's band concert and Brianna was there with Jennifer as well. After the concert I began to drive home and got a call from Jen about 5 minutes later that Brianna was in excruciating pain again and that she was going to take her to Edward ER. I made a bee line for Edward and Maria had to come to Naperville to get Gianna. When we arrived Brianna was in A LOT of pain and I think that shocked Gianna to see Bree in a lot of pain and felt bad for her and even drew Bree a picture to
"make her happy again" as Gianna told me. They gave Bree some morphine for the pain and I contacted Dr. Baker at St. Jude to let him know what was going on. They had recieved my FED EX earlier in the day with Brianna's scan from Monday.
St. Jude wasn't able to view the scan until yesterday morning so we had Brianna admitted for pain management until we could hear from St. Jude about possible reasons for this pain. Jennifer spent the night on those very uncomfortable "beds" for the parents and that did a number on her back and was in pain herself.
Dr. Baker called me Wednesday morning with news that he felt that visually the tumor had shrunk and that he felt that Brianna was otherwise doing really well and that we had to find a reason for the headaches and did hint that it may be due to the cyst-like formation on the edge of the tumor (which we knew about in February). We also know that sometimes fluid leaks in a tumor cyst can be very painful. However we wouldn't be able to definitively know that is the cause until we get the next St. Jude scan on April 8th.
Then I recieved the MRI report and it actually appeared that the tumor had grown a little bit but after talking to the doctors they also reminded us that with her scans at St. Jude she is sedated and immobile. She was awake for this scan last monday so if she moved in the slightest that makes the scan a little tougher to read.
She shows no other neurological symptoms and that is a good thing. At diagnosis she did have some double vision/ blurry vision and some balance issues. She doesn't present those symptoms currently so we are grateful for that.
It appears that Brianna will probably be staying one more evening and possibly get discharged Friday. I know many if you were tuning in to hear about the St. Baldrick's event from last weekend but I am going to let Jennifer update that this weekend for you. I must say though it was a great event and Brianna had a great time!
Thanks to our spouses for handling things on the homefront! We couldn't do it without you!
As you continue to pray for Brianna please also keep Max, Kole, Andrew, Caleb and all the kids fighting this monster in your thoughts and prayers!
We can't thank you all enough!
Matt

The Luck of the Irish - March 4

2009-03-24T12:00:00.000-07:00

I am so excited! I fit into my jeans again!! I am so excited that my body is finally going back to normal after all the swelling from the medicine! I am so happy! And that's all for now!
Love,
Bree

Note from parents:
The swelling going away has made a huge difference in Brianna's attitude as she is so joyful every day she comes home from school! Her Irish eyes are smiling!!This month we have the luck of the Irish with us as we start off this month with the St. Baldrick's Event this Saturday, March 7. Part of the entertainment for the event will be the McNulty Irish Dancers. Brianna and Kaitlyn, along with their cousins (and believe it or not...myself...about 25 years ago when Barbara McNulty was in her very early years of teaching) were all part of the McNulty Irish Dancers. We look forward to the event so we can see Barbara McNulty after missing her for several years.Even though it has been several years since any of us have danced for McNulty, Barbara holds a special place in her heart for everyone whom she meets and teaches. She has been very generous and supportive of Brianna on this journey. Barbara McNulty returned from Ireland recently and brought back holy water from St. Bart's well. It turns out that he is the patron saint of neurological diseases! This along with the blessed St. Peregrine oil (patron saint of cancer) will be used during our daily prayers for Brianna's healing.I received a phone call from Colleen Willard (the lady we went to see in Northlake at St. John's) who was miraculously healed from an inoperable brain tumor. She lays her hands on people for healing and immediately felt a connection with Brianna. In the course of our conversation she told me about the story of a 12 year old girl whose family was mourning her death and Jesus healed her! (written in Mark) It is amazing to me that the previous night I chose to read Mark in the Bible as opposed to going through my prayer book and various prayer cards. As soon as I read that story I felt a sense of peace and fell asleep.Brianna's Aunt Georgia received an unsolicited email from Mother Nadine from the Intercessors of the Lamb in Omaha, Nebraska. The visions that were shared were very hopeful and also helped bring a little more peace. Aunt Georgia, Brianna and I will be attending a weekend retreat in April where we will see Colleen and Mother Nadine. We have a prayer network that reaches around the world!! Thank you for your continued prayers and support!My family (along with her dad Matt's family) are very Irish and Catholic and we pray that the month of March (St. Baldrick's, St. Patrick's Day, and all of the other celebrations this month) will prove that we are blessed and will be witness to a miracle healing! May the luck of the Irish and the grace of God be with us always!! We will continue to pray to St. Peregrine, St. Bart, St. Jude, St. Anthony, St. Michael, the Blessed Mother and all the angels and saints for their intercession on behalf of Brianna's healing.Brianna's 13th Birthday will be coming up on April Fool's Day!! Please pray for Brianna to receive the greatest gift of all, which is the gift of a healthy, happy life! I pray that April 1st will prove to be the rebirth of Brianna as a healthy child. We return to St. Jude April 7th-10th for more testing and another MRI. As we return on Good Friday, may we return with new life (health) with God's will, as we celebrate the Easter holiday and it's true meaning.We will also continue praying for all of our DIPG children, most recently we found out about another little boy (Carter Kettner) from Huntley, IL. He is also on www.carepages.com and you can visit his site if you are interested in sending your wishes and/or prayers. Please pray for their family as they begin the path which we started back in October.

Love,
Brianna's Mom Jennifer and family

St. Baldrick's Event - February 28

2009-03-03T12:19:00.000-08:00

Note from Brianna's Dad:

Hello everyone! We wanted to post an update on an event that is going to have Brianna as an honored guest. We are excited for the event and hope that it raises alot of money for Pediatric cancer research!
To learn more about St. Baldrick's please visit:
http://www.stbaldricks.org/about_us/#
If you are interested in attending, volunteering, participating, or donating please click on the link ( or you may have to cut and paste the link) below and make sure it is specifically for the Naperville Department of Public Safety.The event is held Saturday, March 7thNaperville Holiday Inn (off Naperville Road prior to I-88)5-10 pm (registration begins at 5 pm)casual dress codecash barfoodentertainment (head shaving, Irish Dancers and more)silent auction and moreWe would love to see you there.....expecially if you are planning on shaving your head.
http://www.stbaldricks.org/events/event_info.php?EventKey=2009-21
Brianna is doing well and went to a birthday party last night. I haven't had a chance to talk with her today since she went to the party but I know that was very excited to be going and I am sure she had a great time!
We appreciate everyone's thoughts and prayers for Brianna as she continues her courageous fight against cancer. We are touched by everyone's concern and generosity and can't begin to thank everyone enough! Please keep in your thoughts and prayers Max, Kole, Lizzie, Andrew, Luke and All the DIPG kids fighting this battle just as courageously as Brianna is!
I leave you with a quite that I heard from an old high school friend of Jennifer and I that I thought was quote appropriate.
'The will of God will never take you where the Grace of God will not protect you'
Thank you for checking in on Brianna !

Matt - Bree's Dad

A Little Bit Longer - February 22

2009-03-03T12:17:00.000-08:00

Note from Brianna's parents:

Before I post tonight's update I would like to remind everyone that a second order for Brianna's Brigade t-shirts will be submitted the first week of March so if you are interested in purchasing and do not have an order form, please feel free to email me at (jensiemann@sbcglobal.net). I hope to receive all orders by March 1 for the second printing. Everyone who received thier shirts from the first round of orders were very pleased and we would like to thank our neighbor Chris Reihs for his help in this fundraiser!!Brianna's new theme song is "A Little Bit Longer," by the Jonas Brothers. If you listen to the lyrics you'll know why! The song was written after one of them (Joe, Nick, what's his name) was diagnosed with diabetes. Brianna, Haley, and Kaitlyn all like the Jonas Brothers and Brianna will play this song over and over singing along.Brianna and Kaitlyn had their weekend at their dad's house but it was cut short by Friday evening volleyball practice for Kaitlyn and then her first volleyball tournament of the year which lasted all of Sunday morning. Brianna shows little support for Kaitlyn's volleyball as she reminds me a million times how bored she is...and now with her illness we will definitely not leave her home alone so she have to find something to keep her entertained. No need to recommmend books as she will have no part of that!!An update on Gizmo...he has learned that our home has an upstairs!! Bob and I were both upstairs when we heard him enter our bedroom and watched him jump around wagging his tail with excitement! I went to bed and Bob went downstairs with Gizmo to watch t.v. However, Gizmo proceeded to sneak upstairs 3 more times and was sitting outside our bedroom door. Bob then decided to put Gizmo to bed in his crate only to listen to his whimpering. Bob decided to let Gizmo come upstairs to say goodnight to me shaking his head reminding me how much he "dislikes" dogs. Bob purchased two gates today to keep Gizmo contained to the family room, though when I went to tuck the girls into bed Gizmo barked incessantly and tried to find someway to squeeze through the gate.I would like to put on record (Bob will still deny) that Bob is just jealous of the fact that Gizmo doesn't give him any attention when anyone else is around and his late night t.v. buddy is no longer.Matt went to visit the Burzynski Clinic in Houston this week in order to see what they have to offer for recurrent DIPG tumors. We certainly pray for Brianna's continued healing and believe we will not need to seek other treatment options, but Matt convinced me it is better to be armed with knowledge and prepare for immediate action if it is ever needed. This is very difficult as it forces us to think about tumor progression when we would rather focus on her current treatment being successful along with prayer and God's healing power. In fact, I have not yet been able to hear about Matt's trip as I am not quite prepared for the discussion, but when we are ready we will let you know what we learned.Finally, as we continue to ask for your prayers for Brianna and all of the children battling cancer, especially our DIPG warriors who inspire us everyday with their courage and spirit!God Bless You!
Jennifer

He Can and He Will - February 19

2009-03-03T12:02:00.000-08:00

We did have a good time at the GIG. We have pictures to prove it but some of it was still boring. I just figured out how to talk to myself on the phone - I guess I was bored. I called my cell phone from the house phone and answered my cell phone - so I'm really talking to ME. It's cool!
On Monday I woke up with headache and a sore throat. I had a headache when I went to bed too, so Mom called the doctor and they found out I have strep throat. I missed a couple of days of school and then when I knew I was going back I got all worried because I missed so much it would be hard to catch up. Last night I took Gizmo outside and slipped on some ice and hit my forehead. It ended up just being a bump over my eyebrow. This year is really hard. It sucks. I am worried that I won't pass the ISAT tests and then I won't pass 7th grade. I missed a lot of school being sick and it scares me that I might not pass, even though my mom is a teacher, I still want to pass the tests and I am afraid I won't. Well, I'll just have to try.
Love,
Bree

Note from parents (mom Jennifer):
I think teenagers are predisposed to answer boring to whatever question is asked...until you get the answer o.k. which is code for great, then if they answer cool it is code for something fun but mischievous, and if they answer awesome it was probably something illegal! I was going to return to work Monday but was awakened by Brianna at 4 am complaining of a headache and sore throat. Normal sick complaints for most parents, but before Brianna was diagnosed she would wake up in the middle of the night or early morning in pain with a severe headache and nausea. Kaitlyn then woke up not feeling well so I decided to call the doctor asap and we were able to get in right away. Kaitlyn was negative for strep but treated preventatively. When Brianna fell on the ice we were worried because she hit her head. Of course, this also puts us in a panic as she needs to prevent any head injury that might cause a hemorrage. Bob and I realized it was a bump over her eyebrow and she would be o.k. Once Brianna gets going all the world is wrong and her worries and concerns that she keeps bottled up start to come out. Brianna doesn't like school, but that is only because in her words and mine, "This year sucks!!" It doesn't matter that I'm not only her mother but also a teacher, she doesn't believe me when I try to explain things to her. She needs to hear it from her teachers/school. I am just "mom" and realize that I fall into that pre-teen to teen attitude of "you don't know anything."I have had my own struggles to deal with and am doing my best to get back to work. I am having to deal with depression/anxiety issues, but I also am suffering from pain that I have experienced off and on for many years. I will go for medical testing likely showing that nothing is wrong, but I hope to find relief soon so I can return to work.We are still committed to our faith and I even purchased a wall hanging that will remind me of what I have been saying for months but have recently been struggling with..."Faith, is not believing that God can, but knowing that He will!" I have been on this journey swaying back and forth between, "I know He can heal her, but my struggle is between hoping He will and knowing He will heal Brianna." I seem to be stuck on the Hope side and I am struggling with that so I am working hard to pray that my will is one with God's no matter what His will holds for Brianna. Though my family is holding strong and continuing to grwo spiritually, I am working extra hard to keep pace right now.Thank you for your support and continued prayers. Please continue to pray for Brianna, Max, Kole and Liam. They have more strength and courage than you can even imagine. I am amazed as well as everyone who has seen Brianna over the last couple of weeks...she is so happy, energtic, excited and her sweet smile is back!!!! Her teachers miss her whenever she is gone and I think that is because they miss her smile!!
Jennifer

Dancing the Night Away! February 15

2009-03-03T11:53:00.000-08:00

We went to Gregory's Dance, it was nicknamed the GIG. I thought it would be boring but Haley and my best friend Maddy went with me so it was pretty fun. Haley and I had disposable cameras so we'll see how the pictures turn out when they get developed. Then we will know for SURE if we had fun!

Last night Haley prayed the rosary with us. I think that my stepdad will pray with us tonight. It's a really special way to pray and we say extra prayers to St. Jude and St. Preegrine, antonietta Meo, St. Francis and some others too. A few people still come by to visit and they all tell me I look really good! I am almost back to normal after all that medicine made me look kind of puffy. I'm getting excited because I am going to be a real teenager on April Fool's Day. Sometimes it's hard to get people to believe that is really my birthday but it is. I was born on April 1st!
Love, Bree

Note from Parents (mom Jennifer):
Dancing the night away!? Well....not really! Brianna still thinks the GIG (Gregory's Dance) was boring, but I think she said that rather than admit she was wrong. I purchased a disposable camera for Haley and Brianna. Considering they each used up 27 exposures tells me they were not "totally bored"!! Once the film gets developed we will be able to see how much fun they had...or how bored they were!
Eric will be at a friends house so he will have to join us in praying the rosary another time. It warms my heart when the girls each take turns reading one of the mysteries. We have only introduced the rosary recently (as far as teaching them exactly how to pray the rosary) and we plan to make a habit out of it. Prayers for the seriously ill, prayer of gratitude, for healing, for deepening faith, etc. When I see their faces and how intent they are while praying the rosary and the determination to get through all of the prayers, it helps me grow in my faith because I see how deeply they believe and how they do not question anything. I am learning from them as we pray the rosary.
A few people have stopped by or seen Brianna out and about and they are all absolutely amazed at how good she looks!! They are almost speechless as she is smiling, laughing, energetic, and physically she looks like she did previously. I believe I mentioned a long time ago that she gained 30 pounds and she has lost all but 5 pounds!!! Which if you think about a 12 year old growing...that is just normal growth.

Brianna was born 1 month premature weighing in at 7lb/3oz. A very healthy, happy, normal baby. Being born 1 month early she was really good size and had no complications. Imagine trying to tell people we were in labor on April Fool's Day!! No one believed us when we tried to call and tell people I was in labor. She was born at 5:15 at night. With her 13th birthday approaching I am brainstorming a very special "teenager" party where she can be pampered. Especially, with all that she has had to endure she deserves a ery special day to be treated like a princess. I am using her approaching birthday to refocus to a positive state of mind. I will also not let Kaitlyn's birthday pass by unnoticed as she turns 11 on March 24th. They have always shared birthday parties since their special days are only 1 week apart, but I think this year they each deserve to have the spotlight on thier own very special day!!
Before I end I would like to add the the first round of t-shirts have arrived and they look AWESOME!! We are still accepting orders for Brianna's Brigade t-shirts so if you are interested or if you forgot to submit the order form before the first deadline, we are targeting the end of February or early March for round two! Please contact me at the email / phone number below for an order form.
Please continue to pray for all the DIPG warriors as their daily courage is so inspirational we are left speechless! Thank you for all of your support and please continue to pray for complete healing for these children.
God Bless!Jennifer

Hope Bear!! Friday, February 13

2009-02-13T12:09:00.000-08:00

I had a terrible day at school last Friday after we got back from St. Jude. I felt dizzy, I tripped and hit my arm and my head during the last class of the day. It seemed like everybody was laughing at me! I wanted to drop out of school! It was the worst day of my life! The only really good thing was Gizmo. He relaxes and lays his head on my shoulder and it helps me feel better.
After last weekend I felt better and I was ready to go back to school on Monday.
I made a new promise this week. I am going to pray the rosary every night before bedtime with Mom and Kaitlyn. No matter what is going on or if we don't have time or we are tired, Kaitlyn and Mom and I are going to pray the rosary. When my stepdad and Eric and Haley feel like joining us they can too! I am still reading my books about saints and I pray on my own before bed too.
Love, Bree

Note from Parents:
Since our return from St. Jude we have had our share of ups and downs. Brianna was inconsolable after her day at school last Friday. She just seems to be overly sensitive to anything/everything that happens around her. The teacher assured me that there were boys acting a little goofy in the back of the classroom to try to distract the others and get the attention off of Brianna. No matter what I tried to do to reason with her she insisted it was the worst day of her life and she was ready to drop out. Gizmo definitley proves good therapy as all it takes is for him to lay with Brianna and he knows to just relax and lay his head on her shoulder. Brianna repeated numerous times how much she loved Gizmo.Well, by Monday, she was back to normal being her perky, laughing, goofy, self telling us long, random stories only this time she did have points she wanted to make. This school week went pretty well and she is going (with a big push from me) to attend the Gregory GIG (school dance) with sister Haley, BF Maddy, and her other close friends. I told her the more fun you put into the more fun you'll have. I am sending Brianna and Haley with cameras so it should be interesting what they come back with.I must add a note that I appreciate all of your kinds words of encouragment and continued prayers as I have been struggling over the past several days and needed to return home from work to try to regain positive state of mind and refocus on my faith to carry me through these difficult times. I wish I could plan my meltdowns on weekends when we do not have the kids....but obviously this is not something that can be planned. However, in the midst I found great support from people at work who comforted me and allowed me an opportunity to share my thoughts, feelings, and hope for what the future will hold.I also recieve plenty of support from family and friends at home, especially my husband Bob and my sister-in-law/spiritual advisor Georgia who are both very strong support and immediately change my focus. I will be reliving all events in a positive way as Kaitlyn has decided to enter the Young Author's Contest to write a book about Brianna, her story and wonderful St. Jude! I think this will be great therapy for Kaitlyn! I am looking forward to seeing what she has planned! Brianna, Kaitlyn and I have taken on a new committment which is long overdue!! She is an abslute wonder to me and amazes me with her deep faith!!I had reflected back to when Brianna was a baby and toddler and remebered that the one item she grew attached to (as every child has something whenther it's a "woobie," "blankie," "paciy," "dolly," or "teddy," Brianna's special item was a praying bear named "Hope Bear." I thought how interesting it is that from the time she was a baby she has been clinging to 'HOPE' and it made my heart fill with joy because it is so symbolic and meaningful for her to have always had 'HOPE.'Please pray for Max, our little buddy who we wish we could play with soon! Pray that they have a safe trip for their Make-A-Wish vacation. Also, please pray for Liam and Kole as they continue to fight DIPG. Pray for Brianna and all the DIPG children that thier tumors may remain stable or continue to shrink and make progres towards finding complete healing. We believe in miracles and we believe in the strength and courage of the these children. May God's mercy shine on them and the power of His healing lead them to experience the true power and mercy of our Lord!
God Bless Everyone!
Love, Brianna's family: Mom & Stepdad Jennifer and Bob Siemann, Eric, Haley, and Kaitlyn

St. Jude Checkup - February 5

2009-02-06T13:47:00.000-08:00

Well, I had to go back to St. Jude for 2 days for more appointments. We just got back home today. I had another MRI and I was disappointed that they said it didn't show that the tumor is shrinking. But the good news is that it doesn't look like it's growing either! :) The doctors said there is one part of the tumor that they are going to watch real close because it looks like the shape is changing and it looks different than before. They said it looks more "dense". I'll let my mom write about that stuff cause I just want it to go away!
Thank you to everybody for praying for me and helping me be strong. Love, Bree

Note from Jennifer, Brianna's Mom:
As Brianna said, part of the tumor looks more "dense." The doctor said it could be one of two things...either a reaction from the radiation that is still at work or a beginning of "an angry tumor." This would mean that the tumor will begin growing again. The doctors, nurses and therapists were amazed at how well Brianna is doing and how great she looks! I guess that is why the news was difficult to take in as everything seems to be going so well.The doctors have labeled the tumor "STABLE" and our goal is to keep it that way. Brianna will continue with her strict diet and she has started taking the vitamins and supplements recommended by the nutritionist. We believe all of the proactive methods we are introducing will keep the tumor stable. I explained to Brianna previously that people can live with tumors as long as they don't grow or cause symptoms that make people sick. Our goal is to shrink the tumor or at least keep it stable where she does not exhibit any symptoms.While we continue to pray for her healing and for the tumor to shrink or at least remain stable we are also exploring options in case the tumor does progress. Brianna's father, Matt, will be traveling to Houston to visit a clinic that treats recurrent DIPG tumors. We will also be researching other options and praying for a breakthrough which may prove to be the cure. We feel it is better to be armed with knowledge and prepare for the worst case scenario rather than wait it out. We hope we do not have to utilize any of these other resources but if we do, we need to be prepared. Insurance companies usually do not cover experimental treatments but we hope that the FDA approval of the clinical trial in Houston might convince the insurance company to pay at least part of the cost of treatment.We have been told many times by many people to take one day at a time. I will admit that it seems to be an impossible feat for me as I have always planned my future by days, weeks, months, and even years. I am lucky to have a lot of support from people who are very positive and have a deep faith in God. My faith is tested every day and I question whether it is enough! I am blessed to have a wonderful network of family and friends who are able to keep me focused on the positive. I remember Fr. Ted's homily where he made it very clear that we must make a choice to live in the light or live in the darkness. Whenever I am pulled into negative thoughts or experience negative feelings I always have someone that can guide me back to the light. Though I am struggling with this news and disappointed in the fact that the tumor did not shrink, I will try to focus on how well Brianna is doing right now and be glad that the tumor is stable and has not grown.We are scheduled to return around April 7th-10th. Please pray that the radiation continues to work the next few weeks and that the diet and vitamins provide what Brianna needs to continue to fight the tumor. I will continue to pray for guidance and for a deeper faith in God's power to heal.
Thank you for all of your support and prayers.
Jennifer

Healing Prayers! Thank You! February 2

2009-02-06T13:46:00.000-08:00

Special Note from Brianna's Mom, Jennifer:

It has been quite awhile since I posted an update so I hope you are patient with me as I have much news to share...
We leave tomorrow morning for St. Jude. I am extremely anxious and pray for good test results. We will return on Thursday and I will post an update with any/all results from the trip.
We have been incredibly busy over the last couple of weeks. Bob and I took Brianna to meet Fr. Rookey (healing priest in Olympia Fields) and the experience left Brianna speechless...until the 45 minute car ride home where she couldn't stop talking about the experience. I asked Brianna if she wanted me to hold her rosary as we were getting ready to leave and she glared at me with an "Are you crazy?" look and pulled it away from me. She immediately packed the rosary in her bag as Matt picked the girls up for Disney that evening. She has been praying every night, but has taken a new interest in praying the rosary and reading stories about different saints. Brianna left Fr. Rookey and his assistants with the following advice:1. BE PERSISTENT!! Never stop praying and asking for divineintervention.2. Pray the Rosary!! Every day even if you don't remember how, just sayany prayer you know for each bead.3. "Nag" Mary the Blessed Mother---just like you nag your ownmother...never stop until yourprayers are answered. (This shouldnot be a problem for her at all!!)
Last week I took Brianna and Kaitlyn to a healing mass in Northlake. Thanks to Coach Dougherty and the LW Central football team I was able to make a connection with a parent who told me a story about a woman who was miraculously healed from an inoperable brain tumor. Her name is Colleen Willard and the connection she felt with Brianna is remarkable. Thank you Sharon Kolava for inviting us to this mass as we look forward to more opportunities to become closer to God and feel the love of Jesus and the Blessed Mother. Colleen Willard, laying her healing hands on Brianna, brought us much strength and peace. Colleen made it clear to me and all who were present that, "Brianna is a special child chosen by God and has a strong spirit to endure such suffering." "Brianna has a special purpose and closeness with Jesus and is truly in the hands of God." She is carried by Jesus and also the Blessed Mother who guides her and watchs over her constantly. Colleen leaned over to me and said that she has three words she wants me to repeat over and over, "Don't Be Discouraged!" This is my greatest obstacle to overcome as I struggle daily with these feelings. How did she know to say those exact three words?
Finally, I have several people I would like to thank for their hard work, kindness and generosity.1. Lincoln-Way staff and students for the warm welcome back! It iswonderful to be able to see everyone after so long and finally beable to personally thank them for their continued love and supportfor Brianna, myself and our family.2. Leanne Lacewell and friends for the many meals provided in order tomake my return to work as stress-free as possible. Food is delicious!3. Gregory Middle School staff and students who coordinated andparticipated in the hat day fundraiser for Brianna, as well asthe Baylie's for Brianna, and Brianna's Brigade t-shirt fundraisers.4. Mary Onley for coordinating, and everyone who participated in theJewel Shop-and-Share fundraiser. Your continued support is greatlyappreciated and we hope you are able to help us out againbefore Easter and Memorial Day!5. Thank you to everyone who has joined Brianna's Brigade by purchasinga t-shirt. Initial orders were submitted today, but we will continueselling and placing orders as we receive more requests. Brianna isvery excited that people are going to wear HER t-shirts!5. My husband Bob, whose love and hard work are very much appreciatedand admired. He has taken on many additional responsibilities anderrands while I tend to Brianna and try to get back to mywork routine. I probably don't thank him enough for all that he doesfor our family! The thing I need to thank him for most of all is hisdeep spiritual faith and ability to pray with and for Brianna tobring peace to her when she needs it most. When I feel discouragedor have moments of weakness Bob is able to get me through.
We are very happy to report that Max's tumor is down 30%!! Please continue praying for all the DIPG children and send some extra prayers for Brianna as she undergoes a 2 hour MRI on Wednesday. May she be blessed with God's mercy and experience the Lord's healing power and may she grow in hope and faith as she continues on her spiritual journey.
God Bless!!
Jennifer (Brianna's Mom)

Fundraiser Results

2009-02-03T09:01:00.001-08:00

Note from Brianna's Dad Matt:

Just an update on the fundraiser that was held Saturday afternoon. A great time was had by all and it was a great success! We want to thank everyone that came from near and far to attend! I would like to thank Mike for hosting the event at his pub in Oak Lawn. He and his staff did such a phenomenal job.
I also would like to thank my mom, Pat for all her hard work and dedication to making it the success that it was! She worked so hard on getting the donations and organizing them into baskets. Thank you Mom !
Maria and her mom, Madeline did a wonderful job organizing the donations that they received from people.Maria worked hard at getting donations in and they both worked so hard to make sure everything was put together just right and her mom did a great job making the sauce and the pasta. Thank you for all of your hard work!
My brothers, Ryan, Scott and Justin worked really hard to get donations in as well and helped to organize the event. They all did a great job for not having done this before!
The band Two Dollars played a great set and everyone enjoyed their music! Dan Guzman followed up with his acoustic playing and a great job.Thanks to all of them for donating their time and talents to the event! Everyone enjoyed the entertainment!
The silent auction was a success as just about every item was bid on and won by various people who attended! Thanks to all people and companies who donated items for the silent auction. We couldn't have done it without you.
I must say that I am overwhelmed by the generosity of everyone and the turnout that we had. I was blown away by the number of people that came. Especially those that had come from so far away! Thanks to all of you that came! We certainly couldn't have done this without you either!
We are headed down to Memphis this week for more appointments and tests and most importantly the MRI which will tell us the status of the tumor. Please have Brianna in your thoughts and prayers this week as she goes back down for these results!
Also keep Max, Kole, Skyler, Lizzie and all the other DIPG kids in your prayers as they continue on their journeys!
We will keep you updated as Jennifer will be doing the updates before they leave and again after we get the results.
Thanks for checking in!
Matt

Pictures and Fundraiser

2009-02-03T08:59:00.000-08:00

Note from Parents:

Just wanted to let everyone know that I posted a few pictures from the Disney trip! You can see them on www.carepages.com/carepages/BriannaSharp.
It was an amazing and fun trip for all of us and I am glad you all are able to stop by and view some pictures from the trip.
I also wanted to remind everyone about the Brianna Fundraiser Benefit that will be held at:
Saturday, January 31, 20091:00pm - 5:00pmQuigley's Pub4010 W 111th StOak Lawn, Illinois
The cover charge is $30 per adult ($20 of your cover will be donated to the Brianna Sharp Medical Fund). The cover charge will include domestic beer, wine, soft drinks and food. There will also be a silent auction and live entertainment.
We have bunch of great silent auction items such as 4 Bulls tickets with parking passes, Cubs tickets, Golf foursomes at various courses throughout Chicagoland and some gift certificates to many restaurants.We hope to see you there and we thoroughly appreciate your support.
Thank you so much for all of your love and support!
As always please pray for Max, Kole, Skyler and the rest of the kids fighting the battle against DIPG.
Love, Bree's parents

Last Day at Disney - January 26

2009-02-03T08:51:00.000-08:00

Hi Everybody!
This was a fantastic trip for me. My dad never has been able to take Kaitlyn and me on a vacation before and he told me that my Uncle Brad and Aunt Lisa bought my plane tickets! Wow! Thank you so much. And Grandma made the reservations at All Star Sports and that was an awesome Christmas present!
Yesterday Kaitlyn and I got to swim at the pool right outside our room. It was 78 degrees yesterday and the weather for swimming was perfect and I am glad we got a chance to go swimming. We had to say goodbye to Grandma Mollo and Aunt Kate and Patrick when they left around noon to go back to the airport. It was great to have them with us for the trip and we were sad to see them leave.
We had lunch and then rode the shuttle to Madison's meet. Gianna had a stomach ache and yuck! we didn't have enough diapers with us! Dad got in a cab with her and went back to the hotel. Kaitlyn and I stayed and watched Madison compete where she won two medals and did a fantastic job! It was really cool to see all those girls compete. There is no way I could ever be that flexible!
Today is our last day in Florida and we leave around noon to catch a bus to the airport. This has been a fantastic trip and I am glad everybody is reading this so you can see that even though I have been sick I am getting better all the time!
Love,
Bree

Note from Parents:
Don't forget the fundraiser for Brianna next Saturday at Quigley's Irish Pub in Oak Lawn, Illinois. $30 to get in for all you can eat and drink and $20 of it goes to Brianna's fund. We are still accepting donations for silent auction or raffle so if you have any please contact Matt at 630-670-8481 or by email at sharpie0473@yahoo.com
thanks for stopping by and take care!
Love, Brianna's Parents

Disney Day 3 - January 24

2009-02-03T08:39:00.000-08:00

Today started real early for a vacation day! Kaitlyn and I got up around 7:00 and showered and got dressed and ready for a day of fun at Animal Kingdom and EPCOT. When we got to Animal Kingdom we saw a show with the characters from A Bug's Life. It was a pretty funny show and the 3D effects were really good! Then we rode the dinosaur rid and I laughed and screamed all the way through it. We rode it a couple of times and then we went to Expedition Everest. Some of us thought it was the best ride all day! We rode that ride a couple of times too and then we had lunc. Dad and I had lunch at this Oriental restaurant where they had steamed rice and vegetables. I'm doing pretty good finding stuff that is on my diet.For breakfast I usually have fruit, like grapes and a banana and for lunch I try to find something on my diet and then at dinner I usually have a salat. I have only really had one meal where I got to have a little treat by eating chicken nuggets and a couple of fries. We also brought some organic stuff from Fruitful Yield back home (like organic milk and other stuff). It wasn't as expensive as the food at Whole Foods.
After lunch Maria and Grandma Spinello took Gianna to see Nemo and Grandma Mollo and Aunt Kate took in some of the sights and me and the other kids and Dad went on Expedition Everest about 3 or 4 more times! Its always pretty funny to see the pictures when they get off the ride and after a while we started posing for those pictures. Some of them were pretty hilarious.
When we left Animal Kingdom we got on a bus and went to EPCOT center. Riding the "Soarin" ride at EPCOT was very cool. I think it was Dad's favorite and he kept watching me cause I thought it was really awesome and exciting. All of us kids got our pictures taken with Mickey, Minnie and the rest of the gang! Pluto tried to LICK me, but NO WAY!!!! Alice from Alice in Wonderland gave me a big hug and told her good luck and then we headed to the last ride of the day which was Test Track. This this ride was probably her favorite. When the ride was done we were ready to go back to the hotel.
We headed back to our room and along the way I got another salad (Dad tried some and he even though it was REALLY good). Then we just wanted to head back to the room and chill out. After two days of doing so much I was really tired. I took my chemo and other stuff and fell asleep really fast!

Love, Bree

Note from Parents:
I have been able to upload some pictures to my facebook and when we get back home I will work on getting them uploaded to the carepages site as well as the curebrianna.com site. Thanks to all that have stopped by and given Brianna words of encouragement! Its appreciated more than you will know!
On a side note, I noted today a link on my facebook an article about Senator Chuck Shumer and Senator David Vitter who are sponsoring a bill to help establish a new National Childhood Brain Tumor Network which will help shine a bright spotlight on Brianna's type of cancer among many other types of Childhood Brain Cancers! I will update everyone more on this via the curebrianna.com website as I get more information from Senator Shuman's office which should take a week or so.
Please keep Max, Kole, Skyler, and all the DIPG kids in your prayers. With your help this thing can be beaten!
Love, Brianna's family; Matt, Maria, and the rest of the clan down here in Florida !!!!

Disney Days! January 22

2009-02-03T08:28:00.000-08:00

My vacation started yesterday morning when the limo picked us up at 8:30 am and we went to the airport. We had to stop in Washington DC to change planes and then we landed in Orlando. We finally go to the All Star Sports Resort and met up with Grandma Mollo and Uncle Patrick and Great Aunt Kate! Then I could tell the vacation had really started and I was really excited!We found our rooms and then got something to eat. We brought some things from my new diet from home but we also found some stuff like fruit plates and salads with vegetables that I can eat. I get to eat a few fun things because it is a vacation after all!

Today we got up and ate breakfast and went to Hollywood Studios. I got to ride the Tower of Terror a couple of times and the Rockin' Rollercoaster too! When we got to Hollywood Studios, guess what! There was Aunt Michele and Uncle Gary and dad's cousin Dawn and her family! I was really hapy to see Uncle Gary and Aunt Michele because they sent stuff to me and Kaitlyn when I was at St. Jude. I felt really good today and even kept up with Kaitlyn and that says a lot cause she is full of energy! After Hollywood Studios we went to the Magic Kingdom and rode some rides and it was a blast! We even rode the Monorail back from the Magic Kingdom and got back in time to see the fireworks. They were AWESOME!

When we got back to our room I took my medicine and then went to play with Patrick, Zachary, Madison, Kaitlyn and Gianna. I told my dad that today was so much fun I even forgot about the cancer for a while. I only really thought about it when we got in the bus and I remembered that I had to take my medicine!
Love,
Bree

Note from Parents:

She is fighting and battling this disease with more courage than I think I have ever seen a child have. All the DIPG kids are fighting this disease with the same vigor and Brianna prays for them all. Last night she prayed the rosary as she was laying in bed.
We pray for Max, Kole, Skyler and all the other children with DIPG. Keep them in your thoughts and prayers!
We will do another update tomorrow night! Stay tuned!

Love, Brianna's Family

Home from the Hospital - January 17

2009-02-03T07:53:00.000-08:00

Hi Everybody,

I had to go the the hospital for 3 days because I was taking some medicine for my toe. The medicine made my throat and stomach hurt. I also take chemo that I have to drink every night and it makes my throat and stomach burn. Finally it got so bad I couldn't eat or drink. So I went to the hospital and they fed me through a vein. It's called intravenous. I finally got home today. It was not a fun three days, but I made it home today so I can enjoy at least part of my mom's birthday with my family. I hope I keep getting better so I can go to Disneyworld with my dad and Kaitlyn for a long weekend. We are ALL really looking forward to it!

Love, Bree

Note from Parents:
Thank you for your prayers and thank you Leanne and Addie for your visit and carepackage of goodies! We really appreciate everyone supporting us through our journey and know the extra prayers over the past few days helped speed Brianna's recovery. We plan on enjoying the next couple of days before heading back to work and school. Please pray for a safe, enjoyable trip for Brianna as her energy will surely be tested with all of the excitement of Disney. Please continue to pray for all of the DIPG warriors and their families.
We will keep you updated with Brianna's progress and also with upcoming fundraisers. Jewel Shop & Share is the next fundraiser which will take place January 26th-28th so if you plan on shopping for a big Super Bowl party remember to get your shop and share slips! We will have them ready on January 22. Thank you so much for your support!

Love, Brianna's Family

Second Day Back at School - January 7

2009-01-12T13:23:00.000-08:00

Going back to school is better than I expected! When Mom picked me up on Wednesday I told her I had a fun day and that was true! I decided I would take the bus on Thursday. At night I was still a little nervous but I woke up on Thursday all by myself and rode the bus to school and back home too. I had my friend Kylie come home with me to hang out for a while. I'm getting more energy and it's good to get things back to normal!

Love,
Bree

Note from Parents:
While Brianna was at school yesterday I (Jennifer) had to go to Whole Foods to do some shopping. Brianna's very strict diet makes it very difficult to shop as I need to read every single ingredient on every package. Hopefully, I will soon learn what brands and types of food are acceptable and through trial and error learn her likes and dislikes. Though we have not yet had our consultation with the nutritionist we have started her diet based on what other DIPG families have turned to from the recommendations from a particuluar nutritionist. Brianna's diet is completely organic but it goes beyond that as she also has to avoid sugar (organic sugar, organic brown sugar, artificial, etc.), dairy is very limited (Soy milk is o.k., Organic milk in very limited quantities), and she can only have 100% grass fed, free range beef. Other meats must be grass fed and of course all must be raised free of hormones, steroids, antibiotics, etc. The only acceptable "sugars" are Organic Evaporated Cane Juice, Agave Syrup, and Stevia. Not that you are interested in knowing these details but hopefully it gives you and understanding of how difficult it is to force a kid to make such a drastic change in their diet....AND why it takes me over 2 hours to pick up groceries for Brianna at Whole Foods!!
Through this process we are learning that there are healthy alternatives to every kind of food that Bri loves...however, it definitely comes at a price!!! It is too bad that ALL people can't afford to eat this healthy!! Brianna's diet has changed but it would be impossible do this for the entire family!! Anyways, hopefully Brianna's anxiety over the change in diet and feeling deprived will be relieved when she realizes that I was able to find acceptable alternatives to some of her favorite foods like chocolate "pop-tarts," spaghettio's, cookies, ice cream, etc. She still needs to keep those as special treats and continue to focus on loading up on vegetables, fruits, nuts, etc. We are lucky in that she has always loved vegetables, especially spinach and broccoli! I could not imagine making a change in a younger patients diet who does not enjoy fruits and vegetables. I admit I am quite concerned as to what she will eat when she travels back to St. Jude for her follow up visits and when she travels to Disney World with her dad in a couple of weeks!! Eating out is a huge obstacle, if not impossible when on her type of diet.
I will be returning to work on January 20 and must admit that I am experiencing the same anxiety as Brianna. However, I know that I have an unbelievable support system at Lincoln-Way and look forward to seeing my students and all of the staff after my 3 month absence! I am nervous about getting back into a routine after 3 months focusing my attention on taking care of Brianna full-time. Her return to school made me quite anxious and reminded me of dropping her off at her first day of kindergarten. I was proud and excited for her, but at the same time dreaded leaving her, wondering how she would do, and also missing her terribly! It's always harder on the parents than the children...isn't it?
We would like to thank everyone for their continued support and also let everyone know that not a day goes by where we are not reminded of how truly blessed we are to have you in our lives! Please continue to pray for Brianna, Max, Kole and all the DIPG Warriors as well as for all pediatric cancer patients. We pray for their healing and that their families find strength in their faith to see them through such a difficult journey. God bless!!

Love,
Brianna's Family

January 7 - Back to School!

2009-01-12T13:16:00.000-08:00

I just found out that Quigley's Irish Pub in Oak Lawn will be hosting a fundraiser for me on January 31st from 1-5 PM. Everybody is welcome. There is a $30 cover charge and you can have domestic beer, wine, soft drinks and all food. There will also be a silent auction and live entertainment. If you need more information you can call or email my Dad: Matt Sharp @ 630-670-8481 or sharpie0473@yahoo.com

My family is also taking orders for Brianna's Brigade T-shirts. You can get white or gray, short sleeve or long sleeve with a special logo for my battle against DIPG (that tumor I have.) My Brianna's Brigade logo is a cross wrapped with a gold ribbon and it also has my cross country saying on the shirt, "Start fast, finish faster, start strong, finish stronger!" Short sleeve shirts are $15 and long sleeve shirts are $20. If you want to order a T-shirt, email my Mom at jensiemann@sbcglobal.net or my Dad at sharpie0473@yahoo.com

I went back to school today and my mom picked me up. I was a little nervous but I was happy to go back to school with my friends.

Love,
Bree

Note from Parents:

We pray that Brianna enjoyed her day and that her level of anxiety decreased after realizing the support system she has at Gregory Middle School. Everyone in our community has been so wonderful and compassionate we are truly blessed! Brianna was extremely anxious last night and could not get to sleep, but this morning she woke up in good spirits and when we dropped her off she seemed very happy to be back in school.
After dropping Brianna off at school I (Jennifer) met Leanne Lacewell (Max's mom) at Panera Bread. This was our first meeting and I was thrilled to finally get a chance to give her a big hug and talk about Max and Brianna. The Lacewells' are a blessing and have a special place in our hearts. After 2 1/2 hours I left Leanne with a big hug and a huge feeling of peace that we were finally able to meet and will have each other to support through our difficult journey. We discussed the kids and how they must have been chosen to endure this illness because they are special children with special hearts. Brianna and Max are very kind, caring, loving kids and have a unique ability to connect with all people. Brianna's smile and her openness to give hugs, and her empathy towards others despite what she has to endure makes her very unique. They are both very special to us AND to God.
Leanne and I also discussed how grateful we are to have an unbelievable community of people supporting us in a variety of ways. From giftcards, to medical fund donations, spiritual guidance and support, employers and co-workers kindness and understanding, neighbors support with meals, shopping, and errands, etc. The list goes on and on but we mostly want to thank everyone for all that they do and if we have not been able to send you a personal thank you note, please know that all gifts and actions no matter how big or small, do not go unnoticed or unappreciated. We are so overwhelmed by the generosity of people that we can not even begin to say thank you enough!!
Please continue to pray for Max and Brianna's healing and that they find the peace to take one day at a time and focus on God's love and the blessings in their lives. Fr. Ted's homily last week focused our attention on choosing to look towards the light and focus on our blessings and the many positive aspects in our lives, as opposed to dwelling on the darkness and allowing negative thoughts to enter our minds. Leanne and I both ask for Jesus to come to us when our thoughts turn negative and He helps us focus on the light. We are reminded of the blessings we have, especially the time we have with our children and family. Most of all, we are thankful for the deepening faith we have as a result of having to endure such a difficult road. Now we KNOW GOD and not just ABOUT GOD!

Love,
Brianna's Family

Thursday Night - January 1 - The Puppy

2009-01-07T11:52:00.000-08:00

Note from Parents:

Check out the picture of Brianna's new puppy...GIZMO!!!
Brianna and Gizmo are having a great time. Kaitlyn and Haley are also helping out caring for the new puppy. Eric has decided that his new aquarium (donated by Petland) will be home to a piranha....though we are hoping to change his mind! We are not crazy about the idea of a carnivorous fish!! If we can't talk him out of it at least it will be out of sight in his bedroom!
Brianna is preparing to return to school. She is protesting only because she doesn't want homework! She decided she will return to school and just call if she feels tired and wants to come home. Brianna is looking forward to having lunch with her friends and they should be happy because the lunch table is too quiet with her being gone. They will enjoy her random stories that have no point! BUT...that is why we love her so much!!
Thank you for your support and prayers and we wish you a very wonderful and blessed new year!

Brianna's Family

Thursday - January 1 - My Wish!

2009-01-07T11:44:00.000-08:00

I had a great time with my family AT HOME!! New Year's Eve was the BEST because it was my WISH DAY. Everybody treated me like a celebrity and it was so cool. I got to ride in a limosine and then I walked down a red carpet. There were photographers and reporters and a huge shopping trip to Petland. Make-A-Wish made my wish for a puppy come true on the best day of my live. They even told about it on TV! ABC and FOX news showed me smiling with my new puppy. Make-A-Wish secretly got them to keep the puppy that I had picked out right after I got home from the hospital. Then they gave me a huge surprise party at Petland before the store was really open. After all that excitement, I got to go home and take care of my puppy. It is a Shih-Poo named Gizmo. Kaitlyn tried to be a mommy to the puppy too. Right now, Mom is on duty at night if Gizmo needs to go outside. Pretty soon we will try to put some pictures on the website so you can see how cute Gizmo is!
Love, Bree

Note from Parents:
We would like to thank Make-A-Wish and Petland for making Brianna's wish day the, "best day of her life!" We commend the efforts of everyone involved! Brianna had the entire store to herself, family and friends and Petland staff escorted her around the store for her shopping spree. Renee and Lissa (Make-A-Wish team members) along with Mike and Adam (Petland general managers)and their staff treated Brianna like royalty! They also presented Eric, Haley, and Kaitlyn with generous gifts for the other pets we have at home (two hamsters and fish.) Mayor George Pradel of Naperville (who will always be referred to as Officer Friendly) was at the store. After the party the staff loaded the limo with the items and we headed home to begin our lessons in dog training. We were overwhelmed and grateful that the media was on hand to document this special day. Though Brianna is very shy...she definitely enjoyed the spotlight today. Her story will also appear in the Naperville Sun and I believe the Chicago Tribune. Hopefully, you will be able to read it online if you do not have a subscription!
This holiday season Brianna enjoyed watching Christmas movies, baking cookies, playing with siblings and friends, opening gifts and giving gifts. She did not ask for much as I said before...she was just happy to be home, but we both (despite having trouble getting in the Christmas spirit) ended the holiday season on a high note with her receiving her puppy on New Year's Eve. We enjoyed a quiet night at home, stayed up to ring in 2009, gave each other kisses, and said a special prayer for a happy, healthy, blessed 2009. We prayed for continued healing and for a year full of many blessings, especially Brianna's health! God bless you all and have a wonderful 2009!

Brianna's Family
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Sunday - December 28 - Christmas Card

2008-12-29T12:01:00.001-08:00

Note from Brianna's Family:

We have received many Christmas cards from family and friends and yet have not had the opportunity to send any out this year. Brianna's Mom and Stepdad have posted their Christmas picture on www.carepages.com and promise that next year we will definitely get cards out to everyone.
We hope everyone has a very happy and blessed holiday and we pray for a wonderful and blessed 2009!!!
Merry Christmas and Happy New Year!
P.S. In a few days we will update you with more information about the holiday and the Make-a-Wish surprise!! Check back after New Year's Eve!!

Brianna's Family

Friday - December 19 - Online Fundraiser

2008-12-29T12:00:00.000-08:00

Note from Bree's Parents:
Hello everyone! We would like to pass along the website link to a online fundraiser for magazine renewals and new subscriptions! 40% of the proceeds will come back to Brianna's Medical Fund which was created to help cover what insurance doesn't cover! You will also see that there are some great prizes involved for those who recruit others to join!
Please visit the following link to learn more!
www.magfundraising.com/TheBriannaSharpMedicalFund
If the link doesn't work in this update just cut and paste into your browser and you should be all good to go!
If anyone has any questions don't hesitate to contact me directly!
Regards,

Brianna's Dad, Matt
630-670-8481

Thursday - December 18 - A Friendly Surprise!

2008-12-29T11:59:00.000-08:00

Hi Everyone!
I am slowly getting back to my regular routine. I am a little nervous about going back to school. Part of it is because I have been gone so long and the other part is that the medicine they gave me made me puffy and it's a little scary to see my friends. I'm afraid they will think I look too different. But I had a really cool surprise. Some of my friends from school invited me and Kaitlyn over on Sunday and there was Haley and all of my friends from school! We played board games and they even had special organic snacks that are good for me and my friends liked them too! Now I know my friends are true friends and they won't treat me any different because I got sick. Today I went for a visit to Gregory Middle School and I got a big hug from some of my teachers and I have to admit I'm feeling great! I will do just about anything to go back to school and get back to normal! Sunday the Make-A-Wish people came to see if I had a wish they could grant. At first I wanted to go on a vacation with my whole family, but then when I thought about it, I decided that I would rather have my own puppy. A vacation doesn't last very long, but a puppy can be with you every day! I really want a Shih-Poo. It's half Shihtzu and half Poodle. It is SOOOOO cute! I really hope they grant my wish! Kaitlyn even told them what her wish would be, even though she didn't get sick! She wants to meet Miley Cyrus. That would be cool, too, but I still want a puppy. Last night the doorbell rang and Kaitlyn wouldn't answer it so I had to. There was Santa Claus! He just came by to wish us Merry Christmas and hopes that I feel better. It's really nice to know how many people are helping me get well. Thank you to everybody and I hope everybody has as good a Christmas as I'm going to have!
Love,
Bree

Note from Parents:
Our goal is to have Brianna return to school after the holiday break if only for a few hours a day and then eventually build to a full-time schedule. She is experiencing a little anxiety about returning to school. The swelling from the steroids is going down but we need to have patience. Part of her anxiety was reduced after she was surprised by a group of friends from school. Maddy and Camilla Ose invited Brianna and Kaitlyn over this past Sunday afternoon. Brianna was surprised to see Haley and all of her friends from school. Brianna has an extraordinary group of friends, a protective older brother (Eric-same school) and a sister (Haley-same school)who will be a huge support system when she returns. On our visit to Gregory Middle School, she admitted to Mrs. Binder (band instructor) that she is feeling, "Great!" Not good, but great! I asked her if being at the school makes her miss it and she said yes. I believe that she will do whatever it takes to return the first day back from break!
Sunday late afternoon we were visited by Brianna's Make-A-Wish team, Renee and Lissa. Brianna was interviewed and discussed how her two top wishes would be a puppy or a vacation with all of her family. When asked which one she would lean towards more she admitted a puppy. Since we returned from St. Jude, Brianna was asking daily if we could take her to pet stores so she could look at puppies. I think that after her experience with the therapy dogs at St. Jude she was convinced that a dog would be her number one wish. Ultimately, Brianna has wished for a puppy (she already had one picked out as she has her heart set on a Shih-Poo) and when I called Petland later that evening I found out that the puppy was still there. Petland and Make-A-wish are currently working on granting Brianna's wish which will take place the morning of December 31st. Last night there was a visit from Santa. Bob and I were not witness to this as I was taking part in an online volleyball training session while Bob and Eric were working on making holiday ornaments.
We will keep you updated throughout the holiday season, especially to let you know how her Make-A-Wish day was spent. We would like to wish everyone a blessed holiday season. The St. Jude commerical states, "Give thanks to the healthy children in your lives." and we ask that you pray for those who are not. Though we are home and Brianna is feeling great we would ask that you please continue to pray for her continued healing and for her to be blessed with God's mercy as He restores her to complete health. We also pray for all of the DIPG children and their families that they have the strength and courage to continue their journey with faith and hope. Please pray for all children with cancer that they may be blessed with God's grace and mercy.

Love,
Bree's Family

Sunday - December 14

2008-12-15T07:50:00.000-08:00

Hi Everybody! I had a great weekend. The last time I was here at my Dad's house was when I went to the hospital and they found the tumor. This week I had a lot of time that I felt good and I got to laugh and play a lot. Kaitlyn is being really nice to me so we don't fight as much. My stepmom changed our room here and I really like it so I colored a lot and drew pictures on my dry erase board. Yesterday we went to see Grandma and Grandpa Spinello and then we went to see some people who work at Palmers. They told my I could come exercise in their gym any time I want! After that I ate a LOT of brocolli at dinner and then we watched Fred Clause. It was funny and I laughed a lot and played with Gianna. Today we are going to Grandma Mollos house and then back home to talk to the people from Make a Wish. I sure hope they grant me my wish! If they do I will get a puppy!
Love,
Bree

Note from parents:

We are in the midst of planning a few fundraisers so we will make sure keep doing updates as they are finalized. A fundraiser at Quigley's Irish Pub on the South side is starting to be planned today so keep your eyes out for that.
Thank you for stopping by and seeing what Brianna is up to. We really appreciate all of you that have kept her in your thoughts and prayers!

Brianna's family

Wednesday - December 10

2008-12-15T07:32:00.000-08:00

Home sweet home!
I am starting to get back to NORMAL. Now I can try to build up my strength and not be so tired all the time. I wake up, eat breakfast and then I have a tutor to help me with schoolwork until I can go back to regular school. Then I eat lunch, play and usually somebody comes by to visit. In the afternoon I get tired so I have to take a nap. Then I eat dinner, watch some TV and do my homework and get ready for bed. It's kind of hard to go to sleep right now cause I got used to Mom being in my room with me at Ronald McDonald house. She would watch a movie with me and then we would turn out the light. But now that I'm home it is different so Mom stays with me until I fall asleep. It's just a lot quieter at home but I know I'll get used to it again. I still have to take medicine but maybe pretty soon I won't have to.
Love to everybody!
Bree

Note from Parents:
Hopefully, Brianna will soon be able to be weaned off of her anxiety medication. However, it serves a dual purpose because it also serves as a back-up to her nausea medication. She has been fortunate enough not to have nausea as a side-effect. I am sure the prayers and the medication are serving her needs.
Brianna has a homebound instructor coming to work with her for 1 hour each day. Mrs. Romano is very nice and Brianna even has the energy to complete extra homework in the afternoons and evenings. Bob told her it is good to see her doing homework with her siblings...just as it was before we left. She is also enjoying the normal routine of playing with Haley and Kaitlyn and is looking forward to seeing her friends soon.
We have enjoyed visits from Uncle Jeff, Brendan, Aunt Jackie, Uncle Dave, J.J., Aunt Georgia, Grandma Close, Grandma Siemann, and Great Grandma and Grandpa. Everyone is thrilled to see that Brianna is feeling much better and has her personality back!
Thank you everyone for all of your support! Please continue to pray for Brianna's continued healing and all of the children fighting DIPG: Max, Kole, Keleigh, and Liam.
God Bless!
Brianna's Family

Monday - December 8

2008-12-08T14:20:00.000-08:00

Note from Brianna's Dad and Stepmom:

As I drove home from Memphis with Kaitlyn, my mind had gone back over the journey from day one when we had recieved the diagnosis. This diagnosis had us really thrown us for a loop and was something that we were certainly not prepared for. And as I thought about what got us through this time during her radiation treatment and being so far away from home I was reminded again that it was all of you that had kept us in your thoughts and prayers that helped get us through it all. We thank you for that as it was comforting to see how many people that Brianna has touched through this difficult time in our lives.
I would like to take the time to thank some people that were instrumental in helping Maria and I (as well as Brianna) get through these tough times. I would especially like to thank my parents. My mom and Mike found the time to make the trip down to Memphis to visit Brianna and take her to Corky's which has some phenomenal Memphis BBQ. And in the evening the kids were able to swim at their hotel. Thanks Mom and Mike for coming down!
My Dad and my stepmother Sue and my sister's also found time in their busy schedules to come down and visit Brianna a couple of times. Grandma and Grandpa Sharp brought Brianna her first IPOD and she was in love with that thing from day 1. She still listens to it everyday! My sisters Faith and Julie each came down and brought Brianna some things to help her pass her time. Brianna and Kaitlyn love spending time with them as they have their "nerd academy" which I am told I am a member of (its an inside joke I won't understand I am sure).
I would also like to thank my Aunt Michelle for her love and support and sending Brianna and Kaitlyn things to help them through this difficult time as well as sending Jennifer some great inspirational books to read as those helped her through some hard times while in Memphis as well. Also a shout out to my Aunt Kate and Aunt Shiela who have also helped us through a very difficult time by sending some gift cards and such to help get through this rough time as well. My cousin Kelly also sent Bree some iTunes gift cards and Bree put those to good use! My sister in law Lisa and her husband Brad have also helped tremendously as well, without them I would not be able to take my girls to Florida next month! They bought us airplane tickets so we could watch Madison compete in Disney World!! I am fortunate to have the family that I have and I can't really put into words how grateful I am but hopefully I can get the chance to see you all over the holidays so that I can!
I also want to thank my work family! From the time I recieved the diagnosis, they have been a great help in getting through the first few days. The "Brianna" team has been nothing short of amazing. They created the www.curebrianna.com website, the content and picture uploads to the website. They also helped with the Christine Magnuson visit which was really cool and coordinated the Olympic flag and other things Bree got from many Olympic athletes! So thanks!
I would also like to thank my wife's parents as they have really helped with some painting and home improvements in the home, including a little renovation and redoing of the girls' room here at my house as well! And finally I want to thank my wife for holding down the fort here in Chicago while I was down in Memphis. She is a tremendous partner and is my rock and support on a daily basis and I could not possibly get through this without her.
I hope everyone has a wonderful holiday season! We are preparing for Christmas just as you all are but find this holiday season especially unique because we have the great gift of all of our family and friends and we could not thank you all enough for what you have done for our families and especially for Brianna. I hope to put a holiday video clip of Brianna on the www.curebrianna.com website sometime soon here for everyone to see!
Have a great holiday and we will keep you updated on everything with Brianna throughout the holiday season!
Love,
Matt and Maria

Sunday - December 7

2008-12-08T14:15:00.000-08:00

I am finally home! When we got here my first surprise was that my bedroom was painted aqua, just like a tropical beach! I have a lighted palm tree and ornaments, a beach chair, shark teeth, grass skirts, surf board, signs and fish and all kinds of stuff! I LOVE IT! Thank you to everybody who helped do all the work.
Love,
Bree

Note from Parents:
We had a couple of obstacles to overcome in our trip home, but we made it and enjoyed our first weekend resting at home. In a previous update we thanked everyone in Memphis. This update is to thank the home team in Naperville. Matt will post an update tomorrow thanking his team.
Thank you to the White family for painting Brianna's room a beautiful Jamaican aqua color. It's perfect for her new tropical beach theme. Thank you Bob, Eric, and Haley for moving furniture and getting the room ready for painting. Thank you Aunt Pat, Uncle John, Dan, Aunt Jackie, & Grandma Close for beautifully decorating Brianna's room. Uncle John even suggested removing the dresser and adding a Tiki Bar. (Maybe give her at least a few more years!) She loved her new room and is very grateful to all who worked hard putting it together. Kaitlyn is planning on her theme and it appears she may go in the opposite direction as she suggested an arctic theme (polar bears, penguins, northern lights, snow, ice, skiing, etc!) If you get too warm in Brianna's room you can just head over to Kaitlyn's to cool down! Haley will take her time thinking about what theme she will go with...she always has a difficult time making up her mind! :-)
Bob, Eric, Haley & Kaitlyn met us at the airport. We thoroughly enjoyed the car ride home as Brianna was giddy with excitement...talking and laughing non-stop. When we turned into our subdivision we noticed that every single tree had blue, pink, and green ribbons tied on them (Brianna's three favorite colors). The Ose family organized a "ribbon team" so Brianna could see the love and support from all of our neighbors.
Bob and I would like to personally thank all of the neighbors for their help over the last couple of months. Jennifer Charboneau organized a meal team where many people provided Bob, Eric, Haley and Kaitlyn with dinners while we were gone.
Thank you Gina (Eric & Haley's mom) for providing a meal and also helping out by taking Haley and Kaitlyn to see the HSM3 movie so Bob and Eric wouldn't have to endure that torture!
Thank you to Max's and Brianna's supporters who coordinated the ornament fundraiser. The ornaments are beautiful!! If you missed out so far they will still be selling/taking orders at the 95th Street YMCA tomorrow.
Thank you to our extended Siemann family. Georgia, thank you for your spiritual support in getting us through the past two months. Bill and Connie for coming to visit and for taking care of Bob and kids while Brianna and I were gone. Mike, Steve, and Amy for offering any help and support when needed.
Thank you to Gregory Middle School teachers, parents, and students for their unbelievable support for Brianna, Eric, and Haley! Thank you for the wonderful cards and letters of encouragement for Brianna. Thank you 7th grade teachers for the holiday giftcard for our family.
Thank you to Brianna's friends and their parents for their love and support. Brianna has a remarkable group of friends that love her, support her, and protect her through everything. Please know that Bob and I feel very blessed to have the support of their families as well. Edwards', Didiers', Binkus', Oses', Whites', Riveros', and many more...thank you for everything!!
Thank you Eric, Haley, & Kaitlyn for welcoming Brianna home, making her feel loved, and helping her get back into her routine of playing and having fun. Saturday morning, Haley and Brianna decided to step out on the patio in their robes and winter boots to see if it was really cold and if it was actually snowing. When Bob found out he immediately ordered them back into the house...but only after taking a picture!
As we settle back in the comforts of our home and prepare for Brianna's return to school, we ask that you continue praying for her, that she continue to heal and that the tumor continues to shrink. Radiation will continue to work for another 3 months...so we will pray for the tumor to continue to shrink and to go into remission. The last MRI showed an overall 20% reduction since our arrival. (That number is only a guess by doctors as it is impossible to give an exact number. The doctors have to confer with the radiologists and others to measure a tmour that is not a perfect shape. The doctor said that different areas are shrinking at different rates.)
Please continue to pray for Brianna, Max, Kole, and Keleigh who are all fighting DIPG. Please pray for their complete healing, that they may all experience God's grace and mercy. We will enjoy this holiday season more than ever as we have grown in our faith and have been blessed with an outpouring of friendship and love from a community greater than one could ever imagine! God Bless!!

Brianna's Family

Thursday - December 4

2008-12-08T14:08:00.000-08:00

Start fast, finish faster. Start strong, finish stronger. That's exactly what I did! Today I crossed the finish line! Operation Radiation...Mission Complete!! The last MRI is over and we should know the results soon. Even after the last MRI I was still a little nervous that something might happen to keep me from going home tomorrow. Mom asked everybody to pray for a good test and it worked because she said the numbers were low. I was so excited I gave the BIGGEST smile! When I was waking up after the MRI the nurse asked who was going home tomorrow and all I could do was grin. And then I got more news because the doctors said I don't have to come back down here until February!!! I thought I would have to come back next month but they said the tests could be done at home! So I DO get to go home after all. I'll have school at home for a little while and some physical therapy and then - BACK TO SCHOOL and all my FRIENDS!!!
THANK YOU EVERYBODY!
Love,
Bree

Note from Mom:
I asked everyone yesterday to pray for a good EKG reading as that might have been one thing that would prevent us from making it home. Once again, our prayers were answered. The doctors told us today that the official reading was 436!! Yesterday we believed that number was 460!! I know God is answering our prayers! Thanks be to God! When the doctors told us everything is great and assured us we would be leaving tomorrow, Brianna was so excited she could not hide her biggest smile! As Brianna was waking up from sedation from her two-hour MRI the recovery nurse asked, "Who is going home tomorrow?" The nurse said Brianna gave her a huge smile. We got an early Christmas present as the doctors told us we do not need to return until February. Her December and January appointments and tests can be done back home!! She will return home, continue with physical therapy and home-schooling, and eventually return to school sometime after the holidays. She will most liekly return on a part-time basis and work up her endurance to return full-time.
Today we would like to thank numerous people at St. Jude for the outstanding care and compassion on Brianna's behalf. Dr. Baker & Dr. Piya are Brianna's neuro-oncologist physicians and they are absolutely the most caring men. Some family members were able to meet Dr. Baker and in their brief meetings were able to tell just how special he is. Nurse Dori from E-clinic and nurse Crystal were very sweet and they both work incredibly hard at making the children feel safe and cared for. Childlife Specialists Amy and Krystiana did an excellent job working with Brianna, especially early in our treatment when Brianna was afraid she would never make it home again and struggled with homesickness throughout. Amy and Krystiana were able to provide Brianna with activities an projects to keep her spirits up. Amy also did a wonderful job keeping mom's spirits up as well! Kimberly had a rough time with Brianna when she started working with her on physical therapy. When Brianna started therapy the side effects from the medication had her in no mood to do any activity and she would constantly complain about having to go. Kimberly is excellent and was able to see Brianna's real personality emerge and has helped Brianna make tremendous progress. Dr. Merchant is Brianna's radiation physician and he is also a wonderful man. He appeared on the Today show Thanksgiving morning when he was interviewed about the type of radiation therapy patients are receiving at St. Jude. There are way too many people to list individually so I will shout out a huge thank you to the ladies in patient registration that we had to meet every single morning for a new armband, patient services, radiation technicians, all of the triage nurses, schedulers, receptionists, shuttle drivers, and staff at Ronald McDonald House.
We would also like to thank Lori, Scottie, and Kole along with Gary, Valerie, and Keleigh...DIPG families and RMH neighbors who we have become part of our family. Everyone we have met at St. Jude and Ronald McDonald House will forever hold a very special place in our hearts and will forever be in our prayers. It is an unbelievable experience to be surrounded by an overwhelming number of people who devote all their time and efforts to care for children like Brianna. Throughout our stay and through all of the appointments and treatments we felt as though Brianna was the only patient at St. Jude. Everyone in every department works so hard to make sure each child is cared for in a very special way. Thank you St. Jude!!
Thanks be to God! We will continue to pray for Brianna's complete healing! We will also continue to pray for Max, Kole, and Keleigh along with all children with cancer, and that their families have the stength and courage to endure the difficult road.
I will pack my laptop and the next time I post an update I will be sitting at my desk back home!
Love and Prayers,
Brianna's Family

Wednesday - December 3

2008-12-08T14:04:00.000-08:00

Tomorrow is my last radiation treatment - YAY! Then I have one more MRI for 2 hours - yuck. But at least I get to sleep through it. Dad and my sister Kaitlynn are going home tomorrow and they are taking a LOT of my stuff with them. On Friday I have a couple of appointments at the hospital and then I get to leave here at 3pm. I am Finally on my way home. Thank you to everybody for praying for me and visiting and doing all the stuff you did to help me get better!
Love,
Bree

Note from Parents:

Brianna has made it to her last radiation treatment. 8:30 AM will be treatment #30 and she will then follow up with another 2 hour MRI. We will also meet with the doctors tomorrow to finalize any/all paperwork and discuss all that we have coming up with the future treatment and visits. Everything looks good but we are a little concerned that her EKG score is once again above 450. The last 3 EKG test are 460 or higher. Still normal for her age, but the drug company in charge of the protocol wants the number to be under 450. Please pray that tomorrow and/or Friday's EKG is below 450. We don't want anything to hold us up from making it home Friday night!! We don't know if this would hold us back, but we would feel better knowing that the score is back in range for the protocol. We are sure the doctor visit will provide us with more insight.
Matt and Kaitlyn will be heading home tomorrow morning. Of course we are sending as much stuff home as possible yet still leaving enough to get by for two more days. We have a long day ahead of us tomorrow and we even have an appointment or two Friday morning. We called for a shuttle to pick us up at 3 PM.
Thank you for all of your kindness and generosity! Hopefully, this is one of the last updates we type from the RMH. We will continue to keep you posted and appreciate your continued prayers! God Bless!

Brianna's Family

Tuesday - December 2

2008-12-03T08:45:00.000-08:00

Yeah! Only two more days left! I bet Uncle Jeff would remind me of his cross country saying. "start fast, finish faster, start strong, finish stronger." I am finally feeling like my old self! I think I get to stop the medicine soon and that's good because it made my whole body swell up and I don't look like me right now. The doctors say that as soon as I get better and all the medicine is out of my body my muscles will come back and I won't be swollen any more. That's good news for sure! I am so excited to go home so I can sit by the fireplace and watch TV like I used to on movie nights. Kaitlyn and I got to visit with the therapy dogs today. They are golden retrievers and their names are Tank and Cooper. They both sat with their heads in my lap. They are amazing. It's like they know I have been sick. I was glad to see them one more time before I go home. That's all for now! I just hope that this cold I have won't keep me from going home, but Mom is giving me lots of stuff to drink and keeps telling me that a cold isn't enough to make me have to stay any longer.
Love,
Bree

Note from Parents:
Brianna has gone from 16 mg/day on the steroid medication down to .5 mg/day!! Hopefully, by Friday she will be completely weaned from the steroid medication and can focus on rebuilding her muscle mass and strength as well as enjoying being home for the holiday season. Brianna mentioned three times today that she is so excited to come home. She asked if we can have a fire and watch t.v. I don't think that will be a problem! We have been looking forward to the first full day back home with our family and enjoying our movie nights in front of a fire. We will sleep in, decorate the house, and undoubtedly enjoy a stream of visitors for a few days. I warned Brianna previously, "Be careful what you wish for!" As much as she has been homesick and wishing she were home, she is going to be overwhelmed by all of the people who will want to see her. That is a wonderful problem to have!! We can't wait!! I also took Brianna and Kaitlyn to the Chapel for communion. We enjoyed a moment to reflect, pray, and thank God for all of our blessings.
Brianna is fighting a bad cold and is trying to rest and drink plenty of fluids in an attempt to get back to normal by the time we return home. She is very nervous that her cold will keep her from being able to make it home Friday night. We continue to pray for her to continue her progress and we assure her that a cold will not keep her from flying home on Friday night.
As we prepare to come home we would like to thank everyone for their continued support and for their unending prayers. We grow in our faith everyday and gain courage and strength from all the kind words and expressions of love and support. Brianna inspires us every day with her courage. Despite everything she is going through she continues to show everyone that she cares and she is always in tune with others' feelings. She even wrote an note to Kaitlyn where she told her that, "You are the best sister ever and I love you!" The two of them still fight and tease each other (though not as frequently) but Brianna's note and Kaitlyn's immediate concern for every cough or sneeze from Brianna makes our hearts melt.
God bless! The blood of the lamb will heal Brianna. Have faith and be patient as God will heal in His own time.

Brianna's Family

Monday - December 1 - MY LAST WEEK!!!

2008-12-02T11:37:00.000-08:00

Finally I only have a few days left. It was kind of sad when everybody started going home but then Dad reminded me that in just a few days I will be back home and I can sleep in my own bed! That made me feel a lot better.

Note from parents.:

I think Brianna is starting to really see that her time to go back home is just about finally here! I think it really hit her when she was realizing that her visitors from the weekend were starting to head back. Maria and the kids went back early Saturday and she started to get a little sad about that and then Bob left but quickly reminded Bree that she was close to the end of radiation and that there was nothing to worry about and that she would be in her own home on her own couch and able to sleep on her own bed soon! Then Bridget, Bernadette and Lauren said their goodbyes Saturday night because they were leaving early to try and beat the bad weather that was coming Chicago's way on Sunday.
Once all the visitors were gone Jennifer and I reminded her of all that she has accomplished so far and that the radiation finish line was within sight! Brianna was beginning to come down with a pretty good cold later Saturday and we took her to the Medicine room at St. Jude to get checked out. The med room is kind of the equivalent of a conveinent care back home. The doctor checked her out and told us to come back Sunday morning to get a swab test done of her nose and throat. The following morning we did just that and the tests found that it is just a cold at this point. It has progressed a little more into her chest but I went to the store today to get her some cold medicine.
Brianna has done an amazing job since first arriving in Mid October to start this journey and has come so far! The love and support from all of you has definitely helped her and we thank you for all your continued support and prayers. We are proud of Brianna and couldn't be luckier parents to have her as our daughter. If we could clone Brianna the world would be a better place for sure!
As parents we are charged with caring for and teaching our children everything from tying their shoes to walking and everything else but I must say that I have learned alot from Brianna during this journey. She has taught me what it means to have grace and courage even when faced with a really difficult challenge. We all have challenges in everyday life but I think I will reflect on these last couple months everytime I am challenged with something that I feel is impossible. I think Brianna has taught alot of us what the true meaning of courage is.
I will be heading back to Chicago with Kaitlyn on Thursday morning and hope that she isn't bouncing off the walls during our drive! Brianna and Jennifer are still set to arrive back in Chicago late Friday evening. Our Make a Wish meeting is scheduled for the afternoon of December 14th and we will keep you all updated on the progress of that as well!
Thank you all again for your love and support and caring during these difficult times for our family. Your support has helped but the wind at Brianna's back as she is ready to cross this radiation finish line!
Gratefully yours,
Bree's Family

Thanksgiving Weekend

2008-12-02T11:31:00.000-08:00

It has been really great to have so much of my family with me in Memphis. I started to cry when Bridget and Bernadette and Lauren got here on Friday. They got to go on a tour of Ronald McDonald house and Bridget made a special dinner for me with two of my favorites - spinach and broccoli- YUM! Bridget is going to cooking school and is learning how to make special healthy food for me. She even fixed a fresh pomegranate. After dinner we rode a carriage and went to a place called Silky O'Sullivans for something to drink and a snack. I was really tired cause we have done a lot of stuff this week so I went back to go to bed.

Note from Parents:
Bob and I took our time enjoying Beale Street with Lauren and Bernadette. When we returned to the hotel Kaitlyn still had energy to burn so she went swimming again.
Everyone met for breakfast at the RMH and Maria and kids said goodbye to Brianna and headed back home. Bob stayed until the afternoon as we needed to load his truck with as many boxes as possible. The girls and I will be living out of suitcases and with just enough activities to keep us entertained for the next 6 days. I can't believe we have less than 1 week remaining!! Radiation treatment ends on Thursday and Brianna also has another 2 hour MRI that day.
Brianna enjoyed today by spending time with Kaitlyn, Bridget, Bernadette, and Lauren playing a game, playing cards, watching a movie. My three very generous nieces (three broke college students) treated me, Matt and the girls to dinner. We ordered in so we could take full advantage of our relaxing day at the RMH. We are very grateful to them for making the long road trip with limited budgets. They are all sweethearts and it is easy to see why Brianna and Kaitlyn love them so much. They will leave tomorrow morning to head back home.
Finally, I have received word that Brianna's bedroom is finally complete! Thank you to the White family for having her room painted her favorite color (Jamaican aqua) and to Aunt Pat, Uncle John, Aunt Jackie, Grandma Close, Bob, Dan, and others who moved furniture, purchased items, and decorated her room to turn it into a real tropical, beach theme. We have only been planning her bedroom for over a year! It always seemed like we could never find a good time to get it all done! So thank you to everyone who helped make it happen!! We are so appreciative. I hear there are palm trees, surfboard, beach chair, grass bedskirt and valance, themed lamps, and much more. Knowing the talents of my mother, sister and aunt I can only imagine how spectacular her new bedroom will be. I can't wait for Brianna to see it!!
Let the countdown begin! Love to all and thank you for all of your prayers and support! God Bless!

Bree's Family

Friday - November 28 - Thanksgiving!

2008-12-01T12:59:00.000-08:00

I've been really busy this week so I haven't been putting much in my blog. That's a good thing cause it means I'm feeling better! Everybody in my family was here! Mom and Kaitlyn and me got excited to see my stepdad on Tuesday and then we met my Dad and stepmon and my brothers and sisters and we all went to Spaghetti Warehouse for dinner. After that we all went back to hotels so I could have radiation and physical therapy and school. On Wednesday Mom showed me my plane ticket home - it's REAL and I REALLY get to go home to my own bed! On Wednesday afternoon we went swimming and then we went to the mall and went shopping.

On Thursday morning I got to have breakfast with everybody and then we went to Ronald McDonald House for Thanksgiving dinner. They had lots of fun stuff for kids to do. We made gingerbread houses and also played a game. We got to have dinner all together for once. The best part is that I don't have any doctor appointments for 4 whole days! After I woke up from my nap all of us kids went swimming at the Marriott and then we had some snacks before we went to bed.

On Friday we got up early so we could go to this famous hotel called the Peabody because they have this duck march. It was kind of weird but it was fun too. Everybody stood in line for like 2 hours to watch some ducks march from the elevator inside the hotel to the fountain. They said the ducks have been doing it for a long time. It WAS really cute the way the baby ducks followed the mother duck. Bridget is going to make a chocolate pie for me the healthy way and I can't wait cause chocolate is one of my favorites! Tonight we are supposed to go on a trolley ride and that will be fun.

Love,

Bree

Note from Mom:

While Brianna was attending school I picked up our plane tickets for Friday, December 5th. We will arrive at O'Hare around 10:15 pm. (Our only option....we don't care as we are just looking forward to being home in our own beds!) At lunch I showed Brianna the tickets and this is when she finally realized this is, "for real!" I warned her about being cautiously optimistic. Please pray that everything goes well this week so we can make our trip home Friday evening.

We also took time to begin packing up the room so we can send as much home as possible. Matt and Kaitlyn will head home 1 day before we leave so he can take any remaining items and drop them off with Kaitlyn returning home. We will attempt to live out of a couple of suitcases for the next week.

Friday morning Bob and I took the girls to the Peabody Hotel in order to watch the ducks march from the elevator to the fountain. We thought the ducks came out at 10am but they actually parade out at 11am. It was a good thing we were early as at least a few hundred people crowded the lobby and balcony to watch the 5 ducks parade out in a line from the elevator to the fountain. The Peabody is a gorgeous hotel and it is just an experience to see the architecture and of course watch the ducks. After the parade we left for RMH and again met Matt, Maria and kids. Matt and Maria decided to take the girls around town until Brianna's cousins. Bridget, Bernadette, and Lauren should be arriving any minute. Bridget, the future chef will be cooking some healthy, sweet food for Brianna. She is craving a chocolate pie and I think Bridget will be making a dairy free, sugar free pie. She has plenty of resources from culinary school so I am looking forward to more advice.

Tonight Bob and I will take the girls along with their cousins downtown on the trolley. We will go on a carriage ride, walk down Beale St., and go back to the Marriott and enjoy swimming or playing cards.

We hope everyone had a blessed Thanksgiving. Thank you for your support and your prayers!

Bree's Family

Tuesday, November 25 - Waiting!

2008-11-25T14:30:00.000-08:00

I can hardly wait! My stepdad and stepmom and Zachary, Madison and Gianna are supposed to get here tonight to celebrate Thanksgiving with me. And on Friday my cousins Bridget and Bernadette and Lauren will come to stay for a few days too! The doctors say that I can go back home pretty soon! Starting right now it is supposed to be only two more weeks before I can finally go home! I have a lot to be thankful for this Thanksgiving-that's for sure!
Love,
Bree

Note from Parents:
Today we had a longer day at the hospital, but the appointments were easy. We met with the doctors to determine a possible date we can return home. Jokingly, we tried to get the doctor to initial our calendar. He caught himself before putting pen on paper! :-) Though he didn't put pen on paper, he said we can speak with the travel office about scheduling our return tickets for Friday, December 5th!!! Please pray especially hard for all of Brianna's tests and appointments to continue to show progress and show positive results that will allow us to return home to our friends and family. This is 1 week sooner than we were anticipating. We are cautiously optimistic as we know that there is always the possibility for a postponement if there are scheduling conflicts or if doctors are not happy with any of the numbers or results.
Brianna is the sweetest, most caring child because despite what she is enduring she is always thinking of others first. She has been spending her own money to purchase gifts for her parents, step-parents, and all of her siblings. If you cough, she makes sure you are o.k. Aunt Jackie said she wishes she could have a fraction of the sweetness that Brianna possesses. She doesn't think it is possible for anyone to be more thoughtful, caring or kind.
Kaitlyn is keeping up with her need to clean and organize as she will wipe down all dining room tables at the RMH at least once/twice a day. She sweeps and swiffers the floor of our room. She is currently cleaning our bathroom and doing laundry. She also ran downstairs and did the dishes as well....See how much energy she has! She's also been diligently working on her homework assignments.
We would like to wish you all a very happy Thanksgiving holiday. We know we have a lot to be thankful for this year. This experience is showing us that we have a network of family and friends that we can never thank enough. Everyone is demonstrating unbelieveable amounts of kindness and compassion. Please continue to pray for Brianna, Max, and Kole that they may be blessed with God's healing power. The Great Physician has worked miracles. We have already witnessed many small miracles and blessings and we'll have patience to allow God to work his miracles. "Patience is having faith in God's timing." "He will answer prayers in one of three ways: Yes, Not Yet, I have something better in mind." These two quotes/thoughts have occupied our minds. We will have patience and we will continue to have faith that the blood of the lamb will cure Brianna. Patience that all that we endure is for a purpose and Jesus is with us through it all.
God Bless! Happy Thanksgiving!
From Brianna and families!

November 23 - The Start of a Week of Giving Thanks

2008-11-25T06:53:00.000-08:00

Sunday was the last night that Grandma Close and Aunt Jackie and my cousins JJ and Dan were going to be here so we went to the movies and saw Bolt. It was really good and I'm glad we got to do something fun with them before they had to go home.
On Monday we got up and had breakfast with them before they had to go home. It was sad that they had to go back to Chicago but I'm glad they got to visit for a while. Then we got on the shuttle to go to St. Jude. The doctors said I didn't have to take so much medicine now and that's good cause I can sleep better when I don't and I don't get so tired so fast. I had physical therapy today and it helps my muscles stay strong and gives me energy. After dinner we played Clue. Kaitlynn is fun. She's like the energizer bunny! Thank you for reading my blog and for all the presents and stuff you send. It helps the time go by faster.
Love,
Bree

Note from Parents:

THANK YOU to Grandma, Jackie, JJ and Dan for coming to visit! We are glad you got to come to visit and see what kind of a place St. Jude's is. After breakfast we jumped on the 7:30 shuttle over to St. Jude to start our day of appointments. Dr. Merchant told us that Brianna could go down in dose again on the steriods and that is awesome news! Brianna's increased energy and her ability to sleep better at night is a combination of the steriods going down in dose and the radiation treatments having a positive affect. Brianna had her physical therapy today which is helping her keep her energy level up and keep the muscles working for her. We give many THANKS that the treatments are having the affect that they are!

We had dinner and Jennifer and I played Clue with Kaitlyn and Brianna. It was a nice way to spend some time with both kids. As their parents Jennifer and I give THANKS everyday for letting God bring them into our lives. In case anyone was wondering... Kaitlyn is still like the Energizer bunny-- she keeps going and going and going -- well you get the idea.
Jennifer has explained how grateful we are for the love and support we have recieved from the Lincoln Way Family but I would also like to give a shout of thanks and place some praise on the team at my employer's office for the tireless love and support and work that they have put into creating the website (www.curebrianna.com), organizing the Christine Magnuson visit and the other assorted gifts that the Olympic athletes will be sending to Brianna. The "Brianna team" at work has done an exceptional job and we THANK them for their love and support. The company has become a great family that I have been a part of for only a short time but they have given so much of their time and efforts to Brianna's cause.
This week is Thanksgiving and we are reminded to recall all the things that we are thankful for. The situation we are facing doesn't excuse us from remembering the great people and great things in our lives. So as we all join this weekend as a family here in Memphis we give thanks for all of you that have joined in praying and sending love to Brianna. THANK YOU !!!
Regards,
Brianna's Family