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!
Monday, October 19, 2009
Needed Prayers & Best Wishes - Oct. 16, 2009
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
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
Wednesday, September 30, 2009
Finding Hope When You Feel Hopeless - Sept. 29, 2009
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)
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)
Tuesday, September 1, 2009
Remembering Brianna... in Her Dad's Words - Sept. 1
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
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
Thursday, August 27, 2009
Back to School - August 26, 2009
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!
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!
Monday, August 17, 2009
Brianna Tribute Video - August 15
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!
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!
Monday, August 10, 2009
In Bob's Words - Brianna Remembered - August 7
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.
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.
Thursday, August 6, 2009
She's a Butterfly - August 5
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
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
Monday, August 3, 2009
The Brave Little Soul-Jen's Remembrance of Sweet Brianna - August 1
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
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
Friday, July 31, 2009
My Letter to Brianna - July 31
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
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
Monday, July 27, 2009
Visitiation, Funeral Mass and Luncheon
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!
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
"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.
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.
Friday, July 24, 2009
Peaceful Night and Blessed Morning - July 24
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
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
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!!
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!!
Thursday, July 23, 2009
Struggling
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)
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
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!!
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!!
Wednesday, July 22, 2009
"Whatever" & "Amen" - July 21
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
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
Thursday, July 16, 2009
Drastic Changes in 2 Days - July 15
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.
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.
Monday, July 13, 2009
Kaitlyn is My Superhero - July 12
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!
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
"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
"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
Thursday, July 9, 2009
Great Day Ending With a Rainbow - July 8
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!
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
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
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
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.
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
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
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
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)
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
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.
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
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!!
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!!
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