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!

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!

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.

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

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