Friday, November 17, 2006
The week of Monday, November 6th began with the receipt of a promising gift from Claire and ended with wonderful and heartfelt blessings from family and friends that left us speechless and in tears as we reflect on the charitable event. Our visit to UCSF proved successfull as our "I think I can, I know I can...Super Claire" surpassed the minimium number of stem cells required to start the high dose chemotherapy protocol that holds ALL our HOPE for a full childhood and long life for our angel. The halls of UCSF were bursting with young energy and talent, yet command a high level of respect from their long history and reputation of medical excellence. Although the harvest resulted with a positive outcome, it was not complete without some agony. Claire has been nothing but a model patient throughout this entire ordeal and has endured what must feel like a constant personal violation with powerless vulnerability and exposure by all the healthcare professionals trying to cure her. As a parent the role and responsibility to your loved one during their illness is endless and sometimes just as exhausting and frustrating as I'm sure Claire experiences. After three days of continuous medical intervention, Claire beat me to it by yelling, screaming and throwing her arms around exclaiming, "Everyone - Leave Me Alone!!". The endearing phrase "leave me alone" has always had a comical nature to it in our family as it was originally showcased and used often by Claire's Auntie Erin as a young, head-strong child and teen, but when repeated by Claire with such emotion that day, I felt nothing but pure empathy and instead of trying to comfort her or persuade her to stop....I joined her. It took both of us a couple of quiet hours - untouched - to regain our composure and interact with people again. The battle to wellness is not limited to just fighting the actual disease but not mentally surrendering to the endless monitors, tests and procedures necessary to complete the act. Claire woke up in Sacramento on Wednesday, November 8th and without a pause requested to see and play with Reese-ee and Ryan. They remain her primary thought and yearning. As Claire had a quick blood draw at the hospital on Wednesday afternoon, the nurse commented in disbelief of Claire's apparent selflessness as she contemplated on the BEST cartoon band-aid selection for her two siblings without a choice for herself. Saturday morning was very special for Claire as she brought Ryan his water bottle after each quarter of his raining soccer game with pride. The second or younger child in the family ends up spending a lot of their time playing at their older siblings' practice or game. Attending brother's soccer game was pretty significant for Claire and to feel the soft rain drops on her head again was magical too. Saturday night for Chris and I was equally as spectacular and memorable. We were touched and honored that so many new and close friends and family took the time to celebrate Claire and sponsor the "Claire Miller Foundation". We sincerely appreciate the enormous effort and sacrifice it took to organize the event led by Tim and Karen Reilly, Dan and Gretchen Stecca and Kevin and Loretta Miller. To all the participants, contributors and loved ones - you have filled us with unparallel strength and courage to continue to love and honor Claire through her next treatment cycles and inspired an unconditional belief that miracles don't quit half way - "I KNOW SHE CAN!". Thank you deeply for your unwavering support and most importantly for embracing and cheerishing our Claire and keeping her close to your heart with positive thoughts and prayers. We feel you!! And we continue to need your well wishes and love as Claire started round one of the three high dose chemotherapy treatments today at UCSF. She ate 7 Oreos, 4 packages of Captain Crunch, 2 bags of animal cookies, and a chocolate crossiant from Starbucks all while receiving the two new chemotherapy agents that will soon show their power and ability to destroy... unfortunately not just the evil tumor in her brain. She gets two days of chemotherapy, a day of rest and then on Monday her body will be rescued with her own transplanted stem cells. We are crossing our fingers that she reacts well and is absent of any fever on Tuesday so we can travel back home. It is anticipated that her white count will be zero for at least 10-14 terrifying days and we hope she can fight that war close to daddy, Ryan and Reese in our Sacramento hospital. Her body's reaction and response is unknown and all we can do is HOPE and BELIEVE that she possesses the necessary will, determination and passion for life to keep our beautiful world bright.