Sunday, November 5th
Our sweet angel is sleeping soundly this morning in her parent's warm and cozy bed after raising both arms up high in the air and shouting with pure joy and elation yesterday afternoon....." I'm HOME, I'm HOME!!!". It was a wonderful surprise and treat when her physician announced she could go home and perfect timing too, we walked in right as the Ducks kicked off in Eugene with brother Ryan in attendance. Her homecoming this time truly lifted her and sparked a much needed firework and smile in her parents as well. The past 10 days in the hospital waiting for her precious body to repair itself and slowly come back was by far the safest and kindness to Claire as compared to her two previous post chemotherapy returns, but for some reason Claire and I found ourselves in a small slump. Whether it was a factor of boredom, anticipation or just a little despair, we were both a little down at times. This recovery was filled with some unfortunate emotional challenges and an underlying anxiety so strong it ate away at us. Survival from cancer is largely dependent on the ability to remove or kill more than 90% of the tumor initially, through surgery or radiation, and then destroy any microscopic cancer cells that might have spread with chemotherapy. Claire's rare and deadly case does not allow for the administration of standard medical care. The inital trauma and injury to her brain from the hemorrhaged tumor was extensive and as we have described earlier, it is a divine miracle that she laughs with us today. Her right side of her brain was nonexistent and pushed completely to her left side, looking hopeless of a full recovery. The initial MRI scans of her beautiful brain after her life saving surgery was shocking and absolutely debilitating to view. At that time, we, along with her neurological-oncology team, choose to attack her cancer, which was not clearly identifiable due to the additional swelling, blood and other byproducts from the injury, with a new chemotherapy protocol developed by one of Claire's local physicians, Dr. Nora Wu. Claire has received three rounds of an innovative and promising formula of chemotherapy agents in an effort to allow her brain to naturally recover and isolate the remaining tumor. The very best outcome expressed by her medical team from this treatment protocol would be only to stop the tumor from growing and try to perform a second surgery to extract the remaining mass in time. The chemotherapy formula has proven sucessful beyond everyone's wildest expectations as the tumor did not spread AND it actually decreased in size from three months ago, topped with a neurological recovery that is a real medical mystery. Unfortunately the remaining tumor mass is very deep and located in a crucial and life threatening area of her brain. We learned on Thursday that the risk to Claire of a second surgery is far greater then the small benefit of extracting only some of the remaining tumor. 100% resection of the evil mass is not possible. Some in the medical community believe without immediate full brain and spine radiation to kill the remaining tumor would leave Claire with no chance of survival as the mass will return uglier and deadlier then before. But the pediatric oncologists at UCSF are willing to accept Claire, with Dr. Wu's endorsement, in a very experiemental and fairly unknown treatment option with hopeful optimism due to the tumors current response experience and outcome. Claire's own healthy and freshly regenerated stem cells will be harvested tommorrow at UCSF taking a day or two to collect the necessary number of cells required. After a small break allowing Claire to regain some strength and a renewed state of health, Claire will return to UCSF to receive a very high dose and new chemotherapy formula, independently administered would be too toxic and prove fatal, but her body will medically be rescued with the transplant and reinsertion of her own stem cells. She will undergo three of these high dose chemotherapy rounds with the hope and belief that it will kill more of the tumor and be followed by local radiation to the tumor bed instead of full brain radiation. Full brain and spine radiation necessary to eradicate Claire's tumor, would severely and significantly effect her remaining quality of life. Radiation to such young and developing brains under approximately 10 years old, deteriorates the brain's cognitive thinking along with other deficits. We feel since Claire is such a miracle to date, how can we not give her the opportunity, to hopefully survive, but survive as the loving, intelligent and independent gift she is now. We think she has the abilty to rewrite the medical books and investigate further use of stem cells in cancer treatments. If this treatment protocol deems unsuccessful at anytime during the next few months, full brain and spine radiation will continue to be an option. The amount of research, discussion, contemplation and risk assessment has been exhausting and attacked by every family member involved. Claire's team is not limited to the medical professionals in Sacramento - she has touched family and friends near and far, and inspired complete strangers throughout the world to BELIEVE and fight with us. She continues to bring joy and simple pleasure to us daily, expecially throughout the difficult and emotional time experienced over the past week. I had to release a few tears Friday night when I thought Claire was sleeping, only to have this petite and soft hand reach out and caress mine and be serenaded with the Barney theme song by her sweet voice...."I love you, You love me, We're a happy family, With a great big hug and a kiss from you to me, Won't you say you love me too!". She is perfect!. Her desire to play hide-n-seek everyday was refreshing, untouched that she is wrapped in IV and feeding tubes hanging from a overly large and noticable pole not to mention confined to a 10 x 10 hospital room but the game is no different to her and definitely enjoyable to all participants. Although, now fed through a nasal feeding tube, to eliminate her nutritional rollercoaster ride, she requests only "chocolate milk" (our key word for the Boost Energy Drink) to be administered, whether she can taste it or not chocolate will always be her preferred food - again she reminds us, the true Claire has been unaffected by this horrific disease. We embark on a new and frightening journey today but have learned during this powerless struggle, to stop, listen and touch Claire as much as possible as she provides an endless amount of hope and strength to all that come in contact with her. UCSF should be honored to get to met and experience Claire.