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Saturday, August 19, 2006
Today is exactly 21 days from when we shockingly and tragically entered into our worst and unimaginable nightmare - the diagnosis of a malignant brain tumor in our vibrant, beautiful, athletic, independent and definitely one-of-a-kind loving Claire. I feel I need to recall some of the past developments and moments from the last three weeks to describe and praise Claire's already miraculous recovery to date. And going forward I will try my best to share her progress and hopefully continued success.
But before I do, I want to sincerely thank everyone for their heart felt cards, presents, meals, prayers and good thoughts as it has played a significant part in Claire's and our entire family's ability to fight. Your love and well wishes are with us daily. Thank you - Chris and Shannon.




Saturday, July 29th. We spent our last scheduled full day, of our one week, family vacation at the beach in North Tahoe. Claire swam like a dolphin, built three story sand castles, ate her favorite lunch - corn dog and fries, and out ran all the older boys at the local playground. She persuaded her dad into swapping sleeping arrangements, so she could sleep with me and dad would sleep in the bunkbed with brother Ryan that night. I can still hear her sweet voice as she jumped up and snugged into the king size master bed asking if baby Reese (Claire calls her Reese-ee) could sleep in the middle between us, patting the spot she already allocated for Reese. Thank goodness I was taken by her adorable smile and agreed until they were both sound asleep. It's amazing how life altering events can be recalled with such explicit detail and seemingly in slow motion, but at 10:22 pm Claire awoke screaming uncontrollably. She proceeded to get sick and then became completely unresponsive. We later learned how unlikely her symptoms were that night and that in their absence she would not have survived the evening and just never awoke. At exactly 11:58 pm, a brokenhearted female emergency room physician at Incline Village Community Hospital informed me of the discovered mass from a CT scan. Claire was immediately life flighted to Reno, Nevada to a larger hospital only 12 airflight miles away and received a medication that stopped the hemorrhaged tumor in her brain.
Sunday, July 30th. We will never be able to write, speak or think about this date ever again without feeling incredible agony. Sutter Health is a large, non-profit hospital and physician integrated system with locations throughout Northern California. As most of you know, I have worked for the last 8 years for the independent physician association (IPA) affiliated with Sutter Health, called Sutter Indpendent Physicians. I selfishly needed Claire in a specialized and reputable children's hospital with respected surgeons and physicians that I have knowledge and confidence of their medical capabilities, plus being close to home would prove to be invaluable while confronting this situation, so, we life flighted Claire from Reno to Sutter Memorial Hospital in Sacramento. One of our newest angels, Dr. Ciricillo, a pediatric neurosurgeon, removed a significant portion of the golf sized tumor on Claire's right size of her brain over a 5-6 hour surgery. The malignant tumor was confirmed to be a Primitive Neurectodermal Tumor (PNET), approximately 6 cm by 6 cm, located basically in the middle of her frontal and temporal lobes. Complete removal of the tumor was not an option due to the significant vascularity of the tumor and location. Her prognosis after surgery was very poor and between the remaining tumor, bleeding and swelling of the brain, 24-78 hours after surgery would determine if she would even be allowed the opportunity to fight this disease in the future. With NO exaggeration, there wasn't a single second during this excruciating period that a family member or loved one wasn't talking, singing, reading or sharing a story in sweet Claire's ear. Her favorite soundtrack, The Sound of Music, played repeatedly in the background. I believe in my heart and soul she heard it all and she is here today because we never gave her a chance to leave us.
Thursday, August 3rd. Claire's swelling and vitals stabilized and it was the first time (of many throughout the last few weeks and hopefully lots more to come) that Claire proved that all statistical probabilities and medical science can not fully predict a person's strength and will to survive. I will never, EVER, again complain or think negatively of Claire's tenacity, determination, independence and strong character. She is a fighter!!!
Friday, August 4th. This was a big day as it provided us the first glimmer of her basic neurological state. Claire shocked everyone as she opened her left eye and cried out for "daddy" within 3 hours after her ventilator was removed. It was the best present we will ever receive.
Sunday, August 6th. There were more signs and indications each day that our Claire was still present with every soft and simple word spoken. Unfortunately, a life saving device in her brain that drained the excess cerebral fluid was leaking and the risk of infection was too great, resulting in the removal of the drain completely. She was unable to expell the fluid individually and slowly crept back into a sleep state over the next day or so.
Tuesday, August 8th. Claire underwent an additional surgery to place a permanent shunt in her head that will assist in the draining of her excess cerebral fluid, as well as, a broviac was inserted in her chest. The shunt will be with Claire for her life and works similarly to a cardiac defibrillator - if her fluid level ever exceeds the established normal level it will drain the fluid into her abdominal cavity to be absorded. And after just a week, we think the shunt is a medical gift from above and works wonderfully. The broviac will be present throughout the entire chomotherapy period and will allow all IV medications and blood draws to be administered through this one tube without continually injecting or sticking her precious body. It happily replaced the millions of IVs, tubes, etc., covering her arms and legs over the last week. So we like it too.
Wednesday, August 9th. Claire hadn't woke up from her prevoious surgery before having to under go anesthesia again for a complete MRI of the head and spine with some additional tests. Claire proved them wrong again as no other tumors were discovered in her brain or spine and her cerebral fluid was malignant cell free.
Sunday, August 13th. This day will be remembered as the real day Claire woke up and shined. Her neurological development astounded all medical professionals associated with her care. Claire's swelling from the excess fluid and second surgery had decreased considerably with both eyes opening and showing her ability to track people and objects throughout the room. It was her verbal and cognitive advancements that day that were the most miraculous. Within a 6-8 hour period, Claire sucessfully went from answering simple yes or no questions, to multiple choice questions (i.e. showing her an object and giving her two choices of its color, size or orgin), to without any provocation or assistance, listing her special preschool classmates names and even spelling her own name incorrectly just like before - C.L.I.R.E. (ever understood why the "A" was always missing but I loved that it still was). And during a quiet, peacefull moment after rejoicing in Claire's verbal developments throughout the day, out of the blue Claire softly broke out into Julie Andrew's DO-RA-ME melody. It will forever be the sweetest song I've ever heard. Another amazing moment of this day, was when baby Reese was brought in and Claire responded with an ear to ear smile and reached out and held Resee's hand.
Tuesday, August 14th. Her neurological successes continue slowly but promising, it will be a lot of ups and downs with her full capabilities still really unknown as the brain is a magical mystery, especially in children, when recovering from such a significant insult, trauma and stroke. Her rehabiliation is and will be difficult and is expected to last at least throughout the next 9-12 months. Tuesday also marked the first day of her approximate 4-6 day chemotheraphy treatment, designed by another angel, Dr. Wu. She already feels like part of our family and we adore her. Claire will receive an aggressive treatment plan for 2-3 cycles, each cycle 3 weeks apart. Our goal is to stop the remaining tumor from growing and stop the blood supply it is currently receiving, so Dr. Circillo can perform an additional surgery and sucessfully remove all the tumor. The current plan, post surgery, is to undergo 6 weeks of radiation therapy and another year of chemotherapy, again in 3 week cycles. As much as her neurological rehabilitation is visually forthcoming and we all feel she has the drive to reach her full potential, it is ultimately the evil and deadly malignant cancer cells in her brain that will prove to be her biggest fight.