August 30th

Claire still remains at Sutter. She contintinues to show many of the side effects of chemo. Her morning blood count did show signs of recovery but the opportunity to return home is not known. She is scheduled for her first post-chemo MRI tommorrow and we look forward to good news regarding the stabilization of the tumor (no growth).

Looking forward to providing positive news soon.

Thank you all.

August 28th

Claire remains in the care of her doctors at Sutter Memorial Hospital. Her white blood count continued a decline and this morning some of her red blood numbers followed. This afternoon she received a transfussion of red blood products and continues to be monitored for infection. Her initial blood culture taken on Saturday showed no sign of bacterial growth but samples will continue to be taken untill she can maintain a normal temperature for 24 hours, with no assistance from tylenol, and no bacteria identified in her blood. Some good news came late today from Shannon, who reported that Claire had not had a fever for 8 hours. Our hope will be that her blood counts rebound and a normal temperature can be sustained for a period of 3-5 days. This could allow Claire to return home for the Holiday weekend. She had already been scheduled for a return admitance to the hospital on September 5th for her 2nd round of Chemo.

Please keep her in your thought's and prayer's. I can not find the word's to express our gratitude to those who have reached out. Just know we appreciate all of the support and look forward to providing positive updates in the day's ahead.

Sunday, August 27th
Unfortunately, there isn't a lot to add to Claire's current health status or hospital re-admission today from Chris' posting last night. We are experiencing, for the first time, the very scary and ugly downside fall into the real 'black hole' of chemotherapy. It hits patients approximately 7-10 days post treatment start date. The fatigue, nausea and lack of appetite associated during the inital receipt of chemotherapy is always thought to be the worst part, probably because people can assimulate to this stage and it's visual, but I think the fall afterwards is just, if not more, devastating. Children, as we all know, do everything faster and much more dramatic than adults ....which can be wonderful when watching or measuring Claire's neurological advancements, but can be absolutely overwhelming when seeing her precious body stripped of all the necessary and vital "good" cells she requires to fight off any viral or bacterial infection. The drop of all "good" cells can happen quick and hard in children, easily hitting rock bottom within a 24 hour period - like Claire did, (for you medical professionals she went from 1900 to only 20 white blood cells over night) and sadly the ability to grow new and "good" cells and help fight off any infection in her body does not occur as rapidily. The next few days and test results will give us a better idea of the type of infection she has currently (which is likely as she incrementally spiked some bad fevers last night) and how her body will hopefully start to recover and climb back up to normalcy. When she is not on fire though, she smiles big while constantly requesting food items to be added to "her grocery store list" and when raving about how much she loves her Ryan and Reese-ee. And although, I spent a lot of yesterday on the floor in the hospital ward hallway frightened and requiring several boxes of tissues, PLEASE don't get down or lose any of your positive thoughts or momentum - its needed and continues to assist us during this difficult journey. As Claire's physician stated this morning Claire has already broken or exceeded all records or predictable outcomes to date, her re-admission now and quite possibly post chemotherapy in the future is actually expected and normal, and it's OK when Claire reacts like everyother child with cancer (as most of the pediatric hospital ward is housed by sweet and young children post chemotherapy then during their treatment cycle), an awful fact we learned first hand yesterday.

August 26th

Hello All,

Claire suffered a minor set back this afternoon. She began running a temperature reading at home of 101 degrees which at this point in her chemo cycle is a sign to call the hospital. She is back at Sutter Memorial due to a low white blood cell count (very normal for pediatric chemo patients). She is being treatd with IV fluids, antbiotic, and an injection to assist in the rebound of white blood cells. At this point she did not need any red blood product transfussion. More information on Claire's condition will come soon.

Thanks again for all the kind words, prayer, and positive thoughts.

Thursday, August 24th

Our Claire Came Home Today!!!!!!

Boy, when they say there will be great days and others that are less desirable and to only LIVE day-to-day, we now understand. Her week of chemotheraphy and lack of nausea was so incredible and then to be topped off with an unheard eating jamboree on Saturday was pure delight. We were on top of the world. Well, for the first time late Sunday, her chemotheraphy treatment and its effects surfaced. Claire lost all of her appetite, her irritability and aggitation was hightened and she complained regularly of aches in her legs and arms. She would yearn to be rubbed and then cry stating it hurt when touched. To enhance her bad mood she was very constipated and uncomfortable. She was just plain grumpy about everything and everyone, although again to everyones amazement still absolutely no nausea to date. It's difficult to see and hear her distress and voice her strong feelings of unhappiness, i.e. "LEAVE ME ALONE". And as a parent, my initial response is to make her apologize and correct her inappropriate behavior, but its the nurses and especially the physicians, that have rejoiced when attacked by her fighting spirit and unkind words. So, I am slowly learning to actually smile too as she verbally and sometimes physically objects to her medical treatment or regular checks. By early Tuesday morning, we entered into discussions of inserting a feeding tube with additional hospital stays throughout the next week. We all lost a little steam. Yet, surprisingly by Tuesday evening - and half a peanut butter and jelly sandwhich later - things were looking brighter. Her mood also considerably improved after the relief of about a 6-7 day period of no bowel activity. Wednesday morning our precious food critic and eating machine started coming back. McDonalds chicken nuggets, fries with ketchup, milkshakes, cheerios, cheeseburger, carrots, cheeze-its, and or course "chocolate medicine". Papa Jack long ago re-named Hershey Chocolate Bars as "chocolate medicine", it's always been one of those sacred papa and grandchild special codes. It has new meaning now. Her therapy continues up a very steep and rocky hill but Claire has decided she is going into the rock climbing profession. She can now sit up on the edge of the bed, legs dangling over and with very little to no support and can control her head and upper body successfully. She has started balancing herself automatically as well. Just like infants learn to place their arms out or counter move their upper body in the opposite direction when leaning to one side, Claire doesn't fall over anymore. Hooray! She is twisting her sides reaching for objects and exhibiting lots of other signs of neurological progress and promise daily. In the first couple of hours home, she even started to crawl a little and now easily rolls over, straightens her back with her arms extended and readjusts herself independently, if slipping down in a sitting position on the couch or chair. She even took a few steps walking with assistance and aid. It's heartwrenching but incredibly inspiring that from the moment she entered back home she has acted like and requested to do and go just like before ... it's almost like she doesn't realize she can't just get up and walk down the hall, or play with her toys in the same manner. It's obvious though that her non-disabled type of thinking and belief will only expedite her recovery faster.

It was Tuesday evening, after I had left for home - as Chris and I trade off part of every day and each full night at the hospital - that Chris called informing me of Claire's bowel movement and P.B. & J eating achievement, that I started to realize the different traits and strengths we both possess. After 12 years of marriage and trying to compete with our variations in personalities, characters and child raising techniques, I began to understand and appreciate how important our different styles and attributes are and their affect on Claire's recovery. And then when I expanded this thought to our immediate and extended family, it was overwhelming. EVERYONE contributes something vital and necessary to Claire's current healthy state or to our families ability to just continue to survive. Reese could not be happier and lights up the entire hospital ward during her visits and although privately scared and unsure and missing Claire considerably, Ryan seems as secure and loved as we could hope for during this last stressful month.

Again, today was joyful beyond belief and life confirming that although small and precious, Claire's will to live is larger and bigger than we can imagine. As much as we and Claire want everyone to run right over to share in our celebration, from now til really next Tuesday her "good" blood cells that fight off infections will be at its lowest and she is very susceptible. Give us some time to adjust to Claire's new home life and for her blood count to raise back up and then we will open our doors wide and with pure elation to all that want to see her smiling face. Thank you again for all your support and for contributing to her ability to return home today.

Wednesday, August 23rd

Hello to all,

Claire continues to make progress upon completion of her first cycle of chemo. She is still at Sutter Memorial Hospital but we anticipate the opportunity for her to return home between treatments. Shannon will be providing more details soon. Thanks for the love, support, prayers and interest.

Sunday, August 20, 2006.
Today Claire received her last dose of chemotherapy, of her first full cycle, and she is accepting it unbelievably well to date. She was cleared and graduated to a soft / moist food diet yesterday (previously on only pureed food) due to her current loss of neurological control to ensure all intaking food or drink goes down her esophagus not her bronchus (leads to the lungs), the two tubes are right next to each other. Claire proceeded to special order and eat 5 grilled cheese sandwhiches, 2 chocolate milkshakes, chocolate pudding, and a soft chocolate chip cookie. Anyone that came into the room, including housekeeping, she would stop and hold up her hand with five fingers pointing straight up and share her cheese sandwhich eating record. Of course her appetite will vary during treatment and yesterday was widely unusual, but the nurses loved it when she would request "another cheese sandwhich please" before even finishing the last. Oh, and in pure Claire style, by the last sandwhich refused to let anyone feed her as she had to "hold it and eat it by myself mom". The pictures above were taken yesterday and you can see the pure joy and sunshine Reese brings to Claire during her visits. We have now added daily "Reese Therapy" to Claire's treatment plan and believe it equals all medical therapy available. Even one of our other angels, Dr. Yim, a pediatric oncologist, gave Claire a look of utter disbelief and pleasant surprise of her current heathly state during his morning rounds today. Claire is on a state of the art anti-nausea medical regimen, not available at UCDavis, Oakland Children's Hospital or Kaiser currently. We learned / confirmed she is receiving medical care from some of the leading pediatric oncologists, neurosurgeons and aligned oncology healthcare professionals known nationally. She is definitely in the right place for the best chance to fight and survive her cancer. Her occupational/physical therapy was lightened during the last few days as her reaction to all the chemotherapy agents was so unknown and frightening. I am beyond thrilled to say that I am running out of adjectives to adequately describe her "unbelievable" and "astounding" neurological advancements. Here is a small example, on Thursday, Aug. 17th, just four days ago, during her therapy session, it took two of us to slowly and carefully move Claire's legs and arms into a doggy style / infant crawl position on a soft mat and she was unable to even try to push her self up with her arms, let alone, raise her head. Today, I asked her to roll over on her side by herself while laying flat on her bed to help me if she wanted her pillows adjusted - I am the mean therapy mom always making her work. She voluntarily continued, after her successful side roll, to place herself on her stomach, bend and raise both knees underneath her and then proceeded to stretch her arms out in front of her and raise her entire body up unaided (again similar to an infant crawl position), to top off her remarkable act, she then independently lifted her head up and looked around. If anyone has ever had their newborn acheive this monumental step, you can recall your full body elation and celebration.....that doesn't come close to the absolute rush and pride that overcame me. It was equally exciting to see Claire's smile as she too was just as proud. I could not stop leaping for joy and praising her, so she performed her new accomplishment two more times for me. I floated around her hospital room for the rest of the day and am still walking a little lighter even now. Her speech continues to improve and expand beyond our wildest dreams at this point. I even had to firmly remind her of good manners during a received phone call today. She did not lose the mysterious instinct, like all children, to want something or demand your full attention ONLY when you are on the phone - I immediately stopped and practically started to cry during the call as it was like any other day at home with her. Overall it was a really good day for her and large relief for us that her chemotherapy treatment was so kind to her this time. I did notice today that her largest achievements and overall significant changes have all occurred on Sundays....it can't be just a coincidence. Thank you very much.

Welcome to Claire's Web Site

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.