January 25th

We are sorry for the limited information on Claire's status. We have been trying to bring back some sense of a "normal" life and enjoy Claire. As we stated in the early January post, Shannon and I have spent much time consulting, researching, and analyzing treatment options for Claire the past several weeks. Our goal has always been to cure Claire's disease, but we have strong feeling on quality of life issues. Standard care for Claire has been, and still is, undergoing full cranio/spinal radiation. The effects of this treatment on a child are substantial. The fact that Claire is with us at 18 months is close to miraculous, and that her SPNET tumor has recurred 2x without dissimenation is "outside" the normal path of the disease. We were leaning towards UCSF for focal radiation treatment. The pediatric tumor Board at UCSF agreed to treat Claire with that option. We felt a small bit of relief knowing that she would at least be only a few hours from home and could come home on weekends. Radiation treatment is given over a course of 6 weeks, M-F. Within hours of the UCSF consult we were contacted by both UCSF and our lead Sutter M.D informing us that UC Davis had aggreed to provide the focal treatment. This was welcomed news as Claire could stay in Sacramento for the treatment. I have to say that even those who agreed to treat her locally expressed the fact that this is "non" standard treatment with a poorer chance for cure. We met with UCD radiation oncology and started the preperation process for Claire's treatment. Preparing for brain radiation is obviously a detailed process. Claire underwent a "masked" CAT scan followed by a more comprehensive MRI. The medical team then creates a "3D" image to precisely pinpoint the radiation doses. After Claires's MRI we were contacted and informed that the tumor had continued it's growth (as expected) and there was an area of concern. The UCD neuro-surgeon felt that the concerning enhancement had breached into an area of the Brain's cerebral spinal fluid. This would mean that microscopic cancer cells may be leaked into the fluid and "riding" throughout the CSF. After review UCD contacted us on Wednesday evening to express the concern that Focal may not be the option due to this finding. Shannon and I were a bit set back. Claire is scheduled to start treatment on Monday January 28th. At this time we are going forward with our desire to attack the disease with focal radiation. Claire will get radiation to the tumor bed with expanded margins of her right hemisphere ( the damaged area). She will also begin a 42 day regimen of oral chemotherapy. At this time she is strong and we believe she can tolerate this treatment.

I know I need not ask, but please send positive thoughts and prayers for Claire in the coming weeks. I believe that all those who care have had an impact on her survival to this date. There is no question in our minds that this amazing support "team" has impacted outcome.

The road we have traveled can not be explained. But you folks have helped us so much along the way.

I will end with saying that I have been blessed to witness the most amazing SPIRIT fight a horrible disease. I have learned more from a 5 yearl old child than you could attempt to imagine. What a gift.

Thanks to all of you.