Hello to all,

Thank you so much for the continued support. Claire's recovery from the surgery has been amazing and she has been progressing well. The speed at which she was able to function post brain surgery amazed many. She returned home with no complications.

Soon after Claire's discharge, Shannon and I began discussing next steps. The cancer had returned at 16 months but remained in the original tumor area. Her disease was not behaving as a typical S-PNET, showing no signs of progression to the spine or spinal fluid. We had been told on a prelimanary post-op report that all tumor was removed and the status was good. We discussed options and came to a desicion to request a treatment of highly focal radiation with oral chemotherapy. This is a "trial" treatment option which we researched and felt comfortable with. Standard treatment at recurrence would be whole brain and spinal radiation. The outcome from this treatment would be devastating to Claire. She already is facing challenges due to treatment and original injury.

On Tuesday, I attended a scheduled meeting with the Sutter team prepared to inform them of our desired treatment. We were fully aware that the Sutter team would most likely not be able to provide our chosen direction. Sutter is not a research hospital and tends not to go outside the "standard" of care protocol. We felt comfortable with alternative opionions from UCSF and Children's Hospital of Los Angeles. We were able to get a firm level of committment from our contacts that focal radiation was still a viable option. The cancer had returned but in the same area, and was resected.

I entered the lounge with the Sutter team prepared to state our case. Then came the news which I was not prepared for. I was informed that Claire's post-op MRI had a new "lesion".

I can not explain the emotion.

This news is obviously not good and very concerning. The new lesion is estimated to have appeared between her original pre-op mapping MRI and the post surgical MRI (13-15 days).

Shannon and I did not take this new's well. But we are committed to our HOPE. We have started the process of searching for a medical facility who will take Claire and allow us to stay with our original plan. CHLA is a strong possibility and we still will ask UCSF to review her case at Tumor Board. Sutter's position is to go with full cranio-spinal radiation, which does not secure a cure, or to move to a more palliative option. The quality of life issue is important to us and that's the direction we will pursue.

We will not stop believing that Claire will overcome and beat this. I ask that all of you stay with us and continue to pray and provide positive thought's for Claire.