Claire seemed to tolerate the initial few weeks of radiation treatment very well. Once we made the decision for full cranio/spinal, her doses were adjusted allowing a transition to the required treatment. As we entered the 3rd week, Claire began to show signs and symptoms of common side effects of RT. Her energy level decreased and she was more than willing to take naps. Her hair really has never had a chance to fully grow back, and in one night completely fell out from the radiated location. Then her appetite began to decrease. It all would soon be followed by the dreaded nausea and vomitting episodes. A tough pill to swallow knowing we had not even entered what will most likely be the most difficult phase of treatment. Claire would eventually require brief hospitalization for IV fluids. It was just our luck that she would need to be admited the night before she was scheduled to attend the "Disney Princess On Ice" event at the Arco Arena with 2 of her old "preschool" buddies. She was so excited when we told her she was invited to this " Mom and Girls" event. When we had to tell her she needed to go back to her "old" hospital and have a slumber party with Mom, you could see the disapointment in her entire body. We reassured her it would be a short stay and in true form she helped pack her bags for the overnight at Sutter. At 11:00 am on the following morning, I was surprised in the shower by a vibrant Claire Miller telling me she was "HOME" and ready for the "SHOW". I had other duties as our Reesy was to attend her first "real" Birthday party. We were very happy Claire was able to attend the event with her "buds" and grateful to the Franz and Lynch families for including her. So this morning began the final 3 weeks of treatment. Claire was excited because her "Little" Grammie Denise was in town for a visit and would accompany her on this morning to her "new" hospital (UCD). Claire can still smile at such things regardless of waking at 6am to report to treatment.

I am unsure of what is ahead. Stopped trying to figure that out long ago. I will hope for continued strength and courage. I will believe miracles happen.

Claire Miller

Bumps Along The Road

Claire began "focal" radiation treatment on January 28th. I had mentioned that there were concerns regarding the tumor progression. Claire's tumor is growing at a very quick rate and showing signs of the aggressive nature of pediatric PNET brain cancer. Although the location of the tumor recurrence has remained local, there are problematic changes. There is a visible extension of tumor into an area of the brain that circulates CSF(cerebral spinal fluid). The concern is that this presents a high chance for dissimination into distant areas of the brain. There is also a visible opening from the tumor/surgical cavity into a ventricle (another pathway for CSF fluid to circulate throught the CNS). The UCD radio-oncolgy doctors began treating Claire with the focal radiation treatment we wanted, but expressed a major concern on outcome due to tumor progression. When UCD agreed they were reviewing MRI film from Claire's last scan in early December. The scans that were taken on December 26th in preperation for treatment showed the questionable progression. UCD allowed Shannon and I some time to seek other opinions, including the Sutter Team who have been involved from the beginning. After much thought and research, we have agreed to move to Full Cranio/Spinal Rt therapy. We have done everything in our power to avoid it due to the consequences on a young brain. The facts and biology of recurring PNET tumors have forced our last hand. If we were to continue with focal rt and the tumor dissiminated (spread) we would have no more options. The size of Claire's targeted "focal" field is very large eliminating any opportunity to provide additional RT to other parts of the brain if the tumor spreads.

In no way are we viewing this fight over. Claire's tumor has not behaved as typical PNET. She did not recur until 15 months from presentation. The tumor has remained a "local" problem. She is with us at 18 months. But we could not ignore the recent aggressive growth and behavior of the disease. Claire has been so amazing and has displayed such a will to stay with us that we were comfortable with this decision.

In the next few day's, Claire will go through the process of preparing for the full cranio/spinal treatment. On Friday she will complete the initial boost dose to the tumor area. Next week she will begin the 5 week whole brain/spine treatment. UCD has agreed to treat her with a lower than standard dose for the full brain/spinal segment. There are ongoing studies utilizing a lower dose to the full brain/spine in an attempt to limit cognitive and other damage.

Continue to BELIEVE in Claire. We Know She Can.