Hello, everyone. Michael had his latest set of scans last week, and Mike and I got preliminary results late Thursday night, and we received more details on Friday. The residual disease is still present. The tumors in Michael’s skull have decreased slightly, and the tumors in the liver show virtually no shrinkage. Needless to say, this was not the news we were hoping to hear. The chemotherapy he received during his transplant was the highest dose he has received yet, so there was a chance that it could have decreased the remaining cancer more significantly. But unfortunately, that did not happen.
The good news is that, unlike five years ago, we have options left. We are exploring radiation, although in Michael’s case, it may not be the best solution. We are still planning to enroll him in a phase 3 clinical trial for six months beginning around the first of September where he will receive antibody infusions for five days each month, which will increase his chances of not relapsing by about 20%. And there are other options as well, which I can explain later, depending on what we decide to do.
We are taking a family road trip to my parents’ beach house in Galveston, which will be a welcome change of scenery for all of us. While we are there, Mike and I are meeting with two neuroblastoma specialists in Houston – one at Texas Children’s Hospital, and one at M.D. Anderson. These consultations, along with other research, will help guide us as we enter this next phase of Michael’s treatment.
Some other good news is that his blood counts have stabilized since his transplant, and his immune system has finally turned the corner. So on Friday we got the green light to ease Michael back into his old routine. He can go to restaurants, movies, and even have a few play dates. But we still have to take it slowly, and be very careful about our surroundings. Jennie and I took Michael to Toy Story 3 yesterday to celebrate his freedom, and he had a terrific time. With lots of antibacterial wipes, of course.
We will be gone from July 28th through August 8th. We hope all of you are enjoying your summer, and thank you for all of the ongoing emails, phone calls, letters, cards and meals. It has helped us more than you can imagine.
With love and hope,
Alison & Mike