The next steps

After much research (with limited data) and many meetings with doctors, we have decided to postpone radiation as long as possible and will do low-dose chemo for at least seven months. We will save radiation for a recurrence, if there is one. We imagine that folks are wondering about his prognosis. The data is sparse, but the survival rate for kids is his situation who follow the chemotherapy path is probably between 33% and 50%. The fact that he had a total tumor resection, and optimal response to the chemotherapy (i.e., no disease at mid-term and final MRI) is good, and may well push him closer to the 50% mark. In one study about 17% of kids did not even respond completely to the chemo. We embarked on this process with trying to maintain the maximum quality of life for him for a long as possible, hopefully a normal lifetime. And we will continue to work with the doctors to make sure that happens.

He will have an MRI every three months and visits to the clinic about every two weeks at first, then once a month. His hair is already starting to grow back and he should be able to resume most activity, as we are told that the side effects of the low-dose chemo are negligible. The doctors will take out his Broviac catheter in February if all goes well. Mason is not too sure about that part as that would require them to draw blood from his arm.

Then we just wait. The most critical time is the first 18 months post chemo for recurrence. We will just have to watch him closely and hope that nothing comes back.