A Pause

One of our appointments this week was a consult with the radiation oncologist. The truth of the matter is that Henry's tumor type is very aggressive, and recurrence is more likely than not. The chemotherapy that he has received is much more intense than 'standard' chemotherapy for medulloblastoma, but what he has done is so new that there is little information available on how well it works for other children like him. The hope and goal is to cure the cancer with chemotherapy in order to avoid radiation.

Radiation is very hard on a young brain. It is more effective than chemotherapy, and if Henry were older would have been the first therapy he received. But for young children and infants, the side effects in terms of brain development can be devastating. Chemotherapy is used in part to buy time prior to use of radiation. The high dose regimen that he has had is designed to avoid radiation altogether.

The fact remains that with the spread that Henry has had to his spine and meninges, as well as the more aggressive cell type that his cancer is made of, we remain very fearful of recurrence, even after all that he has been through. However, the benefits of radiation are unknown, since his treatment is so new.

So we are left with a decision of whether or not to give him some radiation, and if so, how much. All of our doctors stress to us that there is no right or wrong answer to this question, a personal decision balancing survival with quality of life. Different families make different decisions. Though Henry is doing wonderfully right now, and his MRI does not show any tumor recurrence, we need to pause to consider this very weighted question and how it will shape Henry's future as well as that of our entire family.