Our son Daniel, age 7, was diagnosed with Medulloblastoma in March 2016 at age 3, and is currently in remission. Traditional treatment for Medulloblastoma involves surgery to remove as much of the tumor as possible followed by full brain and spine radiation and then chemotherapy. We were advised that the likely impact of full brain radiation on such a young child would be significant cognitive impairment - a probable loss of 20-40 IQ points. In order to delay and minimize the use of radiation, we traveled 100 miles away from home to The Children’s Hospital Of Philadelphia in order to pursue a high dose chemotherapy and stem cell transplant regimen that resulted in 150 inpatient nights in hospitals over 8 months.
Daniel has undergone 2 brain surgeries – a craniotomy to remove the tumor (They got it all, but the tumor had been pressing against his skull for so long that the bone they removed was too thin to be usable and couldn’t be replaced.) and placement of a VP shunt, 8 surgeries to place and remove central lines, 18 brain and spine MRIs under general anesthesia, 2 Lumbar Punctures, stem cell harvest, 3 stem cell transplants, too many platelet and red blood cell transfusions to count, and 30 sessions of daily proton radiation to the original tumor bed under general anesthesia. Deciding to add radiation to his treatment plan was such a difficult choice because while we were told the treatment would increase survival odds significantly, there are no long term studies of the impact of proton therapy on such young kids because the treatment is relatively new.
Daniel was under post stem cell transplant isolation for 6 months and was not able to attend school for a total of 13 months after his initial diagnosis. He relied on an NG tube for his main source of nutrition for over 16 months and had to go back to Philadelphia for a 5 week full day feeding program in order to wean off of it. He lost the protection of all previous vaccinations and had to be completely re-immunized. It took over two years post-transplant for him to completely catch up on his vaccinations, and during that time we could not get our public school district to confirm whether or not they had separated him from other children whose parents had opted them out of theirs. Our biggest fear after the cancer coming back was that after all he had fought through just to survive, that we could still lose him to a vaccine preventable illness such as measles or chicken pox.
Daniel had to re-learn how to talk, walk and use his left hand after his initial surgery. He has high frequency hearing loss due to the outdated chemo meds that we were forced to use to save him. We traveled to a top tier research institution for his treatment, and the “newest” drug in his treatment protocol was developed in 1989. He continues to receive physical, occupational and speech therapy to this day. He will soon start seeing an endocrinologist that specializes in the endocrine late effects of cancer treatment. Prior to his cancer diagnosis, he was projected to grow to be about 6 feet tall, but today his height measures in the less than 1st percentile for his age group. This year he had to leave his community once again in order to attend an out-of-district private program in order to make meaningful academic progress at school.
We are so grateful that he is in remission, and now get to live our life in 6 month increments between scans. We simultaneously plan for what we hope to be a long future for him, while trying to enjoy life at breakneck speed to make up for lost time and make sure we can look back and say we gave him a happy life, no matter how long of one.