Mile #26 Daniel
Hi Tom. This is my son Daniel, age 5. Daniel 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 to CHOP in order to pursue a high dose chemotherapy regimen that resulted in 150 inpatient nights in the hospital 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, 12 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 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 must be completely re-immunized.
Daniel had to re-learn how to talk, walk and use his left hand after his initial surgery. He continues to receive physical, occupational and speech therapy to this day. We are so grateful that he is in remission, and we are learning to live our life in 4 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. This year he will start Kindergarten, he learned how to ride an adaptive tricycle, he loves going to “Ninja Warrior Training”, he’s going to take adaptive horseback riding lessons, and we hope to put him in a special needs hockey program.
Thank you for all you do in raising awareness for our kids and fighting to get the funds they deserve for better and less toxic treatments. We would be honored if you would carry Daniel with you again, and hope that we get to meet you one day.
Glen Ridge, NJ