Daniel loves elevator rides, playgrounds, waterslides, Cars, Blaze and the Monster Machines, Tsum Tsum cars and anything on an ipad.
In March of 2016, Daniel’s balance started to degrade. A few weeks later he started vomiting but wasn’t sick. Our pediatrician referred us to a neurologist who scheduled an MRI. It was then that we discovered he had Medulloblastoma.
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.
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.
During Daniel’s treatment, our family spent much time apart as most of his treatment was inpatient and he was treated at CHOP, 100 miles away from our home. Post treatment, he had to return to Philadelphia for radiation (7 weeks) and an intensive feeding program (5 weeks) – both times we had to live in Philadelphia, away from his brother, during his outpatient treatment.
Hope session by Cindy Robbins Photography | Facebook