May 30, 2019 Latest post:
Apr 24, 2022
On May 22, 2019, we brought our son Eli into ER at SickKids hospital in Toronto because of an unexplained limp in his left leg. A day later he was diagnosed with a rare brain tumour called a craniopharyngioma. He had just turned 3. He underwent a 9 hour surgery on May 24, 2019. They removed 95% of the tumour but the surgery and the damage tumour did left him with four life altering conditions: hyperphagia (constant hunger), diabetes insipidus (- a life threatening condition if unmedicated - caused by a damaged pituitary gland that no longer makes the antidiuretic hormone), adrenal insufficiency which is also a life threatening condition and panhypopituitarism which means his pituitary gland no longer functions. After spending 6 weeks in the hospital and 8 weeks in rehab Eli finally came home. Three weeks later, at a follow up MRI, we discovered his tumour had regrown. Our only option was brain radiation—generally the younger the patient is the worse radiation is for their brain. We were devastated. We applied for access to proton radiation which is slightly less damaging. We don’t have it in Canada so we were fortunate that our application was approved to go to the USA. We went to Boston at MGH for proton radiation. Our caringbridge site is the story of our journey with Eli from diagnosis to treatment to learning to live with our new normal. Thank you for your prayers, positive thoughts and words of support.