Jasper

Jasper was 8-months-old when an MRI revealed brain tumours. This followed an already complex medical history of an intra-ventricular hemorrhage as a newborn, an emergency craniectomy at 4-days-old, a hydrocephalus diagnosis, and his first six weeks of life spent at SickKids.

Jasper went through 22 months of chemotherapy - switching from one course of drugs to another, as the rarity of his cancer meant that there was no established treatment protocol. Each time we started a new kind of chemo, there was an anxious watch and wait period to find out if this would be the one that was effective and stopped the tumours from growing. Finally one drug combination worked.

Jasper's treatment finished eight years ago, but paediatric brain tumours have many side effects: Jasper has epilepsy, hydrocephalus, growth hormone deficiency, he has had strokes, and he has an intellectual disability.

Jasper’s diagnosis and continuing medical complexity have had profound effects on our family. While they have obviously caused us much stress, lost work, and restrictions to the life we had imagined before these diagnoses, we have also been granted a perspective on life that we could never had had without this experience. We value Jasper’s happiness above all else. We have realistic expectations for his future, and hope for happiness, acceptance, and good health. We never take for granted a developmental milestone reached, a clear follow-up scan, or another birthday to celebrate.

Jasper’s medical history is only one aspect of who he is, though. He is also a charismatic kid with a love for making people laugh, a kid who loves to perform his dance moves for anyone who will watch, and a kid who loves to tell stories about robots.