Seven-year-old Zeke is a happy, outgoing, and friendly child who brings joy to those around him. He has also faced more health challenges than most people will encounter in a lifetime.
“Zeke is one of the friendliest kids you'll ever meet,” says Christa, Zeke’s mom. “He's cute, and he knows it so he can get away with stuff,” she adds with a smile.
Zeke has neurofibromatosis type 1 (NF1)—a genetic condition in which tumours (mostly non-cancerous) can grow on the skin, nerves, and bones. It can cause neurological and skeletal symptoms, as well as changes in vision and appearance, and breathing difficulties.
When Zeke was four years old, his condition started to cause unpleasant and concerning symptoms, such as nausea, vomiting, and spells of unresponsiveness. To find out why his health changed so suddenly, Zeke underwent an MRI at the IWK.
The MRI results showed that he had developed a brain tumour, as well as hydrocephalus (a buildup of cerebrospinal fluid within the brain). Within days, he needed to undergo emergency surgery at the IWK to remove as much of the tumour as possible and the excess fluid.
Sadly, a biopsy of the tumour determined the tumour was cancerous, and he needed to undergo chemotherapy treatments over a course of 14 months. During this time, Zeke suffered difficult bouts of fatigue and developed leg weakness, preventing him from riding his bike, running and jumping like kids his age love to do.
Devastatingly, a follow-up MRI three months after finishing his chemotherapy treatments showed his brain tumour had grown. Naturally, Christa and Zeke’s dad, Patrick, were devastated.
“When we got the news his tumour had grown, it shocked us to the core,” shared Christa. “No one wants to think about it coming back or getting worse, but we were lucky to have the support system we had, both at home and within the IWK.” Zeke was put on a new medication to see if it would shrink the tumour. Unfortunately, the new medication was unsuccessful, and he was put back on chemotherapy treatments.
Zeke has become accustomed to the frequent medical procedures and hospital visits. “It’s all he knows,” says Christa. “So, for him, it’s normal.”
Because Zeke is living with a lifelong condition and a brain tumour that can’t be completely removed, his future is uncertain. But Christa and Patrick remain focused on being there for Zeke, who’s their entire world, and supporting him every step of the way.
“We want to give him the best life possible,” says Christa. “We want him to be happy and healthy and give him a normal life as much as we can.”
Christa and Patrick are grateful for the specialized and family-centred care they receive at the IWK. “We only go to the IWK every three to six months, but they always remember Zeke’s likes and dislikes,” says Christa. “He feels very special when he goes there. The way they treat kids like Zeke is fantastic.”
