“Kids with cancer tend to be overlooked in the school system, as people assume that once treatment is over and the cancer is in remission, everything sets back to normal. They fail to appreciate that learning issues may present after treatment, and the child is a changed person in so many ways.”
Sandra Cicman, Education Specialist, Kids Cancer Care
When a child has cancer, the entire family is thrust into an unfamiliar world of harsh medical procedures, complex terminology, and overwhelming fear. Sometimes, the greatest challenge is convincing others that it isn’t over when the treatments stop. Just as a new normal emerges, parents must find their footing again as they navigate their child’s cancer-related health issues and educational needs.
Thankfully, with your help, Kids Cancer Care can be a partner to families, coaching and empowering parents as they become strong advocates for their child’s educational needs.
Brenden Deboer was only two when he started experiencing persistent headaches and vomiting. Most days, he cried in pain and couldn’t eat a thing. “We saw a lot of doctors,” says his mother Rheanna Deboer. “It was hard to convince doctors to take us seriously.”
Brenden was an infant when he was diagnosed with a brain tumour.
After two months of medical appointments, Brenden’s parents Jeff and Rheanna Deboer made the two-and-a-half-hour drive to the Alberta Children’s Hospital, where he received a CT scan.
“I knew it was a brain tumour before they even came out,” says Rheanna. “The build-up of fluid was so bad it was blocking a ventricle, which was causing pain and pressure in his head.”
The CT scan confirmed their worst fears. Brenden had posterior fossa ependymoma, a rare and aggressive brain tumour in the lower back part of the brain. He underwent brain surgery the next day. Within months of surgery, the Deboer family flew to Jacksonville, Florida, where Brenden received 30 rounds of proton radiation.
It took Brenden three years to fully recover. “He was afraid of everything,” says Rheanna. “He couldn’t be near people. He was very thin and wouldn’t eat anything. Dustin, our middle child, was the only one who could get him to eat.”
For years, after treatment, Brenden required regular monitoring and follow-up in Calgary. This involved regular MRIs, but Brenden didn’t respond well to sedation. “He totally freaked out,” says Rheanna. That’s when Jeff built a mini-MRI for Brenden to practice in. Practicing helped familiarize Brenden with the MRI experience without sedation.
Early in their cancer journey, the Deboer family connected with Kids Cancer Care, enjoying Family Camp, summer camp and special events such as the Polar Express.
Today, Brenden is a healthy, active 10-year-old in grade five. He’s very outgoing and very social. Like his older sister Emily, he’s a talented hockey player. But his sunny disposition was inadvertently masking a serious learning issue.
“Brenden had learning challenges right from kindergarten,” says Rheanna. “But the school wouldn’t listen, because he’s so friendly and socially skilled. He seems so ‘normal.’”
That’s when Kids Cancer Care stepped up to help again. With your support, our education specialist Sandra Cicman was able to work with Rheanna to advocate for her son.
“The education and health care systems can be complex, and they each have their own language, policies, and procedures, which can be intimidating,” says Sandra, a former teacher. “Parents don’t always know what their rights and responsibilities are. Some teachers don’t even know what resources are available. Rheanna picked things up so quickly. She always extended grace and encouragement to people working with her son, and she’s become a skilled advocate.”
Sandra met with Rheanna and Brenden’s teacher. She joined Zoom calls with the school principal and teacher. Together, they advocated for an effective IPP, a second neuro-psych assessment, testing accommodations, occupational therapy (to help with letter formation, typing skills, fine motor skills) and speech and language services (to help with word finding, vocabulary, speech articulation).
“We didn’t get everything we wanted,” admits Rheanna. “But we opened up the lines of communication and they’re listening.”
The second neuro-psych assessment was critical. It provided the evidence and information they needed to advocate, develop learning strategies and find the right resources for Brenden. Two evenings a week, Brenden meets with a teacher who specializes in the Orton-Gillingham Approach. This multi-sensory, structured literacy method engages the learner through the senses, i.e., writing in sand, to help them understand the connection between letters, sounds and words.
Thanks to you, Kids Cancer Care was also able to match Brenden with a tutor Pyper McGregor, who lives only 15 minutes from the Deboer farm in Southern Alberta. Pyper’s tutoring sessions complement and support Brenden’s work with the Orton-Gillingham group and school.
“Pyper has been a major blessing,” says Rheanna. “Everyone loves her! But there’s a special bond between Brenden and Pyper. He just cuddles right up to her to read. She’s helped him to read and write.”
The tutoring sessions are not only about academics. Pyper is also helping Brenden to build confidence and a love of learning. Most importantly, she’s helping him develop a growth mindset, which will serve him well in the future.
“Without Kids Cancer Care, we wouldn’t be where we are today,” says Rheanna. “Kids Cancer Care was there for us right from the beginning, and now, eight years later, they’re helping us again, to advocate and problem-solve.”
Brenden’s Photo Gallery
