Pediatric Brain Tumour Inspires Family to Help Others

As the parents of twin boys Quinlan and Conner, Jacqueline and Peter Huff were used to bumps and bruises and a life full of baseball and soccer. But the year the boys were seven, the typical childhood doctor’s visits took a dramatically different turn. After a series of emergency room visits because of varied symptoms, Quinlan was diagnosed with a brain tumour. That was in 2004 and today, Quinlan is a high school student at G. W. Graham Secondary School. Now the Huff family is committed to helping other families affected by brain tumours and one way they are generating this support is being a part of Brain Tumour Foundation of Canada’s 2011 Vancouver Spring Sprint on May 29.

It was Easter of 2004 when Quinlan first began exhibiting his symptoms. First a really high fever that would not go away brought the family to the doctor and it was explained as the flu. Jacqueline remembers, “He kept complaining about his stomach and we were going back and forth to the doctor. It was my neighbour who suggested how odd it was that no one else was getting sick.” Then over the summer holidays, Quinlan continued to be sick and started experiencing personality changes.

These symptoms were eventually diagnosed as simple partial seizures. Simple partial seizures are a very subjective experience and the symptoms vary greatly between people. Then during one emergency room hospital visit, Quinlan experienced a seizure and the on-call neurologist was summoned. Before long, an Astrocytoma brain tumour in the left temporal lobe was diagnosed. “My husband and I were shocked. It went from a stomach virus to a brain tumour,” recalls Jacqueline. Quinlan was also diagnosed with cortical dysplasia. Jacqueline sees the bright side, “If he hadn’t had the seizures, the tumour would have kept growing.”

In September 2004, Quinlan had surgery and 95%of the tumour was removed. Eight months later it was discovered that the tumour had spread to one of the ventricles, an inoperable part of the brain. Quinlan explains his treatment matter-of-factly, “First I had the surgery and then after the second one was found, I had 18 months of chemotherapy. Two years later, I had another surgery for seizures and I’ve been doing really well ever since.”

“We got the pediatric handbook from Brain Tumour Foundation of Canada when Quinlan was diagnosed,” explains Jacqueline “and I wish I had reached out for more help at that time, but you just go into survival mode.” In 2008 Jacqueline began directing her experience and energy to ensure other families dealing with a pediatric brain tumour have help. Together with other volunteers she was instrumental in starting the Lower Mainland BC branch of the organization’s BrainWAVE program. “It’s a really great support,” she says.

As for other families, Jacqueline suggests, “Don’t try and do it all by yourself. I think I would like to say to other families and parents that as hard as it is to reach out to strangers, please do it because there is so much support available through Brain Tumour Foundation of Canada. Try and reach out for support where you can. I met so many people who have become friends.”

While she’s grateful for the Brain Tumour Foundation of Canada, she also recognizes that the need is still great. “Research is woefully underfunded and pediatric brain cancer research needs to be focused on just as much as adult brain cancers. In addition to looking at the causes and cures, we also need to be researching the ‘late effects’ of treatment and their impacts on our children as they move forward in their lives,” she explains.

“We have been really fortunate to be so well supported by the Chilliwack school district but we hear from parents in other districts that this isn’t always the case.” Jacqueline is determined to help children affected by brain tumours not only to survive, but thrive as they return to school, hobbies, post-secondary education and eventually their careers.
 

Today life for the entire Huff family is returning to normal and Quinlan’s tumour in the ventricle is now stable. He is working hard at school and doing well. The house is filled everyday with the activity of teenage boys including things like skateboarding and music practice: Quinlan plays the trumpet and Conner plays the baritone horn and they enjoy playing the guitar together. Quinlan wears his hair long now but the scar is a conversation piece – it is a war wound and he won.