YourStories-Larissa

Remembering Larissa

YourStories-Larissa“Having the freedom to celebrate your child in a safe community without worrying about upsetting other parents whose children are still fighting cancer is a gift. Bereaved parents are their worst nightmare, we’re the Bad News Bearers and our journeys are so different. Theirs is one of hope and ours is one of remembering. Having a space where we could truly honour Larissa was so healing.”—Marggie Marks on Bereaved Family Camp

The Marks family and 13 other families found healing and comfort at Kids Cancer Care’s  Camp Kindle last year during their 2014 Bereaved Family Camp. The first of its kind in Alberta, Bereaved Family Camp has since become an annual weekend gathering.

Although many of bereaved families attend Family Camp and their children attend summer camp, Bereaved Family Camp offers something especially meaningful for families on a very different journey.

“The best thing we can do for families who have lost a child is to connect them with a supportive community that understands their experience better than anyone,” says Kelly Kerr of Kids Cancer Care. “This Family Camp is one weekend in an entire year, where they don’t have to explain anything or edit themselves. We set up camp so each individual and each family can get what they need from the weekend. They can grieve, they can remember, they can share stories, they can find support from each other or spend quiet time alone. They can still laugh and have fun, they can hope for good things to come. We want them to know that they are still part of this community, there is still a place for them.”

Tim’s and Marggie’s daughter Larissa was only nine months old when she was diagnosed with glioblastoma, an aggressive brain cancer rarely found in children that is usually terminal. After a lengthy brain surgery, Larissa fell into a coma and eventually passed away just weeks before her first birthday. Although Tim and Marggie would give anything to have their little girl back, they are grateful she did not suffer long.

“The grief never ends,” says Larissa’s mother Marggie, “but you do come to terms with it eventually. It took five years to finally feel more stable. Danica was my reason for coping. You can’t shut yourself away in your bedroom and cry forever when you have a two-year-old who needs you. Danica gave me my reason for living. She gave me my life.”

Keeping the memory of Larissa alive is important to Tim and Marggie. “One of the reasons we connected with Kids Cancer Care is because we wanted our children to remember their sister, to really understand and to cope. These camps have helped them to grow and to become more compassionate people.”

Over the weekend, families enjoyed the thrill of the challenge course, nature hikes, reflective art projects and making bannock over a campfire.

The weekend also marked the opening of the Reflection Garden with a First Nation’s drumming circle. “We loved the Reflection Garden and the drumming circle,” said Marggie. “For me, it was deeply moving to hear the Elder compare our journey to that of God and his son, Christ. I had never thought of it in that way and it gave me peace. How gracious and generous it was for a spiritual leader from another faith to make those connections—in a way that would be meaningful to us.”

YourStories-Luca

Luca’s Light

YourStories-LucaAs a toddler, Luca was already showing signs of exceptional intelligence. He started talking early and quickly acquired a massive vocabulary. Luca’s doctor was sure he was gifted, a prospect that totally floored his mother, “He’s only eight months old, how can you possibly know that?”

While other kids were goofing around outdoors, two-year-old Luca spent hours at the computer, exploring sites on volcanoes. When, as a four-year-old, he started talking about going to university, Luca’s mother Amber knew something was up. “He doesn’t care about sports. He doesn’t care about anything, but science. That’s all he wants to do,” she says. So Amber and her husband Ernie enrolled Luca in a school for gifted children.

Just as they were getting used to the idea of sending Luca to a gifted school, everything changed. After months of unexplained headaches and nausea, Luca was diagnosed with a brain tumour that required an intense treatment regimen.

“It’s horrifying what brain cancer patients go through,” says Amber. After an eight-hour surgery that didn’t go well, “Luca spent the next week in intensive care in a kind of pain I didn’t even know existed,” says Amber. He later underwent three stem cell transplants that required several rounds of high-dose chemotherapy. “He threw up all day, every day, for seven months.”

What’s more, Luca would soon relapse and have to go through it all over again.

“His three-month scan was perfect,” says Amber. “His six-month scan, not a spot. His nine-month scan, two tumours. So we started again, from the very beginning.”

Amber assumed they would abandon their plans for a gifted school after Luca’s first round with cancer. But he wanted it so badly, “I really want this mommy,” he told her. So Amber and Ernie decided to stick with the original plan.

But learning is now difficult for Luca and he is struggling at school. After the surgery, the high dose chemo and radiation, Luca is no longer the same child. “He’s changed so much because of what the treatment has done to his brain,” says Amber. “He’s so little and he’s completely heartbroken.” Mom and Dad are now doing everything in their power to access funding to hire a teaching aid for him. It has not been easy.

As surprising as it may seem, Luca’s cancer journey has only just begun. Aside from a myriad of physical health problems, the neurocognitive fallout of childhood cancer treatments can be devastating, including problems with learning, memory, judgment, reasoning and processing. Not surprisingly, then, certain groups of childhood cancer survivors are at high risk for psychological distress, lower levels of education, poorer employment outcomes and poor health-related quality of life.

Kids Cancer Care’s educational support program first originated with children like Luca in mind. Thanks to generous support from the community, Kids Cancer Care is building an education support program to help kids during their primary and secondary school years, ensuring they have access to the resources they need to succeed today and tomorrow.