Nursery school presents special challenge for toddler with neuroblastoma

Nexicom James Fund Golf Classic on June 1 will raise funds for Jake and his family to attend fall retreat

Diagnosed with neuroblastoma when he was an infant, Jake Ward received a battery of radiation and chemo treatments over the next year that wiped out his immune system, leaving him vulnerable to infection. After he started nursery school last fall at the age of two, Jake spent two weeks in the hospital when he was exposed to chicken pox, a potentially fatal disease for children with compromised immune systems.
Diagnosed with neuroblastoma when he was an infant, Jake Ward received a battery of radiation and chemo treatments over the next year that wiped out his immune system, leaving him vulnerable to infection. After he started nursery school last fall at the age of two, Jake spent two weeks in the hospital when he was exposed to chicken pox, a potentially fatal disease for children with compromised immune systems.

Jake Ward started nursery school back in September and his first few months weren’t what most people would call typical.

Sure, there was the initial apprehension that comes between a toddler and his parents at the thought of parting for the day, and then there were the natural connections that evolved as he began to mingle with the other kids and the ladies who cared for the children. All of this was normal enough.

The real challenge came through exposure to the countless germs and infections that breed and spread in a room filled with little runny noses.

When Jake was barely more than six months old, he was diagnosed with neuroblastoma — a rare type of nerve cancer that almost always affects infants and young children (it’s actually the most common type of cancer in infants).

The battery of treatments that followed meant Jake couldn’t be immunized against typical childhood illnesses like most children.

His mother, Candice, recalls spending nearly two weeks with Jake at SickKids hospital in Toronto after he was exposed to chicken pox at nursery school. That risk seems somewhat worth it, to hear Candice tell it, for he absolutely thrives in that environment — he’s a natural around other people.

“I know I’m a little biased, but it’s just his personality,” Candice says. “He just seems to connect with everyone, not even through words but just through facial expressions.”

When Jake began nursery school, he didn’t talk at the same level as most kids his age — another complication of his treatments — but in the seven months since, he’s caught right up.

In many ways, Jake’s story typifies many of the challenges children and families face when neuroblastoma enters their lives. There is the immediate need to tackle the deadly threat it poses, for it’s a relentless disease that kills children every day.

There’s the constant worry that latches onto the treatments and the threat of other illness that can beat down an already-weakened immune system. Then there’s the fact that these kids need to be kids with room to develop and grow, despite the realities of neuroblastoma.

For Jake, nursery school presents just one of those opportunities to be like any other kid. The annual James Fund Family Retreat, being held this fall at Camp George outside of Parry Sound, is another opportunity that Candice says she and her husband, Steve, are looking forward to. They weren’t able to attend last year’s retreat due to the chicken pox exposure, but this year they’ll be there.

They have a deep well of support from friends and family, Candice is quick to point out, and they’ve spent some time with other parents whose children are living with cancer through Ontario Parents Advocating for Children with Cancer (OPACC), but at times they still feel alone.

Because of his exposure to chicken pox, Jake and his parents Candice and Steve couldn't attend last year's James Fund Family Retreat for families living with neuroblastoma. They plan to attend this year's retreat in Parry Sound, which is funded by the annual Nexicom James Fund Golf Classic taking place on June 1 in Peterborough.
Because of his exposure to chicken pox, Jake and his parents Candice and Steve couldn’t attend last year’s James Fund Family Retreat for families living with neuroblastoma. They plan to attend this year’s retreat in Parry Sound, which is funded by the annual Nexicom James Fund Golf Classic taking place on June 1 in Peterborough.
“It’s hard because there aren’t many people who have neuroblastoma,” Candice says. “With leukemia, you can connect to a certain degree because it’s cancer, but it’s not the same as neuroblastoma.”

The opportunity to connect with other families who truly understand their situation at the Family Retreat — while Jake enjoys all the camp has to offer alongside the other children — fills the family with anticipation.

Participating in the annual James Fund 5K Walk/Run last fall in Peterborough was a breakthrough for her family, Candice says, because they met other families there and they’ve done so since with another neuroblastoma-focused event in Vaughn this past winter.

“The James Fund has been our primary source for emotional support because you get there and everyone knows what you’ve been through,” Candice says.

There’s a certain power and strength to be found in sharing the emotions and experiences with someone who has walked the same path.

This is exactly what the Family Retreat, funded for the past seven years through proceeds from the annual Nexicom James Fund Golf Classic in Peterborough, is all about. Families connect with each other while the world’s leading neuroblastoma researchers provide the latest information in the battle against the disease. And all the while, kids like Jake relate with each other and develop bonds that only they can truly understand.

In mid-April, Jake celebrated his third birthday and he continues to respond well to treatments. As Candice says, “he’s living the three-year-old dream.”

The Ward family continues to face each day with a positive outlook. Yet with neuroblastoma, there’s always worry and fear.

Providing a place for families to support each other as they face the uncertain future is the reason the Kawartha Golf and Country Club in Peterborough will be full on June 1 for the 8th annual Nexicom James Fund Golf Classic.

Visit this page to learn more and find out how to register for golf, sponsor a hole, or donate a prize to the silent auction table.

All photos by Nick Kozak, www.nickkozak.com

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