“A bond that never goes away”: CCF founders reflect on 25 years

Jacksonville, FL — It’s been two decades since Jan Saltmarsh and Laura Ferrante last saw each other, but reuniting in Jacksonville ahead of the 2019 Care-A-Thon meant picking up right where they left off.

“It’s just a bond that would never, is never gunna go away,” Laura says.

That bond was forged some 25 years ago, when Jan’s daughter Ellen and Laura’s daughter Kelsey were both being treated for leukemia. They were introduced by a nurse named Joni Lawler and doctor named Paul Pitel, who had a goal- paying the salary of the Child Life Specialist, a position that had just been cut from the hospital budget.

“I know it struck me like a ton of bricks. I just said, well what can I do,” Laura says.

Jan immediately rallied a foundation her family was familiar with, and was able to get a check.

“We walked in to Dr. Pitel and said ‘hire her back’, and they did,” she says.

FULL COVERAGE: WOKV Care-A-Thon benefiting the Child Cancer Fund

It was the start of a mission that became larger than either of them realized it would be at the time.

“I knew what a difference it was going to make in the children’s lives. Our children, as well as the other children. We became part of the cancer family. Not a family you really want to join, but it is definitely a family. And seeing what those children needed, to help them through this- namely a Child Life Specialist- was really what kicked us off,” Jan says.

The Child Life Specialist position helps bring a sense of normalcy for the children that are going through treatment, and can even help make those treatment sessions fun and exciting. Funding that position was crucial for Jan and Laura, but they wanted to make sure the families with children in treatment were being cared for as well.

It all drove them to start the Child Cancer Fund.

“As parents of kids with cancer, we knew firsthand what insurance pays for and what it doesn’t pay for, and there’s a lot it doesn’t pay for. So, we were trying to reach out to those families who either had insufficient insurance, or just special needs, to try and meet some of those needs that we knew were there. You send a child with cancer home and you don’t have a washing machine, how do you keep that environment safe for them, when you can’t even clean their clothes adequately? So, those are the kind of things we started funding, to help those families. Because we knew if they couldn’t come home, they had to stay in the hospital. The longer they stay in the hospital, the harder it is for them to live the new normal life,” Jan says.

Two families will forever be linked due to a childhood cancer diagnosis 25 years ago. As the 2019 Careathon approaches,...

Posted by News 104.5 WOKV on Friday, July 5, 2019

The focus early on was the Child Life Specialist position, but not only because of the impact the person in that position, Miss Joli, has on the children going through treatment, but her impact on the family as well. Jan’s other daughter Amy was only around 6-years-old when Ellen was being treated, and day-to-day life was not easy, especially because of how sensitive Ellen was to illness while living in the home.

“I had to go over and be kissed by this little boy, so that I would get the chicken pox, so that I could then see my sister again. And I remember, during this time, like I couldn’t be in the same house as my sister, so I would sit on the porch outside, and we would play school. So I would draw, and I would hold my drawing up to the window, and Ellen would, you know, like touch her hand up to the window, and we would communicate that way. It was just a whole different, you know. That’s the closest person to be in the whole world, and not being able to like physically interact with her was probably the hardest thing,” Amy says.

She’s not the only young child that struggles to understand what exactly is happening.

“There was a lot of guilt on my son’s part that didn’t really surface until later, as he got older. ‘Did I do this’, ‘Did I do something wrong’... and it hits you like a ton of bricks. Because you’re so focused on the child that’s sick, and there’s only so much emotional bandwidth that parents have during parts of this ordeal, that it’s really easy to... my son was the good one. He always did what he was supposed to do, and by the time he was five or six, I realized he was being affected as well, and it’s heartbreaking,” Laura says.

Miss Joli is there to try to bring some meaning to these young children, including providing therapy. She is equipped with specialized dolls that reflect some of the ailments and side effects the children are showing, and speaks with classes about how children going through treatment are not bad or contagious.

“Very basic sorts of things, but things kids need to be told and parents who haven’t dealt with this don’t always realize- what is my child thinking about, what is going on here,” Jan says.

The CCF mission continued to grow, to focus on the emotional health and well-being of the families.

“A child was terminal, and had not seen their grandparent for some time. And they didn’t have the money for the grandmother to come. And we bought a plane ticket. And that grandmother got to say goodbye to that child. Those are the things that stick with you,” Jan says.

CCF can provide off-duty nurses and caregivers to stay with children when parents need a break, and financial assistance for bills the family is struggling to pay. They send families going through treatment to Camp Boggy Creek, and offer tutoring services. Looking back from where they started 25 years ago, to now, is hard to explain.

“It’s, I think, one of the defining moments of my life. It’s one of the accomplishments that I feel really good about in my life, that I did something, and by acting, I changed the course of what is normal here in the Jacksonville area. I’m super proud of that, and just, how this community really has stepped up. This community has embraced us,” Laura says.

Her daughter Kelsey is now a software engineer in Boston, and her son Trevor is excited to get married later this year. Jan’s daughters are grown and doing well- Ellen works in marketing in Charlotte, and Amy owns a crossfit gym right in the Riverside area of Jacksonville. They feel fortunate that their families grew stronger together from this experience, instead of falling apart, and they hope that treatments in the future continue to move toward embracing the mental health and other care that’s needed to support families.

Most of all, they hope that another 25 years down the road, there will be a cure for cancer outright. But if not, the Child Cancer Fund will be here to continue helping.

When the mission started 25 years ago, “Child” wasn’t just about who the organization serves, it was a mission statement. Caring. Hoping. Involving. Loving. Doing. CHILD Cancer Fund.

Even if Jan and Laura go another 20 years after this before seeing each other again-

“You go through these kinds of experiences, and it’s a bond that never goes away,” Laura says.

-they know they’ll be able to pick right back up where they left off, with those shared experiences- and the continued shared CCF mission- always uniting them.

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