Many pediatric cancer centers and non-profit agencies have recognized the need to care. Not only for their young patients, but their families too.
Hospitals are not only staffed with skilled pediatric oncologists and surgeons, but also with a team of psychologists, social workers, and child life specialists.
Renee Wyatt has been a child life specialist at EMMC the past eight years, working with dozens of patients and their families.
She remembers all of them; every diagnosis, every laugh, and every tear.
“I know their anniversaries, I know their relapse date, the death date, you know that scar kind of stays with you.”
A child life specialist is not a doctor, but a hand to squeeze during treatment, a coloring partner, comic relief or just someone who will listen.
“So finding out how they’re doing, how they’re coping at home, how school’s going. How can we kind of help them adapt to this new way of life.”
Child life specialists serve the patient first, but also the family, helping to navigate the emotionally and physically demanding process.
“A family wants you to be human too. Is it ok to cry? Absolutely.”
Coping mechanisms come in many forms.
“What is something that can make your kid happy? Is it Plato? Is it painting? Is it me spending time with them? Is it me playing a video game with them? A lot of times it looks like we’re playing, but we’re also doing a huge psych social support there.”
For young patients like Dylan, it means everything.
“Thank you yes, yes. And I would probably give her a hug.”
Families of young cancer patients face a myriad of challenges, from commuting to the hospital, to finding short term housing.
“We don’t live you know two minutes from the hospital. I spent all the nights that I stayed at the hospital in the little tiny cots.”
“When he had to have chemo and radiation for seven weeks, they stayed at the Ronald McDonald house because we live so far away.”
Organizations like the Ronald McDonald House in Bangor help families by offering them a home away from home while their child is undergoing treatment.
“We have families who travel from all over Maine and different states to get treatment here for their children, so they are able to stay the night here with us.”
Whitney Linscott is a house manager at the Ronald McDonald House.
“Most of the families that end up coming to us come to us on a fairly unplanned basis. They’re rushed to the hospital and come to us and have basically nothing, so being able to offer toiletries, food on an ongoing basis, home cooked meals, really helps them to not have to worry.”
Families can stay as long as their child is receiving treatment, and no family is ever turned away for not being able to pay.
Sometimes it’s the support of neighbors that really makes a difference.
“We live in a small town and they help us out, the cancer center helped us out they had a benefit supper for Dylan. Even when we are low and don’t say anything, somebody will slip you a gas card.”
But saying goodbye is something that no family is prepared for.
“We knew that it was just a matter of time. He sat bolt upright and looked at me and said I love you so that was his final words to me.”
That’s when the role of a child life specialist is so important.
“She sat with me many, many a night and just, you know, let me just talk and cry and anything you need to do at that point.”
“You know giving a little piece of you away each day to each family is really the best thing you can do.”