Sick children getting care they can count on

Former president Harry Truman once said "a nation is only as healthy as its children." So, where do you turn and what do you do when your child is seriously sick?

When 18-month-old Bobby became sick with cancer, his parents turned to Transitions LifeCare in Raleigh to provide care and support. Struggling with the effects of his chemotherapy, Bobby exhibited symptoms of nausea, was unable to keep any food down and was losing a lot of weight.

"Bobby was referred to us for palliative care," said Lily Gillmor, an RN and the director of Transitions Kids at Transitions LifeCare. Palliative care is an interdisciplinary approach to specialized medical and nursing care for people with serious illnesses that provides relief and support. "His physician asked us for help on behalf of the family. So we got Bobby home and realized that the only food that he could tolerate without getting sick was something that his family couldn't afford."

Thanks to the Transitions team, Bobby was able to get the food he needed to sustain him while undergoing his remaining chemotherapy.

Transitions Kids launched in 2015 and offers different levels of care designed solely around the particular needs of children with life-limiting illnesses. A nonprofit, it offers care regardless of a family's ability to pay. The program was formed in response to the growing hospice and palliative care needs that are unique to children.

As Transitions LifeCare CEO John Thoma put it, kids are not just "little adults."

"The goal is to provide home-based supportive care services for the child and family that is focused on enhancing quality-of-life by reducing physical and emotional pain and distress," states TransitionsLifeCare.org.

The care team, which may include a physician and a nurse, a family support counselor, a spiritual care counselor, a grief counselor and volunteers, works to "embrace the child and family in a circle of care." This can include things like visiting the child and family at home or in the hospital, explaining unfamiliar care regimens to parents, helping families navigate the complex healthcare system, working to relieve pain and procuring additional resources.

Dr. Laura Patel, chief medical officer at Transitions LifeCare, pointed out that their team also serves as a resource for hospital teams and that they work hand-in-hand.

"What's interesting is that, when our organization was originally founded as Hospice of Wake County in 1979, our very first patient was a child with leukemia. This was, I think from the very beginning, part of the mission to serve everybody who had a need, and that included children," she explained.

Gillmor said if a family has a shortened amount of time with their child, it's their job to make that time as good as possible and "kind of fit a lifetime into what you've been given."

"Their needs are different, their care is different, their illnesses are different, their medications are different — virtually everything is different. Thus everything — services offered, types of staff, required competencies, even the electronic medical records system — had to be created from scratch or, at the very least, heavily adapted," explained Gillmor.

When seriously ill children like Bobby get care they can count on, it can make such a difference in the patient's life and the lives of their family members.

"A lot of our families have been living with a child who has had a serious illness for a lot of their life, and at some point something changes. Perhaps it's a hospitalization, or there's something that a physician notices; maybe the child is not getting back to baseline or families just need more support," Gillmor said.

After working with Transitions for a couple of years in combination with his routine medical treatment, Bobby's cancer went into remission. While Bobby's story isn't an archetype for every patient case, it does serve as a testament to the power of hospice and palliative care specifically catered towards children.

"It's really important for families to know that we're not just here because your kid may be dying; we're here because your kid is sick and we recognize that extra support would be really helpful for you," Gillmor said. "We have lots of kids that we discharge off service because they don't need our support anymore."

Although Gillmor's job is no doubt challenging, she also calls it refreshing and rewarding.

"I choose to do this work because it needs to be done, and whether people are doing it or not, kids are sick and kids are dying," she said. "I think people have visions of such horrible things happening when kids are sick, but we also get to see the amazing — the love. These families need people to just come in and say, 'Wow, I see you, I hear you and we can help you.'