Traveling with any child can be a tough experience. Traveling with an autistic child to and from New York for cancer treatments on a weekly basis can be extremely difficult, to say the least.
That's the situation Melanie Miller found herself in just under a year ago after her daughter Emily's neuroblastoma returned for hopefully the last time.
Following Emily's original diagnosis in July 2012, she went though 16 months of treatment at Levine Children's Hospital in Charlotte. The cancer — originally a widespread disease ranging from Emily's skull to her kneecaps — went into remission. It stayed that way for about 18 months before suddenly returning. The cancer returned so rapidly that it filled her entire sinus cavity before breaking through the back of her mouth, shifting her teeth. She returned to Levine for a month's worth of daily radiation followed by more chemotherapy.
"When you relapse there is no protocol," Miller says. "The first cycle, the first year and a half of treatment, that was all very well-established protocol. The second time around you have to kind of just look at it, see what's out there — which is not much — and throw the kitchen sink at it."
The family became desperate not to experience another relapse. They began looking for new preventative measures that aren't available in Charlotte. They attended consultations in Atlanta and Philadelphia before deciding to undergo a new clinical trial called a "vaccine trial" at Sloan Kettering Memorial in New York City, where Melanie's now-friend Erin Santos sought treatment for her daughter Isabella years ago. They've been flying to and from New York on a regular basis since last November.
"It's very disruptive. We have a new baby; he's 1. So we started traveling within two months of his birth and have been ever since," Miller says. "We would love if they could have more stuff for her here right now. But with the way a relapse is, there's so little."
- Laura Stikeleather
- Melanie Miller and her daughter, Emily, in fall 2014.
It's not that Charlotte is dragging behind other cities in its efforts to treat pediatric cancer; Levine Children's Hospital has offered great treatment to child cancer patients for 10 years. Compared to institutions like Memorial Sloan Kettering and the Children's Hospital of Pennsylvania in Philadelphia, each of which have operated for more than a century, Levine is just getting started.
"Certainly our goal is to look at the Santos family and the Miller family and say, 'You do not have to go to Philadelphia or New York. Everything you can get is right here,'" said Mark Griffith, director of funding at Carolinas Healthcare Foundation.
"We aspire to have a reputation like Philadelphia and Sloan Kettering, so that people do not want to leave," he says. "I think when you look at the actual care, there's not a lot of difference between the level of care you get at those hospitals and Charlotte. What differentiates those hospitals from Levine Children's Hospital is research and reputation. We're just starting that research part and, being 10 years old, the reputation will come."
With the help of the Carolinas Kids Cancer Research Coalition (CKCRC), a group of 12 nonprofit organizations that funds clinical pediatric cancer research, Levine is growing closer to becoming a powerhouse in the fight against pediatric cancer.
Within the last two years, the practice in the pediatric cancer ward at Levine has grown from two to 10 doctors. Sometime in the next year, crews will break ground on a new pediatric cancer research facility and within a few years, Levine will be able to hire its own scientist to carry out clinical research on the hospital's campus. Griffith said it's too early for him to discuss details about the lab, but it's clear he believes it will change the way Levine operates.
"I think once we open up this lab in the next year and we start doing our own research in the next couple of years and continue our partnership with the ever-expanding Levine Cancer Institute ... you'll see the program continue to grow leaps and bounds," he says.
For Griffith, the work being done by Levine's staff can't be understated, but it's the work being done by the Isabella Santos Foundation and others with the CKCRC that will allow Levine to take that next step in helping families throughout the southeast.
"The difference between a good hospitalization — regardless of outcome — the difference between a good experience and an excellent experience are people like Erin Santos, it's the community," he says. "It's people that come in and fundraise and elevate a program — whether it's research or capital or equipment they're helping to buy. It's people that come in to do arts & crafts or read books with the kids. Most hospitals would agree; we have great doctors and great nurses, but it's that extra love and that extra added touch that the community brings that makes families' experiences excellent."