VILLAS – A Villas family is looking for the silver lining behind the dark and stormy cloud that is childhood cancer.
Kayleigh Laughlin and David Silver planned to take their son, Harry Silver, 5, for scans at the end of August to see if he is in remission or needs more treatment.
Harry was diagnosed with stage 2 rhabdomyosarcoma Oct. 27, 2022, Laughlin said.
She explained that a “sarcoma” is a bone cancer and rhabdomyosarcoma is a tumor that occurs in bone and soft tissues, and it’s rare.
“There are fewer than 200,000 cases per year in the U.S.,” Laughlin said.
They had taken Harry to Rainbow Pediatrics, and Dr. Christine O’Truba looked in Harry’s mouth several times and saw something that concerned her. Laughlin said the pediatrician told the parents to pack a bag and drive to the Dupont Children’s Hospital, which is now the Nemours Children’s Hospital in Wilmington, Delaware.
“She told us, ‘Don’t leave until they admit him,’” Laughlin said.
At Nemours, they found Harry had a tumor on the roof of his mouth going into the nasal sinus. His parents took him to several facilities seeking treatment, and Harry became an inpatient for six months.
Doctors inserted a “trach” – a tracheostomy tube – for Harry to breathe through. To have him come home, Harry’s parents had to take an eight-week class to be certified.
“The first few months were very hard – learning all the medical jargon, so we could keep up with doctors – that helped a lot. It’s easier to communicate if you can use medical terms,” Laughlin said.
Harry’s parents took him to several doctors over a series of weeks and, again, one of the hardest parts was to get someone to look at Harry’s condition and say what the next step would be, rather than pass it off to the next person.
Harry spent his fifth birthday at Children’s Hospital of Philadelphia (CHOP) undergoing radiation therapy. Laughlin said unofficially Harry’s final chemotherapy session (after completing radiation) was Aug. 9.
He went through 43 weeks of chemotherapy and had 28 sessions of proton radiation therapy. He was scheduled for two days of scanning at the end of August, when they would do a head scan, MRI, and CT scan to see if there was anything visible.
The family has an appointment in September to learn if Harry is in remission or needs more chemotherapy. If he’s in remission, the hospital will schedule surgery to remove the trach tube, G-tube (gastrostomy tube), and a port. If he’s not in remission, the treatments will need to continue.
Harry’s parents have been informed that Nemours is no longer taking Medicaid, but there were some exceptions that allow Harry to be covered until July 2024.
“After that, we will have to find another health provider,” Laughlin said.
Fortunately, to this point, the family has not received a bill for Harry’s treatment. However, the cost of traveling for treatments and taking off work to care for Harry has taken a financial toll on the family. With Harry needing round-the-clock attention, neither of his parents have been able to work full time.
Laughlin graduated from Atlantic Cape Community College with certification in medical billing and coding and landed a job as a medical receptionist for Cape Physicians Associates and began working at a doctor’s office in Stone Harbor. She had to stop working to care for Harry.
Harry’s father is an electrician, who works when Harry is feeling good, Laughlin said. Otherwise, he has to be available to drive Harry to treatment.
“We only have one vehicle, and we are behind on a lot of things… playing catch up. Our landlord is very understanding; this (landlord) is family,” Laughlin said.
Laughlin said the Nemours social workers were more than helpful and the state has helped with utilities. She said it is very humbling how the community has come together to support her son, which includes putting together a benefit for Harry.
“It’s brought me to tears and I’m so humbled by the community. Even local businesses have been sending stuff for the benefit,” she said.
In the meantime, the family tries to maintain a normal lifestyle. Harry has been registered for kindergarten but will only attend if his trach tube and other devices are removed. If not, he will attend school remotely to keep up with his class. Harry continues to enjoy video games, baseball, and “anything outside,” his mother said.
A benefit for Harry was scheduled for Sept. 3, from 1 to 5 p.m., at the Greater Cape May Elk’s Lodge 2839, 917 Bayshore Rd., Villas.
Contact the author, Christopher South, at csouth@cmcherald.com or 609-886-8600, ext. 128.
