TALLMADGE — If it’s too hot, he can’t breathe. If it’s too cold, he can’t catch his breath.
Imagine being 12 years old and longing to spend your summer outside but being literally breathless, bound to an oxygen tank, as your lungs fail. Mark Frick simply wants to be able to do the things that other kids do. “I want to be able to keep up,” he says.
Family and friends of the red-haired middle schooler are praying the third time will be the charm when the transplant team summons them to Pittsburgh for a double-lung transplant. The son of Terrace Teter and Wayne Frick, Mark was placed on the active transplant list in May 2016. He's a happy child, according to his mom, despite his medical problems, which started at a young age.
In the spring of 2007, Mark, then 15 months, was diagnosed with Acute Myeloid Leukemia. He underwent a successful bone marrow transplant with his older sister, Brittani, serving as his donor; however, shortly afterward, Mark developed breathing issues. He was diagnosed with Obliterative Bronchiolitis, a side effect of the chemotherapy he'd received, according to his mom. Now the doctors at Children's Hospital of Pittsburgh in Pennsylvania, are recommending a double-lung transplant.
Mark’s name is on both the children's and adult waiting lists. As he gets older, his lungs are working harder to sustain his growing body. Presently, Terrace says Mark spends twice as long recuperating from an activity than doing it. "It's like an 80-year-old person who has COPD (Chronic Obstructive Pulmonary Disease)," she explains. "They can only walk so far before they're out of breath. Except it's your child."
Mark remains ”very positive,” according to his mom but he wants to go swimming and ride a bike without worrying about managing his oxygen cord. “Now that he’s getting a little older, the realization of a lot of things is starting to hit him, especially when he goes to bed at night,” his mom says. “His mind starts wandering and he starts asking me tough questions and I try to reassure him.”
Mark undergoes both physical therapy and massage therapy for the pain he suffers from steroid use and weak ankles. “He can get up and move,” his mom says, “but obviously it’s in very short bursts because he can’t catch his breath.” Mark is going to be fitted for braces to help strengthen his ankles. “That way, when he gets his new lungs, hopefully he’ll be able to run around and get moving,” according to Terrace.
To keep Mark as healthy as possible as he awaits the transplant call, he uses a laptop computer for schooling and receives home tutoring. “There’s so many viruses and any respiratory virus can potentially put him in the hospital or keep him from getting the transplant,” his mom says. The laptop is a godsend, his mom says, since he’s been unable to attend school for several years now.
With transplant-related expenses expected to exceed $50,000, Mark's family has turned to the Children's Organ Transplant Association (COTA), a national charity based in Bloomington, Indiana, for help. At press time, $18,400 had been collected for Mark, according to Kim Carter Parker, director of communications for COTA. Mark's recovery is expected to last from three to six months after the transplant surgery. Following the operation, he would be on drugs for the rest of his life to prevent his body from rejecting the new lungs. He also would be at a higher risk of infection.
In September 2016, the family was summoned to Pittsburgh, with doctors saying they thought they had a match for Mark. But after Mark was intubated and sedated for the 10-to-12 hour operation, surgeons found the donor lungs were damaged and not suitable for transplant. Last summer, a second call came and Mark was prepped for surgery; however, the doctors who had flown to Tennessee to inspect and transport the lungs back to Pittsburgh determined they, too, were less than optimal, due to trauma or disease.
“I always say Mark is the exception to the rule,” Terrace says, so she reports her son has not been discouraged by the turn of events. “Hopefully, the next time we get a call it’ll be all a-go and the lungs will be the right fit for him,” she adds,” and he’ll learned what it is to breathe effortlessly and to run.”
The Tallmadge community will have the opportunity to rally around Mark at “Ice Cream For Lungs,” a fundraiser scheduled for Sunday, June 10 at Lions Park, Pavilion #2, 175 E. Garwood, in Tallmadge from 1 to 4 p.m. His mom says his family takes comfort in knowing they are not alone.
Reporter Ellin Walsh can be reached at 330-541-9419, firstname.lastname@example.org or @EllinWalsh_RPC.