Thomas’ story: Overcoming Kawasaki, a rare pediatric heart disease

Thomas after his second round of treatment for Kawasaki

It took three trips to the doctor’s office and consults with four different providers for Valerie Flynn to finally get to the bottom of her son’s suffering.

Thomas’s confluence of symptoms was puzzling: a high fever that wouldn’t go away for five days, all-over itchiness with a head-to-toe rash; bloodshot eyes and absolute exhaustion.

“Thomas’ doctors kept telling me it must be a virus and to give him Benadryl for the itch and Tylenol for the fever, but those did nothing to help,” says Valerie. “That’s very scary as a mom, to see all these professionals stumped. I was that crazy mom who brought him back three times and called multiple times a day. I knew something was seriously wrong and just wanted them to figure it out and help him. I knew something was seriously wrong and just wanted [Thomas’ doctors] to figure it out and help him.”

Five days after his first office visit, Thomas, 5, was diagnosed with Kawasaki disease, a rare and serious illness characterized by inflammation of the blood vessels. Kawasaki affects many different areas of the body: hands, feet, whites of the eyes, mouth, lips, throat, lymph nodes and skin. Without quick treatment, Kawasaki can damage the heart’s coronary arteries.

Thomas’ pediatrician recommended his family seek care at Boston Children’s Hospital and immediately referred them, sending the family straight to the emergency room.

“I thought we’d come in to a mound of paperwork and it would take hours to be seen,” says Valerie, “but it all happened so quickly because our doctor had called ahead. I was glad the doctors took Thomas’ case so seriously and got right to work to help him get better.”

Before Kawasaki
Before Kawasaki

Kawasaki treatment

Thomas was admitted that night and the family met Dr. Jane Newburger, director of the Kawasaki Disease Program. Newburger  started him on a treatment of intravenous immunoglobulin (IVIG), a blood product injected through the veins. He didn’t respond to the first round, so it was tried again. But his coronary arteries kept getting bigger.

Over the next few months, Thomas was admitted five more times, and the family stayed at the hospital a total of 22 nights. Thomas’ cardiologists and rheumatologists treated him with ever more powerful medicines to calm the inflammation weakening his coronary arteries.

Eventually, Thomas started to recover on a new medical regimen that included cytoxan, a chemotherapy drug. His coronary arteries stopped enlarging, started healing and began to decrease in size.

Thomas went home with twice-daily steroid injections. He continued with weekly follow-up appointments at the Heart Center for echocardiograms, EKGs and blood draws.

“It was a very tough thing for all of us,” Valerie explains. “It’s been heartbreaking to watch him go through everything this disease has caused and to try and be strong for him. He is such a brave little boy.”

A heartfelt wish for fellow patients

When the family was first admitted overnight, Thomas was on precaution status, which meant he couldn’t leave his room for anything — not even the playroom down the hall. When he could finally go out, the playroom was his favorite place.  He wondered why some of the toys were missing parts, and Valerie explained to him that there are a lot of sick kids playing with the toys, and the hospital only has so many for everyone to share.

Thomas asked the next child life specialist he saw if he could donate his toys he doesn’t play with any more. The woman was touched, but explained the hospital can’t accept used toys for safety reasons.

Undeterred, Thomas decided he’d collect new toys from family and friends and donate them to the hospital. When he started asking friends and family who lived far away, Valerie set up a “Go Fund Me” page for the cause. So far, it’s raised $3,235.

Home and hopeful

We all look forward to seeing Thomas’ smile when he comes for clinic visits. He remembers all of the names of his caregivers and lights up the room with his wonderful energy!”

Thomas visits the Kawasaki Disease Program for regular checkups, spreading smiles and cheers. He likes to chat with the schedulers at the front desk and calls for his nurse practitioner by name: “Annette! Where is Annette?”

“We all look forward to seeing Thomas’ smile when he comes for his clinic visits. He has dealt with multiple hospitalizations, injections, blood draws and testing with an amazing maturity for someone of his age. He remembers the names of all his caregivers and lights up the room with his wonderful energy,” says Annette Baker, nurse practitioner.

Thomas is now taking just one baby aspirin per day and no longer needs injections. A recent CT scan showed great improvement in his coronaries.

“We’ve learned a lot about this disease since coming here,” Valerie says.  “Lots of doctors don’t know much about Kawasaki or how to recognize the signs.”

Valerie connected with other parents on social media support groups. “A lot of Kawasaki cases are treated fast, and the children have no coronary damage. Having those parents trying to comfort you doesn’t make it easier when you know your child does have coronary damage and is not responding to treatment.”

What did help, Valerie says, was when a woman contacted her to say her brother, now 39, was one of the first documented cases of Kawasaki in the U.S. Despite having four enlarged coronary arteries, he lives a healthy, active lifestyle.

“Hearing that made me hopeful,” says Valerie.

As for Thomas, “He’s starting to look like himself again. He was so swollen at one point — now he looks like the boy we knew.  We know we’re not at the finish line yet, but we have hope now and want to give others hope, too.”

Thomas with his nurse practitioner, Annette Baker

Learn more about the Boston Children’s Kawasaki Disease Program.