Each child’s journey is unique at St. Jude Children’s Research Hospital. Sometimes when patients are undergoing treatment, doctors are able to solve other medical mysteries. That was the case with Alyssa, a patient from West Tennessee.
“Since Alyssa was born, she had a lot of medical issues. Premature. She had a heart condition. Neurological issues. She has a lot of different medical things. So for a long time we went to a lot of doctors, a lot of specialists. And we asked a lot of questions and pretty much got nothing in return. No answers. No reason. Nothing to put the puzzle together,” said Angela de Jong, Alyssa’s mother.
The answers they were looking for came from St. Jude in the midst of Alyssa’s fiercest battle yet.
“In May of 2012, some of her moles had started to change – something didn’t look right. So I took her to the pediatrician who told me, ‘Oh, don’t worry about it. But if you’re really going to worry, I’ll send you to the dermatologist.’ Two weeks later I got the phone call and he said, ‘Your child has melanoma.’”
Each year fewer than 70 kids in the United States under the age of 10 are found to have melanoma. Alyssa’s doctor sent her to St. Jude.
De Jong confessed she immediately did what she was advised not to do and went on the Internet and Googled her daughter’s condition.
“Most of the cases we found online, the prognosis was not good,” she said.
Alyssa was in a race against time. If her melanoma spread beyond the lymph nodes, her survival rate could be less than 20 percent.
“We found out that it had traveled. So it did make it to the lymph nodes. So all this is happening and you feel almost helpless like, I wish I could do this for my child. You want to do everything you can to protect your child and you can’t always do that,” said de Jong.
While Alyssa was at St. Jude for melanoma treatment, her doctor was able to find the reason for all of Alyssa’s other health problems.
“When you have too many things together, you have to think of a syndrome. Because it’s too much coincidence to have three or four or five organs affected at one given time,” said Dr. Alberto Pappo.
Dr. Pappo was able to link Alyssa’s melanoma and her other health issues to a genetic disorder called Koolen-de Vries syndrome.
“It made me feel very happy that we finally had an explanation, but more than anything I know the mother was extremely happy to have someone give them at least an explanation as to why all of this had happened, irregardless of the melanoma,” said Pappo.
“I think we wouldn’t know what Alyssa had. I think we’d still be wandering from specialist to specialist and doing whatever we can searching for answers and probably not getting them,” said de Jong.
The diagnosis allowed doctors to begin coordinating her care more thoroughly and treat her whole body.
“Now we could identify a dentist, an endocrinologist, we could identify a cardiologist that would take care of her cardiac issues. We could identify an orthopedic surgeon. Because after all, we’re pediatricians and our job is to take care of the whole patient,” said Pappo.
Even with the discovery of the Koolen-de Vries syndrome, Alyssa still faced a tough battle with melanoma.
“I’m thankful we were at St. Jude and they were very proactive. We had to do another surgery and they took out the rest of her lymph nodes, trying to find out how far the cancer had actually traveled,” said de Jong. “Fortunately it had not made it to the organs. The cancer would have been everywhere. And I don’t even want to think about that.”
Every year during the FedEx St. Jude Classic golf tournament, FedEx honors a St. Jude patient by naming one of their aircraft after a patient at St. Jude. In 2016, Alyssa was surprised with her name on the side of an airplane.
Now 14 years old, Alyssa is cancer free. She is finished with treatment, but like all patients, she continues to receive regular check-ups at St. Jude.
Tickets for this year’s St. Jude Dream Home Giveaway in Chattanooga are sold out, but you can still tour the home on weekends through Sunday, June 18.
Watch WRCB Channel 3 on Sunday, June 25 from noon – 1 p.m. for the home drawing along with several other prizes.