One Little Boy’s Big Health Journey

October 09, 2023

Nine-year-old Noah J. is a tough kid who has beaten the odds. Before he was born, doctors told his parents his life expectancy was short. After his birth, doctors discovered he had glioblastoma — a fast-growing and aggressive brain cancer. He started chemotherapy at just four weeks old. After 12 rounds of chemo and three brain surgeries, he was officially in remission.

A new battle begins

The cancer treatments took their toll, and Noah’s immune system began its attack. He was diagnosed with two life-threatening complications of systemic inflammatory disorders. Even the smallest cold would send him to the hospital, often requiring the family to drive four hours for care.

Noah was given multiple rounds of steroids and a twice-daily, painful shot. To take part in a new medical trial with a lengthy hospital stay, he left school and moved to Gainesville with his mom, Krystal.

Finding the one medication that could work

When they realized this latest treatment hadn’t worked, Noah’s doctors found one last medication to try — a weekly injection of a drug that had worked for other people and, best of all, that Noah could take at home. But there was a hurdle: it wasn’t approved for kids under age 12. Krystal knew the only alternative was to stay in the hospital indefinitely to have a different treatment.

“As a parent, I just desperately wanted my child to get better,” Krystal said. “Noah didn’t have a lot of options left.”

That’s when Jaime, a registered nurse with the Florida Blue Care Team, jumped into action. With her deep knowledge of Florida Blue health plan benefits, she worked with Noah’s doctor, Jessica from our pharmacy team, and our medical directors on a special exception request for this drug to be approved for a nine-year-old with two rare medical conditions. After the team carefully reviewed the request and supporting medical literature, the drug was found medically necessary for Noah’s specific needs, and Krystal got the news she had been hoping for. In just two days, Noah’s medication – and the ability to do the treatments at home – was approved.   

A new, healthier life

Noah and his family had spent so much of his young life in hospitals, but thanks to his care team nurse, he was able to get the new daily injection treatments he needed at home. Noah has continued to improve and has stopped the steroids and other medications. Noah, Krystal, and their family are hopeful for the future.

“It was great to have someone in your corner who can help you navigate. Jaime is so kind, and I feel that she genuinely cares. You can feel how much she worked and invested in getting Noah his life back,” Krystal said. “I’ll be forever grateful. I don’t know where we’d be without her.”

Get the support you need at no extra cost

“Working on Noah’s case really warms my heart, especially seeing him doing so well,” Jaime said. “I want our members to know we can help no matter where they are with their health journey. In this case, Noah and Krystal needed help navigating an authorization for a specialty drug. We also help members with everything from education on their condition or procedure to just understanding their benefits and where to go for the care they need. We’re here to support them, and we have a whole team of nurses, social workers and, pharmacists here for them, and this support is available at no extra cost.”

Noah was assigned to a care team nurse due to his health journey, but Florida Blue members can also call the team directly to ask for the support they need.

Read more about our care teams or call them directly based on the type of health coverage you have:

• Individual and Family Plans (including Employer Provided Plans)
• Florida Blue Medicare Plans