Moving On: Jordan is Grateful for His Time at The Inn

When people first hear about The Children’s Inn, they are likely to imagine a space filled with…well…children. And indeed, many of the families that stay at The Inn are there for the care of school-aged children and teenagers. But The Inn provides “a place like home” not just for children and teens, but also for young adults up to the age of 30 who have come to the NIH seeking their best chance for a cure to rare and serious illnesses.

Jordan with a friend’s horse near his home in Ocala, Fla.

One such young adult is Jordan, who spent parts of two years staying at The Inn for treatment of a tumor at the base of skull. A friendly young man from Ocala, Fla., Jordan first came to The Inn in June of 2020 to take part in a trial for a drug that could shrink a tumor growing at the base of his skull.

“My local neurologist knew about the NIH and referred me to the trial,” Jordan remembered. “I have this inoperable tumor that is growing at the base of my skull. This drug is the only option. So we sent my information to NIH and they started the process.”

Jordan’s tumors are associated with neurofibromatosis, a rare condition that causes tumors to form in the brain, spinal cord, and nerves. Just prior to beginning the trial, the drug Jordan was taking was approved by the FDA for children ages 2 to 17. But for Jordan, he would enter into the adult trial.

“When I started, I felt completely fine and safe,” he said. “I was a little nervous taking the first dose, but they watched me and I was fine with it.”

During his time at The Inn, Jordan befriended several other residents and staff members. He felt welcomed at The Inn, sharing his positive outlook on life with those he encountered.

At home in Okala, Jordan is an active member of his church. His faith has helped nurture that positive outlook, allowing him to recognize that there is no taking back his diagnosis. Instead, he has striven to lead his life and serve as a role model for others.

“I can’t change [my diagnosis] right now and I can’t change it tomorrow,” he explained, “so I don’t even think about it.”

Jordan and his dog, Kylie, a fellow cancer survivor.

Legally blind as a result of a pilocytic astrocytoma tumor on his optic nerve, Jordan has been accompanied by family on each of his trips to The Inn. That won’t change once he turns 30 and ages out of The Inn, as he will have to rely on public transportation and walking across busy roads to get to the NIH.

“I live in the country where we don’t even have a bus system,” he laughed. “It will be my first time on the Metro. I can see close up, but when it comes to traveling it’s hard for me to see the signs, so there’s always a family member with me.”

While he has loved his time at The Inn, his attitude on life has him ready to face new challenges on his trips to the NIH.

“The Children’s Inn has been a wonderful place,” Jordan said. “I’d have liked to stay there longer, but you have to grow up eventually!”

To help The Inn continue to provide “a place like home” for children, teens, and young adults like Jordan, click here.