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Jarett's Journey

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Young man beat cancer, but treatments came at a cost

By Kacie Goode

Kay Rogers holds her son’s hand, gently rubbing her fingers against his. He smiles. It’s a part of Jarett that hasn’t been lost. At 20 years old, Jarett Rogers’ life is much different than it was three years ago, before the cancer and before the brain damage. Though he has Down syndrome, he has always been a fairly independent person, but now he is bound to a wheelchair, unable to speak and dependent on others for care.

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“He’s been through it, bless his heart,” his mother said. “He’s been through the wringer.”

Jan. 8, 2014

Kay noticed bruises had started to appear on Jarett’s arms, and he had a swollen lymph node. It was winter in 2014. Worried, she took him to the pediatrician, and the doctors wanted to do some bloodwork. She already had her suspicions of the diagnosis.

According to the National Down Syndrome Society, people with the disorder are at an increased risk of developing certain medical conditions, including congenital heart defects, thyroid conditions, respiratory and hearing problems and Alzheimer’s disease. Childhood leukemia is also among the risks.

The night of his appointment, Jan. 8, Jarett was admitted to Kosair in Louisville, what is now Norton Children’s Hospital. Doctors there confirmed he had acute lymphoblastic leukemia (ALL).

“We started pretty intense treatment at that point,” Kay said, and Jarett was to receive that intense treatment for eight months.

Nearing the end of that “intensive phase,” however, Kay started noticing changes in her son. Something wasn’t quite right. Maybe it was just the average side effects of the chemo. But when his condition worsened, it was time to look deeper.

“It was like a 2-percent chance of it happening,” she said. But Jarett was in that percentage. The intrathecal methotrexate was damaging his brain.

“Kids with Down syndrome, the cancer responds well to chemo, but they’re very sensitive to the toxicity in the chemo,” Kay said. “For some reason, they are extra sensitive to the methotrexate.”

Reports from the U.S. National Library of Medicine and the National Institutes of Health indicate that ALL in children with Down syndrome presents a higher frequency of adverse effects. A heightened sensitivity to methotrexate and a predisposition for infection were also noted. But the drug has been discovered to have a significant impact in treating leukemia and is an integral component for treatment of ALL, despite its association with acute, subacute and chronic neurotoxicities.

For Jarett, who received intrathecal administrations of the treatment directly into his spinal fluid, the neurotoxicity is severe.

The changes started slowly. His voice became a whisper, and his movements weakened. The damage triggered dystonia — severe muscle spasms — and Jarett had to be kept mostly asleep for a few weeks, his mom said. When he woke up, everything was different.

Even with his prior developmental challenges, Jarett was a pretty independent teen. He could cook some things by himself, and overall take care of himself. He loved to sing and was often the life of the party. Now, he is bound to a chair and fed through a tube. His vocal chords work, though he’s not yet able to speak. But Jarett is still there, his mom said. He knows those around him, he laughs when something is funny and he does his best to communicate with the world around him. 

One day at a time

Following the diagnosis of the damage, Jarett and his family practically lived at the hospital between August and December. Today, Jarett does outpatient therapy at Frazier Rehab Institute in Bardstown three times a week. It’s there that his therapists are working to help build back his strength in certain areas and hopefully improve his quality of life.

“Our goals are to develop his postural stability, to be able to hold positions,” and to weight-bear, said Scott Burgener, who has been an occupational therapist with Frazier for 22 years.

“As a pre-goal, I guess it’s to get him to do things more volitionally,” he said. “He’s doing much better. This is the best we’ve seen him do, so he is improving.”

The process is the same for most patients, Burgener said, identifying needs and desires and creating a plan to address those objectives. Burgener works closely with physical therapist Melina Upton in Jarett’s rehabilitation, and with help from therapy assistant Kim Ray, whom Jarett adores.

While they work with Jarett to build his muscles and balance, speech language pathologist Karen Mills works with him on improving oral motor control. The goal for his work with her is to help him improve how he handles foods and liquids, swallowing and also communication. In many of his sessions, she encourages Jarett to use a tablet to indicate when he wants to hear more music. In a recent session, she sang along to “John Deere Green” and encouraged Jarett to try singing with her.

She’s been working with Jarett for the past couple of months, and he’s shown progress.

“He’s swallowing more often and quicker than he was before,” she said. “And at times, he shows really intentional movement to touch the iPad. He still fatigues easily, but he’s definitely getting stronger.”

Dealing with physical and mental challenges has been hard, not only for Kay and Jeff, but also for Jarett as they try to explain to him what is happening.

“He went though a lot of stress and mental anxiety,” Kay said of when the changes started. “It’s hard for a typical child to understand what they are going through, and then when you take a special-needs child,” it becomes harder.

Kay said she and Jeff hope their son will continue to make progress and one day be able to eat again. While he improves, though, it’s uncertain if he will ever come out of the wheelchair.

A need for more research, funding

When Kay and Jeff learned their son had cancer, it was like they stood still, trapped, while the world continued on around them.

“It’s a hard, long road to go through,” Kay said. “It’s hard to watch your child suffer and stay sick all the time. It’s like nothing I’ve ever been through. But you have to stay strong for your child.”

In a family that has gone through pediatric cancer and witnessed many others go through the disease, Kay would like to see more funding given to research. Less than 4 percent of federal funding is dedicated solely to childhood cancer.

“I wish there was more funding to find a less toxic cure for these kids, because it’s not always the cancer that kills, sometimes it’s the chemo.”

Jarett will celebrate four years cancer free in January, and even with the devastating effects of treatment, Kay said she has learned to count her blessings, to take life one day at a time and be grateful for what she has.

“That’s one thing I’ve learned through this whole process. You watch people around you, and you don’t stop and realize just the littlest things in life you take for granted,” like Jarett’s voice, she said. “I’m thankful to God that he’s still with me. I thank God every day that it’s not worse, and I pray for my son every day that God will get him through this and help him get the results that he needs.”

Kay said she is thankful to friends, family, community members, schools, doctors and others who have helped and supported her family in recent years, from benefits to prayers. Even his Facebook page, Team Jarett, has nearly 2,000 followers.

While Jarett’s future abilities are uncertain, what progress he does make is promising to his parents. They remain positive as they continue to care for their son. And Jarett, despite everything, still shares his beautiful smile, which has provided Kay with strength.

“The only thing that keeps me going is that he still manages to smile every day.”