INDIANAPOLIS – A 9-year old boy is ready to celebrate the holidays at home after battling cancer four times.
Riley Osmon was diagnosed with acute lymphoblastic leukemia when he was 2 years old.
“Riley had been experiencing some reoccurring fevers and we didn’t really have any other explanation for why,” his mom, Carrie Osmon, told CBS4. “He was also experiencing pain, but he was only 22 months old so the ability for a 22-month-old to put into words everything they’re feeling is extremely difficult.”
Osmon remembered changing her son’s diaper, too. She said he would cringe anytime someone touched him.
The family eventually ended up at Riley Hospital for Children in downtown Indianapolis. The doctors there did blood work and determined Riley’s white blood cell count was higher than usual.
“We knew something was wrong, but it’s not what you think,” Osmon said. “That was absolutely the last thing we expected to hear. First and foremost, you go numb. Then, all the what ifs and all the where is this going to lead? How is this going to play out?”
Riley began treatment right away. For three years, he received chemotherapy. He also got infusions, which kept him in the hospital for a week or more.
“And the entire time, his immune system was compromised,” Osmon told CBS4. “Which meant he couldn’t be around the family. He couldn’t be around friends. For three years, you kind of live in a bubble and that is one of the most difficult things as a cancer family because that’s a time when you really need to have that support.”
Riley was at his last clinic appointment and about to receive his final infusion when doctors discovered his spleen and liver were enlarged. Riley’s cancer was back.
“We had been seeing signs prior to that visit. They had been getting some suspicious cells here and there. He was experiencing a lot of other infections, pneumonia and sinus infections. Lots of things were telling us his body wasn’t working properly,” Osmon said.
Riley started treatment again. At one point, he had a bad reaction to the chemotherapy and had a fungal infection. He ended up in the intensive care unit for 19 days. He also suffered a blood clot and struggled to breathe. He was rushed into surgery.
In 2016, Riley started a more rigorous treatment, which included radiation. At that point, he was 5 years old.
“We thought, ‘OK, we’re going to be on a good path.’ He started kindergarten in 2016. He only got about half the year in before he relapsed again,” Osmon said.
Doctors started exploring other options. They knew his lungs had sustained damage. Riley also had damage to his endocrine system, so he wasn’t able to produce his own steroid.
“When you’re sick, you need that,” his mom went on.
Riley wasn’t healthy enough for a lot of treatments, but the Osmon family felt lucky and blessed with the children’s hospital in Cincinnati, Ohio, accepted him for a program there. He received a treatment called CAR-T. Doctors took Riley’s cells, modified the T-cells and put them back in his body. The thought was that the cells would then fight the B cells that were mutating into cancer.
Unfortunately, after a year of remission, the Osmons received more bad news.
“We were at our one-year checkup with Cincinnati Children’s Hospital. He was the healthiest he had ever been. We were so excited that we were going to finally be on our path of healing,” Osmon shook her head. “They did a sample, a spinal just to make sure, and found he had a very high load of leukemia cells in his spinal fluid.”
Osmon said the doctors were shocked that Riley hadn’t been experiencing headaches or nausea. However, they said it was possible that because his body was so used to having the leukemia, it didn’t show any signs or symptoms of illness.
The medical professionals at Cincinnati Children’s Hospital opted to try again. They put Riley through another round of CAR-T. Five months later, though, his B cells returned.
“So he didn’t have the leukemia yet, but he had b cells and we knew – because of his history – once he had the B cells, it was only a matter of time before they started mutating and turned into those leukemia cells,” Osmon explained.
Riley’s body didn’t handle the second round of therapy well. He experienced neurotoxicity and ended up in the intensive care unit. He was combative and lost the ability to speak. He also lost movement on the right side of his body.
Riley went to another children’s hospital. This time, the entire family flew to Seattle with hope for a new and more aggressive round of CAR-T. It too had a profound effect on Riley’s body.
“We got to the point where his brain was swelling and it was swelling very quickly. They told us anybody that we wanted to say goodbye needed to come and tell him goodbye,” Osmon said.
The doctors in Seattle sedated Riley and tried to give his brain a break. For 12 hours, the child fought for his life. The medical staff worked feverishly to keep him alive.
“When he woke up from that induced coma, he couldn’t talk and he couldn’t move. The only thing he could move was fingers and toes. He had to relearn how to do everything…how to eat, how to chew, how to swallow, how to talk, how to walk, how to go to the bathroom,” Osmon recalled.
At that point, Riley was 8 years old and had been battling cancer for six years. Doctors decided to end the CAR-T and instead, try a bone marrow transplant. They considered it to be a life-or-death situation.
“By April, we were at Riley Children’s Hospital and starting the preparatory chemo. It was the heaviest, hardest hitting chemo he had ever seen. He really was very sick and just felt really horrible,” Osmon said.
Riley struggled. His family, though, surrounded him with love and encouragement.
“Riley loves video games and at the end of the video game you have the end boss and you have to really fight that end boss,” Osmon said, optimistic. “So, we talked to Riley ahead of time and told him this is your end boss. This is the time you have to fight! No one else can fight it for you, you’ve got to be strong and go forward. I talk to him and I talk to all of my kids that being brave is not the absence of fear. It is going forward and working hard even in your fear.”
Riley was strong. Riley pushed on. On May 1, 2020, he received his 13-year-old sister’s stem cells.
“He has beaten the odds so many times and I think its because…well, I don’t know why,” Osmon said, tearing up. “I mean, I really don’t know why.”
Riley is now in remission, although that word is a bit tricky for the family. They live each day and through each doctor’s appointment cautiously.
“Remission just means they’re not finding any of the leukemia cells right then on that day,” Osmon stressed.
The family is now pushing for more pediatric cancer research. They’re grateful that Riley has beaten the odds but say he still has lingering side effects that he will likely deal with for the rest of his life. Not only does he have high blood pressure, but he may face developmental and processing delays.
“Things like puberty can be significantly affected by all of this. He may not go through puberty on his own. The way he grows and develops over time – he’s already small for his age – he may not be able to make up that difference in terms of height,” Dr. Jodi Skiles, medical director of the pediatric stem cell transplant and immunotherapy team, told CBS4.
“That’s all the stuff that’s not related to actual organ function. In the setting of childhood cancer survivors, we also have to think about what the long-term toxicities to the internal organs are. Specifically, we spend a lot of time thinking about heart function and what all of these therapies have done in terms of cardiac risk factors in the future.”
Dr. Skiles admits Riley has been through a lot. Data from Riley Hospital for Children shows the facility diagnoses and treats 60-70 kids for leukemia per year. A majority have the same kind of cancer Riley had. Few, though, battle it four different times.
“It can be very overwhelming,” Skiles said.
The Osmons are counting their blessings. Riley is doing well. He has garnered the nickname “Mr. Awesome” because of his positive attitude.
“He just lived every day, whether he was sick, whether he was vomiting, whether he had a headache, he still played and still wanted to be with his sisters and his mom and dad. He was just awesome!” Osmon exclaimed. “He just kept going. He didn’t let it hold him back.”
The Osmons are hoping to raise awareness for pediatric cancer so that other families don’t have to experience what they have.
“If we can help push that research forward so that we can find less toxic forms of treatment for kids, that’s ultimately what our goal would be and to allow these kids to thrive,” Osmon said.