“Our Joey likes to move at his own pace,” said his mother Denise Belles.

Joey arrived at Cook Children’s in June of 2019. What his family thought were headaches from recent growth spurts and allergies turned out to be a rare form of cancer called pineoblastoma. A tumor was growing in his head and spinal fluid was building up in his brain.

“At the time, he was going to football camp and loved it. Then we did the CT scan and within days, we got the diagnosis that changed our lives forever,” said Denise.

On July 3, Cook Children’s neurosurgeon Daniel Hansen, M.D. removed Joey’s tumor. Luckily, Dr. Hansen was able to get the entire mass at once. From there, Joey began a strict regimen of proton radiation therapy. In November, he was admitted to Cook Children’s Bone Marrow Transplant Unit to begin stem cell chemotherapy.

“It was really hard on his body,” Denise said. “You deplete them (patients) of everything and start from scratch. But the doctor said to Joey ‘You don’t have a shot if you don’t have the right attitude.’ So we came up with a plan and no matter what, we were going to be positive about it.”

Part of the plan came together after a visit with a physical therapist. She asked Joey to start walking and told him that if he kept track of his progress, he could win a gift card once he hit 10 miles. The incentive is part of a new program at Cook Children’s called ‘Miles in Motion’ which encourages hematology/oncology patients to get moving.

“When I first got here, I was sick and I was moving pretty slow,” said Joey. “We started walking the first day, but I could only do two laps.”

Joey would log his walks on a piece of paper in his room. Soon, the papers began piling up as he started making multiple laps around the unit.

Physical therapist Lydia Robey was part of the team that came up with the idea for ‘Miles in Motion’ as part of a quality and safety initiative to get patients out of their beds and exercising.

“We were brainstorming how to increase activity for this particular group of patients and one of our dieticians pointed out that these kids were losing muscle mass at a far greater rate than they should,” said Robey. “Some of that was due to inactivity, as well as steroids and medications that cause muscle atrophy. We started reviewing the literature and the evidence just became overwhelming of how important exercise is.”

Robey said due to varying blood counts, patients are not always able to do resistance exercise. However, she says walking is always good.

“Everyone agrees that walking is safe, so we wanted to find a way to motivate and empower families and patients to start walking as part of their daily routine,” explained Robey.

Joey and his parents did just that. They committed to walking each day during his four separate hospital stays, which spanned between two and four weeks each.

“For about a week, I did two to four laps a day and then I started getting to 10 and I thought ‘Wow, this is good!’ and then I started doing 20,” Joey exclaimed.

Before he knew it, Joey was walking more than 30 laps at a time, a feat that seemed impossible when he first started.

“There really is a noticeable difference between the first time I saw him and how he is now,” said Haleigh Schreck, one of Joey’s physical therapists. “He walks every single day on his own, no matter what he’s going through treatment-wise. His drive and motivation are very impressive.”

Last week, Joey hit a milestone that not even his physical therapists thought was possible. Joey marked off his 26^th mile in the ‘Miles in Motion’ program, which is equivalent to walking an entire marathon. Walking a marathon was never even a goal for Joey or for the ‘Miles in Motion’ program, but as he got closer to mile 26, he knew he had to go for it.

“We were just like, we’re this close to getting a marathon and I decided ‘I’m gonna do this,’” said Joey.

On Thursday, Feb. 20, Joey made his final laps around the unit were he’d been walking for the past four months. This time, nurses, child life specialists and physical therapists lined the walls. They held up handmade signs and cheered him on. With just five laps to go, Joey took one step at a time, thanking his mom and dad for their support as they finished the journey together.

At the final lap, excitement built as the medical staff cheered his name. “Joey, Joey, Joey!” they chanted until breaking into a loud roar as Joey ran through the finish line, a paper streamer strung across the hallway.

He did it. Joey walked a marathon.

“It was awesome,” he said basking in the wonder of his achievement. “I could have never done it without my family, the whole team we have. Everyone has been so supportive of me. It’s just truly amazing what we have done, me and my parents.”

This wasn’t the first marathon completed by a member of the Belles family. Denise ran the New York marathon in 2010, but she said this one was much better.

“This one is more rewarding,” Denise said. “His training was harder. I definitely feel more fulfilled with his than mine. It means so much more.”

If that wasn’t enough, finishing a marathon wasn’t Joey’s only major accomplishment of the day. It was also his final day of chemo.

“In the beginning, I really thought this was going to be devastating,” said Joey. “But everyone has been helping me and pushing me. With them, I knew I could get through this and do it with power.”

While he did have a supportive family and medical team, Joey also did what his doctor advised and had the right mindset throughout his cancer journey.

“Joey has been an amazing patient to work with,” said Haleigh. “I can’t remember a time when he wasn’t just smiling and having the most positive attitude. He blew all of our expectations out of the water.”

“I’m so proud of him. It shows how if you have the right mindset then you can overcome anything,” his mom said.

With his treatment coming to an end, Joey and his family are making plans for the future. They’re downsizing to a smaller home so they can take more trips together. This summer, they hope to go to Italy.

“We’re a close-knit family. We just love being together, but this has brought us so much closer,” said Denise. “We don’t want to wait to do stuff, like travel, anymore. We enjoy each other and we don’t take anything for granted.”

This is the daunting statistic looming over the heads of the team at the National Marrow Donor Program at Cook Children’s. Each day, this dedicated group of six sets out to see how many people they can enroll in the National Marrow Donor Program, also known as the Be the Match registry. Equally as important, they’re also tasked with contacting, scheduling and counseling donors who have been identified as a likely match.

“We have the potential to save anyone’s life,” said Jamie Kayser, the program’s director. “It’s not just blood cancers, the donors we identify also save the lives of patients with diseases like sickle cell anemia. We find donors for both adults and children.”

For Kayser, her work is more than a job. She’s one of the millions of people who have been deeply affected by cancer.

“When I was 27 years old, my first husband died of leukemia,” she explained. “He underwent two bone marrow transplants over the course of his treatment. I was not a nurse at the time, but going through it with him, I realized how important nursing was and I decided I was going to become a nurse.”

At the time, Kayser vowed to never work in oncology or in a bone marrow transplant unit. She ended up doing both. Her first role was as an oncology bone marrow transplant nurse at Cook Children’s, which she accepted in 1994. Seven years later she took over her current position as the director of the National Marrow Donor Program at the hospital.

“I say I’m doing the other side of transplant,” Kayser said. “There’s the side where the patients receive the bone marrow transplant and then there’s this side where we register donors, find matches for patients and get them ready to give.”

The National Marrow Donor Program is a nationwide registry. For those enrolled, the chance of being identified as the best possible donor for a patient is one in 300.

“There are two ways to donate depending on what the patient’s doctor requests,” explained Kayser. “The most common way is very similar to giving blood.”

Seventy-five percent of donors are asked to provide blood stem cells through a peripheral blood stem cell donation (PBSC) donation. This was the case for 21-year-old Andrew Kozman of North Richland Hills, Texas. He knew the chances of being identified as a match were rare when he signed up for the donor registry in late 2018. During his PBSC donation, he said he was shocked to receive a call just three months after he submitted his cheek swab in the mail.

“You always hear about the people who have been on the list for years and have never received a call,” said Kozman. “I was fortunate to get a call just months later. Everything has moved pretty quickly since then.”

To prepare for his donation, a nurse visited Kozman’s home for five days ahead of the appointment and injected him with a drug called filgrastim. The medication increases the number of blood-forming stem cells in the bloodstream. On the fifth day, blood is drawn and circulated through a machine that filters out the stem cells. The remaining blood is returned to the donor.

“It was just like getting a normal flu shot. I felt a little sore afterwards, but that’s it,” said Kozman. “I never really gave it a second thought. I signed up and found out that someone needed my help. I thought ‘I could sit in a chair for a few hours if it’s going to save someone’s life.’”

The second way to give is through a surgical procedure called a marrow donation or harvest. Only 25% of donors are asked to provide blood stem cells in this manner. This procedure is done at a hospital while donors are under anesthesia.

“Unfortunately, there is a lot of misconception about bone marrow harvests,” said Gretchen Eames, M.D., medical director of Hematology/Oncology and Stem Cell Transplant Program at Cook Children’s. “It is considered a minor surgery. There is no incision; no stitches or sutures are needed.”

During a marrow donation, blood stem cells are withdrawn through two small punctures in the back of the donor’s pelvic bone. Discomfort during recovery varies from person to person, but Dr. Eames says donors are usually able to manage any pain with Tylenol or hydrocodone. Most people will make a full recovery within a week.

Rebecca Proctor joined the National Marrow Donor Program registry in 2014 when she was a college student. Now a Neonatal Intensive Care Unit nurse at a Fort Worth hospital, she was also surprised to receive a call informing her that she was a match for a patient in need of a bone marrow transplant.

“I was definitely a little nervous when I first got the call,” said Proctor. “After agreeing to a marrow donation, I would have days here and there where I would panic. But I knew if this was going to save someone’s life then I could do it.”

Dr. Eames performed the procedure on Proctor at Cook Children’s, which is one of two bone marrow collection centers in Texas and the second busiest center in the U.S.

“We do approximately four to six bone marrow harvests a month,” said Dr. Eames. “Our donors come from all over the place. Many of them live here in the Dallas/Fort Worth area, but we have people who travel here from California, the east coast and the Midwest because they do not have a national marrow donor collection center where they live.”

For Proctor, the process was much easier than she anticipated.

“Besides a minimal amount of soreness, this really hasn’t been a bad recovery,” she said two days after her donation. “There’s some hoarseness in my throat from the breathing tube, but honestly, this is nothing compared to what my recipient has been going through.”

While donors don’t know who they are giving to, they are likely of the same ethnic background since donors and patients need to be a close genetic match. Given the current makeup of the National Marrow Donor Program registry, the likelihood of finding a match for a white patient is 77%. African American or black patients only have a 23% chance of finding a match.

To improve these odds, ethnic diversity among people on the registry needs to increase. To put it simply, more people are needed to join the registry.

“Everyone, when they turn 18 years old, should sign up for the National Marrow Donor Program registry,” urged Kayser. “We believe every patient should have an equal opportunity to find a match, regardless of their ethnicity.”

To increase those odds, Kayser’s team hosts booths at live events in North Texas as well as West Texas to enroll potential donors. They answer questions, collect information and cheek swabs.

Proctor, like most donors, encourages others to join the registry. Having gone through the process herself, she says she is glad she was able to help someone in need.

“This is something I am so proud to say I have done. Looking back, I would do it again in a heartbeat.”