On Thanksgiving day, 18-year-old Matthew Walker will spend time at his Radcliff home, enjoying a meal while surrounded by loved ones. For the past six years, small moments that many take for granted, such as enjoying a meal at the kitchen table, have been rare for him.
Last Thanksgiving, Matthew was in a hospital bed at the Cincinnati Children’s Hospital Medical Center. This is where he has spent many of his days since being diagnosed with T-Cell Acute Lymphoblastic Leukemia when he was 12.
According to Matthew’s father, Dion Walker, Matthew’s fight began in August of 2015, after an ordinary, fun-filled visit to Anderson Indoor Aquatics Center on Fort Knox. After swimming for a few hours, Walker and his wife, Angie, noticed Matthew had a baseball-sized lump on his neck that was not there that morning.
After taking Matthew to the emergency room of the Ireland Army Community Hospital on Fort Knox, personnel at the hospital did some blood work that was sent to Kosair Children’s Hospital in Louisville — now known as Norton Children’s Hospital. The Walker family received the diagnosis the next morning, just days before Matthew was set to start the seventh grade at North Middle School.
“I was stunned,” Walker said.
Walker said up until that point, Matthew did not show any symptoms of T-Cell Acute Lymphoblastic Leukemia that they knew of. However, unbeknownst to them, Matthew had been sleeping 18 to 19 hours a day during summer break, indicating excessive fatigue. Walker said he thought his son had simply been staying up all night playing video games and was sleeping into the day.
Matthew was treated at Kosair Children’s Hospital and went into remission in November of 2015. In December of 2016, while in the maintenance phase of his chemotherapy treatment, Matthew relapsed.
After undergoing an aggressive chemotherapy treatment, Matthew once again went into remission in February of 2017. He then underwent total body irradiation and more chemotherapy at Cincinnati Children’s Hospital before undergoing a bone marrow transplant.
After overcoming a life-threatening diagnosis of engraftment syndrome and graft-versus-host disease, Matthew’s bone marrow transplant was considered a success, with 100% donor engraftment. About a year later during a bone marrow biopsy, Matthew was still engrafted at 100% and was still deemed cancer-free.
However, bad news returned in January of 2019 when Matthew, after being cancer free for over 700 days, was diagnosed with a secondary cancer: Mixed Phenotype Acute Leukemia. Walker said this cancer diagnosis was a result of Matthew’s aggressive chemotherapy treatment used to fight his initial cancer diagnoses.
Matthew again went into inpatient care in Cincinnati and underwent two months of experimental chemotherapies in a clinical trial. He was then declared to be in remission and he received his second bone marrow transplant in April of 2019.
In August of 2020, after 477 days of being cancer-free, Matthew was diagnosed with Acute Myeloid Leukemia, another secondary cancer. He went into remission the following month and received his third bone marrow transplant in October 2020.
Matthew has received over 770 chemotherapy drug doses in his battle.
In January of this year, Matthew was diagnosed with thrombotic microangiopathy, a condition that causes organ damage due to the formation of microscopic blood clots in capillaries and small arteries. In February, he suffered an ischemic stroke.
Since suffering the stroke, Matthew has been on a path of recovery to regain his speech and function in his right arm and right leg. Doctors did not expect Matthew to survive the stroke, Walker said.
“It’s been a lot of speech therapy, physical therapy and just waiting for the brain to heal the best it can,” he said.
By June, Matthew was walking, talking and was even doing some jogging. However, Matthew began experiencing pain in his left hip and was later diagnosed with avascular necrosis, a condition that results from the temporary or permanent loss of blood supply to the bone. The disease has affected Matthew’s left hip and left ankle.
Walker said once again, this diagnosis was a result of Matthew’s aggressive chemotherapy treatment. On Dec. 10, Matthew is expected to undergo total hip replacement surgery. From there, he will go through physical therapy and later undergo surgery on his ankle.
Matthew currently is wheelchair dependent, though he is able to walk short distances.
Walker said throughout the past six years, Matthew has continued to smile through the endless medical procedures and worrisome diagnoses.
“I take my strength from him,” Walker said. “If he can go through that and smile and joke, I have no right to be down on myself.”
Still, Walker said, watching his son suffer has been excruciating. A U.S. Army veteran who served in the Iraq War, Walker said he would easily take deploying to combat 10 more times over dealing with watching his son battle one cancer diagnosis.
“I thought being in combat situations was stressful but going through this the past six years, it doesn’t even compare,” he said.
Walker said one of the most challenging aspects of Matthew’s fight has been watching his son miss out on his teenage years. He said it was difficult to watch Matthew recently scroll through photos of his classmates attending prom.
“His entire teenage years have been cancer-fighting,” Walker said. “He’s been in and out of the hospitals with chemo radiation so he’s missed out on being a teen.”
Walker said one major sources of support for his family throughout Matthew’s fight has been Cincinnati’s Ronald McDonald House, where his family has stayed while Matthew has received treatment. Recognizing the need for parents to stay close to their hospitalized child, Ronald McDonald House Charities provides free housing, meals and comfort services for hospitalized children and their families.
“When you’re in the hospital, you’re in full fight mode the entire time you’re there — you’re fighting for your kid and it’s stressful,” Walker said. “They provide us a home away from home.”
At the Ronald McDonald House, the Walker family has met and formed relationships with several families of hospitalized children. Walker said these relationships have been crucial throughout the past six years.
“Having someone else to talk to that’s going through the same thing you are, that helps a lot,” Walker said.
However, Walker said these relationships can lead to devastation when a child succumbs to their illness. He said a total of 17 children that he and his family personally knew have passed away in the past six years.
“Matthew deals with survivor’s guilt,” Walker said. “He’s like ‘Why are they gone and I’m still here?’ ”
Despite these feelings, Walker said Matthew tries to stay strong and honor the memory of his friends who have passed away.
“We try to live for them and we try to raise awareness for those kids that are no longer with us,” Walker said.
The Walker family also has formed close relationships with Matthew’s bone marrow transplant donors over the years.
Matthew received his first bone marrow transplant through an anonymous donor who donated to the Be the Match Registry, a diverse listing of potential donors for patients who do not have a fully-matched donor in their family. About a year later, the Walker family was able to identify the donor: Billy Santoro of New Jersey.
Since then, Santoro has kept in contact with the Walker family and has even visited Louisville to meet Matthew. In addition, Matthew has gone up to New Jersey to see Santoro and his family.
“He’s a son to us,” Walker said of Santoro.
Walker said when medical professionals search the Be the Match Registry for potential matches, donors are graded on a scale of one to 10 based on compatibility. While Santoro was considered a nine in the registry, a donor labeled as a 10 was found when Matthew had to undergo his second bone marrow transplant. This donor was Santoro’s twin brother, Joe.
According to Walker, Joe Santoro was inspired to donate to the Be the Match Registry after meeting Matthew with his brother.
Matthew also recently got to meet the donor for his third bone marrow transplant: Valeria Alvarez of Mexico. A medical student, Alvarez donated to the Be the Match Registry in honor of her mother, who died of cancer in 2017, Walker said.
In the times when Matthew has been on his feet and in remission, he has found a passion in paintball. Before undergoing his health battles that started last year, Matthew competed with the Louisville Fusion paintball team, a traveling tournament team. He hopes to once again compete on the team next year, Walker said.
Matthew also enjoys reading about cars and has recently taken up an interest in grilling steak. Walker said Matthew has spent a lot of his time perfecting his steak recipe at the kitchen area of the Ronald McDonald House in recent weeks.
“The other day he had me go to Applebee’s and Texas Roadhouse to compare their steaks to his and he said his was better,” Walker said with a laugh.
In September, Matthew received his high school diploma from Hardin County High School. Walker said throughout Matthew’s treatment, he was able to study virtually and teachers would sometimes visit him at home when he could not go to school.
“The Hardin County Board of Education has been phenomenal throughout these past six years,” Walker said. “…He never fell behind.”
Since Matthew’s initial diagnosis in 2015, Walker has kept an online journal of his son’s fight against cancer through the Facebook group Matthew’s FIGHT. On the page, Walker posts regular updates on Matthew’s life, from updates on his medical procedures to the moments of joy Matthew has been able to experience amid his struggles. The page currently has over 7,000 members, Walker said.
On the Facebook page, Walker also makes a point to support other area families who are dealing with a pediatric cancer diagnosis.
“If I can share your child’s story on the page and just ask for a prayer, maybe that’s 7,000 other people who will pray for your child that day,” Walker said.
Through the Facebook group, Walker said he also hopes to help change the public narrative around pediatric cancer. He said he dislikes when pediatric cancer is referred to as “rare.” He said he believes this narrative contributes to a lack of funding for pediatric cancer research.
“To me, it’s not rare when your family is in it,” he said.
According to the National Pediatric Cancer Foundation, Only 4% of annual federal funding on cancer research is directed towards treating childhood cancer. Cancer is the number one cause of death by disease among children and each day, 43 children in the U.S. are expected to be diagnosed with cancer, according to the foundation.
Walker said for those interested in helping pediatric cancer patients and their families, donations of blood and plasma are always needed. He said since initially being diagnosed with leukemia in 2015, Matthew has undergone over 470 blood, platelet and plasma transfusions.
Another way to help, Walker said, is by donating to regional and national nonprofits such as the St. Baldrick’s Foundation, Gilda’s Club, Shirley’s Way, Bree’s Blessings and the Leukemia & Lymphoma Society.
“I can tell you that these organizations are doing the Lord’s work out there,” he said.
This week, Matthew will spend a few days in Radcliff for Thanksgiving and will then return to Cincinnati on Saturday. He is set to be in-patient Dec. 9 in preparation for his hip surgery.
“We’re going to come back up Saturday ready to continue fighting,” Walker said.
To join the Matthew’s FIGHT Facebook group, visit facebook.com/groups/MatthewsFightAgainstLeukemia.
Andrew Critchelow can be reached at 270-505-1413 or firstname.lastname@example.org.