Story by: Dana Matukas on August 9, 2021
Kelsie Cooksey was devastated by the news from Katlyn Claywell, her friend, co-worker and Burkesville, Kentucky, neighbor, that Katlyn’s 19-month-old daughter Kamryn had been diagnosed with leukemia and needed prayers.
Kelsie had a boy around the same age and felt her friend’s anguish.
Days before, Katlyn had noticed a rash on her little girl with the appearance of purple-and-red pin marks. Within hours, the rash appeared to be spreading from her bottom to her stomach. She sent pictures to a family member and nurse who showed them to an emergency room doctor. The message back was startling: Bring her in immediately.
Kamryn’s white blood cell count was 44,000 — more than four times normal.
“As the doctor shared the count, I sat in disbelief that my little girl was so sick,” Katlyn said. “He explained Kamryn would need to see a blood specialist tonight. He recommended Norton Children’s Hospital.”
At the emergency department, they were met by Adam Patterson, M.D., pediatric emergency medicine specialist with Norton Children’s Emergency Medicine, affiliated with the UofL School of Medicine.
“Dr. Patterson had an immediate calming presence,” Katlyn said. “After further evaluation and tests, Dr. Patterson explained he would not sugarcoat the initial signs pointing to leukemia.”
Immediately Kamryn was given blood and platelet transfusions. The next morning she was diagnosed with acute lymphoblastic leukemia. Kamryn began her care with Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine.
“I had noticed Weston had been sleeping a ton lately, but I assumed he was a growing boy at 30 pounds and needed the rest,” Kelsie said.
During a diaper change, Kelsie noticed little red dots. Recalling what she had heard about Kamryn’s rash, she started searching for information.
“All signs pointed to petechiae rash, which is linked to leukemia. I felt the need to reach out to someone,” she said.
Kelsie contacted a nearby hospital to talk with a pediatric nurse about the rash, and the nurse recommended a visit to Weston’s pediatrician. Kelsie opted to go to the local emergency room to rule out her concern.
With a quick diagnosis of basic diaper rash, Kelsie and Weston were sent home. Her motherly instinct, however, was telling her otherwise — something was not right with her son. Weston soon appeared extremely tired after church. Kelsie’s husband, Josh, picked up Weston from napping and felt a knot on the back of the little boy’s head.
Kelsie called the hospital again. This time, the same pediatric nurse said to come in right away.
After some bloodwork on Weston, the nurse immediately contacted Kerry K. McGowan, M.D., pediatric oncologist/hematologist with Norton Children’s Cancer Institute, to review the results. Soon the family headed to Norton Children’s Hospital in Louisville — about a 2 1/2 hour drive.
“I called Katlyn on our way to Norton Children’s to explain the situation,” Kelsie said. “Everything became a blur with all the tests and bloodwork. Katlyn and her husband came to Weston’s room to pray for both children that evening. By the early morning hours, Dr. McGowan explained the likelihood it was leukemia. I literally blacked out for a moment.”
Kamryn and Weston both were diagnosed with B-cell acute lymphoblastic leukemia within days and only a few doors down from each other.
Leukemia is the most common type of childhood cancer. Survival rates for this blood and bone marrow cancer continue to improve, thanks to research and better treatments.
After getting a diagnosis, both children were scheduled for surgery to insert a central line catheter in the chest that would make delivering chemotherapy and drawing blood easier and reduce the number of needle sticks. They also underwent a bone marrow aspiration from the hip to remove a sample for testing.
Kamryn and Weston would go home after nine days. Within 28 days, Kamryn was in remission.
Weston’s journey to remission would take longer. Like Kamryn, nearly 95% of children enter remission — no leukemia cells in the bone marrow and the return of normal cells — after about a month of treatment. Even after reaching remission, treatments and appointments continue for these patients.
“It was so hard to hear he was not in remission,” Kelsie said. “After testing, they found a small percentage of leukemia cells still in his bone marrow.”
That meant Weston was moved from standard-risk to high-risk treatment (more chemo/stronger treatment).
But encouragement from the team, including Mustafa Barbour, M.D., another pediatric oncologist/hematologist at Norton Children’s Cancer Institute, and Simone Chang, M.D., who was completing a fellowship at the time, provided a healing touch.
According to Dr. Barbour, pediatric cancer and treatments impact every child differently.
“Sometimes we must have patience,” Dr. Barbour said. “A delay in remission can be hard for families, but we must stay focused and adjust the treatment when needed to achieve better results. We learn something new from every child we treat. Pediatric cancer treatment continues to evolve with advancement and research.”
It would take a few more months of chemotherapy, but Weston also reached remission.
“To this day, Kelsie and I both feel this journey was not meant for us to do alone,” Katlyn said. “It was meant for us to walk this journey together. Of course, God has his hand in everything.”
Norton Children’s Cancer Institute is able to bring quality care to kids throughout Kentucky with the help of generous donations.
A diagnosis of leukemia for Kamryn and Weston shook the community of Burkesville. Shocking news turned into a united front of support for both families.
“The people of Burkesville were amazing,” Kelsie said. “They lit the town in orange to give hope for both Weston and Kamryn.
“Co-workers, friends and family hosted fundraising auctions, delivered food and well-wishes throughout our journeys. This was such a dark time, but with the tremendous outpouring of love the tough days were brightened.”
Kamryn and Weston are still in remission — each with their own daily/weekly maintenance schedule with chemotherapy and routine spinal tests. Both make routine visits to the Norton Children’s Infusion Center in Louisville.
“Weston says that we’re going to ‘Barbour’s house’ when we visit Norton Children’s Hospital,” said Kelsie. “He doesn’t really look at it like going to the doctor. It’s like family; he feels love from the entire team.”
Recently Kamryn and Weston led the parade for their community’s Little League opening ceremonies, themed “A Warrior’s Fight,” to reinforce their perseverance and bravery.
“Kamryn and Weston are such tough kids,” said Esther E. Knapp, M.D., hematologist/oncologist with Norton Children’s Cancer Institute. “Many adults would not be able to handle all that they’ve gone through with half the resilience and grace — they and their families have done all this with a smile on their faces. It’s truly an inspiration. ”
Katlyn and Kelsie joined forces in 2020 to ease the burden on others who were faced with similar journeys — by collecting items for the food pantry at the Addison Jo Blair Cancer Care Unit at Norton Children’s Hospital. They also donated toiletries, phone chargers and other necessities for families who suddenly find themselves in the pediatric cancer unit.
“You can find joy, even in the strongest of storms,” Kelsie said. “You can see the blessings that come out of something that’s so hard.”