At just 2 years old, Grayson Morales Capote’s world changed overnight. What began as a typical Saturday evening filled with family time and backyard barbecues turned into a journey no parent ever imagined. Grayson, a happy, active toddler, started experiencing what seemed like a simple stomachache. But soon, a series of events led his family down a path they never expected.
After a fun-filled day, Grayson was ready for bed but complained of discomfort in his side and needed to use the bathroom. His mom, Amanda, initially thought it was a simple colic pain—nothing that a little Tylenol couldn’t fix. “The next day, my husband called me and said that Grayson was very upset. He had no fever, but his belly was big and very hot to the touch. We took him to the local ER by 9 AM,” Amanda shares. Their trip to the local ER revealed the first alarming sign: Grayson’s spleen was significantly enlarged. His mom recalls, “They were looking for a bowel obstruction but found his spleen to be too enlarged, prompting more labs. Labs showed blasts (immature cells). They said he needed to be transferred to Nemours Children’s to get the fastest results. That it was either mono or leukemia.”
Within hours, the local hospital made arrangements for Grayson to be transferred to Nemours Children’s Hospital, Florida in Orlando. The doctors acted quickly to determine the cause of Grayson’s unusual symptoms. It was a moment that no parent is ever prepared for, and it came just two weeks before Grayson’s second birthday. The diagnosis was, in fact, leukemia.
Grayson’s family was thrust into the whirlwind of cancer treatment—a journey filled with long days and sleepless nights. But from the moment they arrived at Nemours, they knew they were in the right place. “We have had an amazing journey with the nurses on staff at Nemours in the infusion center and inpatient. It was terrible on nights when he would spike fevers, and we had no sleep. But the nurses on the day shift were amazing and caring, understanding the lack of sleep and exhaustion we were facing. Tara and Kelly were like family. They helped ease my frustrations and concerns with what to expect and what to ask.” The doctors and nurses at Nemours became more than just caregivers; they became an essential part of the family’s support system.
Grayson’s care team has made a lasting impact on his family, supporting them every step of the way. “Dr. Maxwell was our diagnosing doctor, and we adore her! Dr. Douglas has been by our side numerous times, and she is straightforward and has everything to do with our son’s care. She and Dr. Maxwell were just the right fit for when we came into this difficult time. They were exactly what we needed in those moments,” Amanda shares.
Today, Grayson is 3 years old and continues to fight with the strength and courage of a warrior. While there have been complications, the care team at Nemours has made the process as smooth as possible. “They make the appointments and communication very easy to follow and always keep Grayson’s care at the forefront. It’s not frustrating; they explain why each step is needed,” says his mother.
As the family looks to the future, they remain hopeful and committed to continuing Grayson’s care with the oncology team at Nemours. The bond they’ve formed with the staff has made the commute and long hospital stays more manageable. “We want to continue our journey with the Oncology team at Nemours. They are such a crucial part of our lives, both mentally and physically!” Grayson’s mother affirms.
Amanda offers this advice for other families going through similar challenges: “Ask questions as you can handle them in the moment so you can process the bigger picture.” Amanda shares how taking it step by step was so helpful. “I could not process the 2.5-plus years of our treatment, and it was so nice to have it broken down in smaller parts. Dr. Maxwell drew up on our board everything that could be and the treatment outlook. It made everything more manageable,” Amanda recalls. She believes that ongoing communication with the medical team and breaking everything down into digestible parts has been the best approach during this journey.
With a team that feels like family, Grayson’s parents have found not only expert medical care but also the emotional support they need to navigate this challenging road. As they continue this journey, they do so with hope, strength, and the comforting knowledge that they are not alone.
