Father, daughter bound by blood disorder

September 28, 2016 | by Stephanie Smith

Ten years ago, Greg Cooper stared out of a hospital room window as his 1-year-old daughter Amanda played outside. It was one of the more difficult days of his treatment for a blood disorder, myelodysplastic syndrome, and Greg remembers a comforting thought crossing his mind as his forehead pressed the window pane: “You know what, it’s me going through this — it’s me and not her.”

Years later, when Amanda was diagnosed with the same rare disease, Greg’s memory of that moment would be tinged with sadness.

Something is wrong with the blood counts

It started when Greg’s wife Joanne took Amanda (who was then 7 years old) to the doctor after she complained about nausea and stomach pain. As part of the visit, the gastroenterologist suggested testing Amanda’s blood. Later, says Greg, “I got a call from Joanne that this doctor said something is wrong with the blood counts.”

Even before it was confirmed, Greg had a strong feeling it was myelodysplastic syndrome. “You talk about a chill,” he added, describing his reaction to problems with Amanda’s blood count. “I felt my blood run cold at that moment.”

After a few painful days spent trying to reconcile something far worse than bad luck, the family found a shred of meaning about what was happening to them. “In a sense it was a blessing to go through it first because then I had some understanding,” says Greg. “I think that got us through, otherwise we might have fallen apart with worry.”

“You know how people say, ‘Everything happens for a reason,’ and you’re like ‘Yeah, right?’” says Joanne. “Well in this case it was true. In a strange way it was good that Greg went through it first. It really did make it easier for her.”

Joanne says Greg’s experience also made it easier to decide where Amanda would get treatment. Following his successful stem cell transplant at City of Hope, “I went on auto pilot,” says Joanne. “I thought, ‘I know what to do. I have to get Amanda to City of Hope. That’s the answer to the problem — just get to City of Hope.’”

‘If Daddy did it, I can’

As Amanda’s turn at treatment came, it was decided that, like her father, she would undergo a transplant. But while that decision was easy, it was difficult breaking the news to Amanda about what lay ahead — especially when it came to talking about the transplant process: “That was hard,” says Joanne. “I started to cry, but Amanda was fine. That’s always her attitude.”

“Her response was, ‘It’s OK, Mommy. Don’t worry about it,'” says Joanne. “'If Daddy did it, I can.'”

While Greg’s transplant at times was difficult, Amanda sailed through hers — most of the time clutching a stuffed animal named “Honey Buns.” In virtually every image of her during treatment, Amanda is beaming.

When asked about her transplant, in which she received stem cells from an unrelated donor, Amanda radiates characteristic positive energy: “I got my bone marrow from someone I didn’t even know and they didn’t know me and it made me feel very important. And very loved.”

Going to be OK

For Greg, the aftermath of overcoming a serious illness has been about a return to a normal life with his family in Henderson, Nevada. However, Amanda’s life post-treatment has been anything but normal. With youthful exuberance, she has embraced the many opportunities that have come her way.

In the three years since receiving her transplant, Amanda has spoken publicly at various events, and on television. What she relishes most is that her experience allows her to counsel and comfort children going through the same thing she did.

“I met a family the other day and their daughter is going through a transplant,” says Amanda. “I told the mom I would talk to the daughter and I told them it was going to be OK.

“I did it, and I’m sure their daughter can do it, too.”

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Learn more about City of Hope's bone marrow and stem cell transplant treatments and myelodysplastic syndromes program. If you are looking for a second opinion or consultation about your treatment, request an appointment online or contact us at 800-826-HOPE. Please visit Making Your First Appointment for more information.
 
 

 

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