DIAGNOSIS: Acute Myeloid Leukemia


July marked the one-year anniversary of his diagnosis, and life hasn’t got any easier; each month brings new challenges. He stays in good spirits but relies on blood and platelet transfusions every couple of days. His care has been moved to Rochester, increasing the family’s travel expenses. This will hopefully have better and faster results with regards to getting a transplant.

Damon was diagnosed with Acute Myeloid Leukemia on July 24, 2021; he was just about to turn five years old. His mom, Carrie, describes him as having “75 personalities; he is headstrong, he fights every situation, has the memory of an elephant and loves to tell jokes and laugh.”

Damon lives in central New York with his mom (Carrie), dad (Brian), eleven-year-old brother (Gabriel), and eight-year-old sister (Heaven). November 2020, the family had moved a short distance. Carrie, after years of changes in employment, had taken her dream job as the manager of an auto shop, and Brian had just started his own painting company. Life was good and felt more settled than it had been before.

In the week before his diagnosis, Damon had some cold symptoms, was lethargic and a bit pale. His parents didn’t think much of it. When Damon went outside and asked to be carried back and started running a high fever all the time, though, Carrie became concerned. Still, she knew she had to go to work the next day.

“We had grand plans for helping our kids out in life, so work was always a priority; I worked a lot,” explained Carrie.

“On Saturday around 1 p.m., Brian brought the kids to work to see me. I remember he brought Wendy’s for lunch. Damon was listless and wanted to be carried. Later at home, he kept crying and was very irritable over things like the dog being near him. I asked if he would take a bath, but he yelled and started whining, then he started hitting me. I went to stand him up, to get him in the bath, and he collapsed. I thought that he was intentionally dropping himself, but his left side stopped moving at all. Immediately I grabbed him, put him in the car and called 911. When the ambulance arrived, we had to wait for the stroke team; they really thought that it was a stroke. They did a bunch of tests and kept asking him if he knew Rubble from Paw Patrol. I watched his sister collapse in tears under the red leaf tree in the yard. At the children’s hospital, they put in an IV and explained that Damon needed a lot of blood, and his heart was enlarged because his blood has been so diluted. Then they did an MRI. At this point, Damon was unresponsive. It was beyond scary.”

Later that day, the doctor told them that Damon had leukemia and that he should have been dead or in a coma. Damon had experienced several health problems since he was born, but never had any doctor told them that those health anomalies could predispose him to cancer.

Damon would be starting chemo immediately and have surgery to insert the port.

“I don't remember much after that besides holding Damon a little bit and talking with Brian. About midnight, I thought Brian was asleep and I finally broke down. I had just released a few tears here and there, but I hadn’t really processed or cried. A nurse came in and listened as I poured out God knows what from my mouth, making no sense, I'm sure. Once I was done, at 2:00 in the morning, after 44 hours of being awake, I crawled on the bottom of Damon's bed and slept for a few hours like his puppy.”
Damon was inpatient all but 22 days from July 24 to December 22. Heaven and Gabriel had to stay with a cousin all summer, and then his grandparents came up from North Carolina to stay; everyone was living in the three-bedroom house. It was very hard for them to be parents again at 70 years of age.

“I have never left his side; the longest I was away from him was eight hours. I left my job, I got FMLA for a little while and after that I got unemployment, although that took a while to come through,” said Carrie. “Brian tried to keep the company going, but it suffered an extreme loss last year with him not there a lot of the time for Damon’s appointments. Even with cutting expenses, we are still unable to pay ourselves regularly. Our septic broke and our two vehicles broke down; we are just thankful that everything waited to go until after we were home, but it’s almost impossible when unexpected problems hit our finances. Our battle is far from over, and every dime helps us keep the focus on Damon and off the fear of losing our livelihood. I'm grateful for so much, but I also look at the long road ahead of us and wonder how we will make it.”

In March, Damon was five days away from starting his bone marrow transplant, but the family was crushed with devastating news. Damon's leukemic cells had increased during the month waiting for his donor and he was no longer eligible except as a "last resort," yet again prolonging his battle.

So, the battle rages on. He's on his ninth round of chemo and is guaranteed one more no matter what. After the two, they will evaluate if they need to go up to the extremely toxic chemo and take the chance of putting a lot of damage into Damon's organs or if they will go to Rochester to do transplant anyway, or if they will jump into another clinical trial. None of the options are at all easy.

July marked the one-year anniversary of his diagnosis, and life hasn’t got any easier; each month brings new challenges. He stays in good spirits but relies on blood and platelet transfusions every couple of days. His care has been moved to Rochester, increasing the family’s travel expenses. This will hopefully have better and faster results with regards to getting a transplant.

“In the beginning, they told us six to nine months was the ‘best case scenario.’ Now we are well over a year and still know once he hits low leukemia levels again there will still be 150 days in transplant,” said Carrie. “The hardest point for me was probably between October and Thanksgiving. Damon was, on the surface, a perfectly healthy, normal child. He was doing a low dose chemo which would normally be outpatient, but there was concern about his neutrophiles. He barely had an immune system. I was locked in the hospital with psychotic five-year-old. They could not get him to sit down. He had insomnia, no visitors were allowed except for Brian. Damon would run up and down screaming all day. He would gather all the nursing students and make them play playdough and dance. If I came home, I would visit the kids for an hour or two. Brian came back and forth as best he could to be with his son and support me all the time trying to provide with the company. The week Damon was diagnosed, I took a huge hit; part of you wants to die, but I sat there trying to look for positives. I had never been in a career that allowed me FMLA. If there was going to be a best time, that was the best time. We took a loan for our minivan and reduced some expenses. We were able to claim the company loss against our income. Those things helped a little.”

“Another mom told me about Pinky Swear, and they paid our mortgage, which allowed me to only pay utilities and a car payment that month. We spent $2,000 in Philadelphia on parking, gas, food, and everything we needed while we were there. At that point, I reached out to all the organizations that I was aware of. It helps a lot. The last thing anyone should have to worry about when fighting for their son’s health is money. I would sell and give up everything to cure our son, but why should we have to. If I was diagnosed with cancer as an adult, I would automatically get an income. With Damon’s diagnosis, they take into account our income and our house. I have to tell them about every donation. The only thing we get is food stamps. We have spent out entire lives helping people. We have had several homeless people live with us. We strive off making others feel better. Us cancer moms, we lose everybody. It’s not even about the money. We need support. People don’t understand because he looks so good, I think, ‘It doesn’t matter how he looks, he is going to die unless he gets the treatment he needs.’ I have been through the rage part; I feel like hitting someone or being hit by someone myself because that will feel better than what I am going through. The kids’ bad traits get amplified because they are not getting cared for like they used to be; life’s rules suddenly got changed and it’s hard on them. I get mad that there is very little awareness of childhood cancer in comparison to breast cancer for example. The clock tower glows pink in October but didn’t light up gold in September, everything feels so unfair.”

Pinky Swear Foundation hopes that Damon can get the transplant he so badly needs and that this family, at some point, can recover. But the road will continue to be very long.

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