What it feels like: My son has a rare form of leukemia

Xavier Pesito was just three years old when his frequent fevers and eye infections were diagnosed as a rare form of blood cancer.

Emma Jones 8 minute read June 8, 2021

Xavier was diagnosed with Juvenile myelomonocytic leukemia. Supplied

Xavier Pesito was just three years old when his frequent fevers and eye infections were diagnosed as a rare form of blood cancer. His mother, Cynthia Ngo, was told that chemo would only do so much – Xavier would need a stem cell transplant.

Juvenile myelomonocytic leukemia (JMML) is a rare form of childhood leukemia that predominately affects children under the age of four, according to the National Organization for Rare Diseases. In JMML, cells called monocytes grow uncontrolled in the bone marrow and begin to crowd out the healthy cells.

When Healthing.ca spoke to Cynthia, she was in the hospital room with Xavier who had just had a stem cell transplant a few days earlier.

How long did it take to find a match for him?

It’s been officially three months since he was diagnosed.

What was the Xavier diagnosed with?

He was diagnosed with a rare type of child cancer, leukemia, called JMML. Not a lot of kids who have leukemia have this type, [in Canada] less than a handful of children in every three to four years have JMML. There are very little treatment plans because it’s a very unpredictable type of leukemia.

He was experiencing a lot of symptoms. He had fever, then he had bloating in his stomach. My parents who watch my kids for me sometimes, they would be like, something’s wrong. Why is he so bloated? I thought it was because he just had a meal or a snack. Then he got fevers, almost every month he was getting a fever for about a week. I would take him into the pediatrician, and they thought it was just a fever he’s having and nothing’s wrong, give him Tylenol and it would be fine.

Then it progressed to an eye infection. His eyes kept swelling up, like every other week. He’d get antibiotics for it, it would go back down, and then it would come back like the next week. It was crazy. They thought he had a blocked eye duct, but that wasn’t the case. He was fine since he was a baby, a newborn. He also didn’t show signs of blocked eye duct where he couldn’t cry, or the tears wouldn’t come out, or it wouldn’t drain into his eyes. But when he started to get those eye infections it was really bad.

And then next thing it was the holidays, Christmas. He just turned three. I brought him into [the emergency room] because he’s got a fever again. Then the fever went away and they didn’t think anything of it. New Year’s came and my other little one, Lily, had her annual pediatrician appointment and so did Xavier. That day he was looking very anemic and when the pediatrician saw him, he was like, ‘You need to go to Sick Kids right now. I’m thinking he could need a blood transfusion.’ We went straight to Sick Kids Hospital, they did his blood work and few hours later they came back to me and told me that he had blood cancer.

I had no words. I was in shock. I was not expecting that kind of news. I was just expecting a blood transfusion.

The Pesito-Ngo family. Ngo

How do you cope with that sort of news?

There’s no time to cope. I’ve had my days where I’ve cried it out and picked myself up the next day. I have to keep going for the kids and just be strong for him. Because he’ll sense it, that something’s wrong. Me and my husband had to stay strong. But at night we’d cry talking about it. With COVID, too, you can’t really cope because we didn’t have other family around to hug and cry with. That made everything worse.

What was the treatment like for Xavier’s leukemia?

Xavier’s doctor said that the best way or the answer to cure him possibly is a transplant and chemo. While we were waiting for a final decision on what is the ultimate treatment plan for him, he was on temporary chemo three months before we finally got the transplant.

He has gotten his transplant and he’s on a bunch of medications now to help him with his recovery. They’ve given me a 50/50 likelihood if this is going to be successful or not, so now we just got to wait and see if the hard part of it is over yet. This is only the middle of it, this is just another step.

If this transplant is successful, would that mean no more chemo?

They have to see how his body’s doing. Like, if the cells have fully recovered, if the cancer cells are not growing anymore, then that’s when they’ll decide whether or not he needs any more medications and he could live his life freely from all those from all the meds.

Was the stem cell transplant from a donation or from a family member?

So, family is most likely not going to be a match. Even my little one, Lily, was just 25 per cent [matched]. So they’ve had to rely on finding a donor and what they found for him was umbilical cord blood. It was already in the donation bank and they had to make sure it was enough of a match; nothing was 100 per cent. It was just a little off from 100 per cent. It would have taken two to three months to find an actual person donor for him, as opposed to a blood cord that was already in the bank. And because of the rarity of his JMML, they had to act fast and they decided that the cord was the best option for him.

What was it like when you heard there was a match for Xavier?

Oh, I was relieved. Yeah, I cried because I was so happy. This was the answer we’d been waiting for. We were so uncertain for so long, felt lost for so long. It was like, what are we going to do if there’s no donor for him? No one to match him and no one’s to save his life? It was crazy enough to know that we couldn’t even save his life if we wanted to and we had to rely on an outside source.

What was the process like Xavier getting the transplant?

He got one full week of his chemo, like intense chemotherapy and medications alongside of it to prevent a lot of things from happening during that process. It knocks out all the cancer cells in his body, so when transplant day came, which is one full week, he got it through an IV. So, the new stem cells just flow through the IV into his body and his body will take some time to create new healthy cells. Hopefully during this time while he recovers, his body doesn’t reject those new cells. So, there’s a lot of medications he’s taken to make sure that that doesn’t happen and how much technology has advanced is amazing.

A mom and son smile widely for the camera.

Cynthia Ngo with her son Xavier Ngo

When he went in for chemo, what was that like?

When he was on his temporary chemo, before getting the transplant, he was at home and back and forth at the hospital for follow ups and everything. But it was intense, he was not himself. He didn’t eat. He was tired. He was very nauseous. And then when it led up to the time to be admitted for transplant, the first week of intense chemo was rough. It was scary to see him go through it. He’s been so strong throughout it and he’s given me hope that he can fight through this.


 

Through this process, I know how important it is to encourage people to donate and become donors. Going back to this process, and how important it is for people, especially the younger generation and even in the Asian community. Because I feel like it is a little bit taboo to talk about becoming a donor or donating anything. It is really important because we need to be ahead of the game for the children with becoming donors and donating. We need to get that message out there. If it wasn’t for a cord that was already donated and in the bank for my son, I don’t know how long we would have waited for.

Especially because my son is mixed race Asian, it’s even harder to find a match. Depending on ethnicity, that that will determine if they are a match to him or not. So the importance in the mixed race and Asian community and all the other communities out there, we need to encourage them to donate, become donors, give blood for everyone in need. There’s a big lack of donors from the Asian community right now. And to hear that, I was shocked, because I didn’t think that would be the case. We just need to bring more awareness.

 

Readers interested in learning more about donating stem cells can also visit the Stem Cell Club and the Canadian Blood Services.

 

emjones@postmedia.com@jonesyjourn

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