Rocanville rallies around Haylee Johnson and her family
Johnson hopes her battle with leukemia encourages people to donate stem cells and blood
March 5, 2024, 1:11 pm
Kara Kinna
At age 28, Haylee Johnson is battling for her life, but it’s a battle that she can fight knowing that her community has her back.
A fundraiser is planned in Rocanville for Johnson for April 6 to help Haylee and her family absorb some of the costs of an over-two-year-long battle with Leukemia that started in October 2022, and that sees Haylee currently in hospital for her second stem-cell transplant.
Haylee says this battle has turned her life upside down.
“October 6, 2022 is when I found out that something was wrong with my blood and then the official diagnosis was October 8 of 2022,” she says. “And how we found out was I had a miscarriage and I had to have a D&C because my body wasn’t recognizing that the baby was gone. With that, I had to get the blood work, and my blood work was terrible. So then I went to Regina and I had all the tests done, bone marrow biopsy, and then they found out that I had AML. So that’s how it all started.
“It is a leukemia. It’s a blood cancer. Acute Myeloid Leukemia is the actual name but they say AML for short.”
Haylee started into chemo treatments once she got the diagnosis.
“I had an induction round, which was very hard because I had just had the D&C on October 6. Then on October 8 we started chemo and I don’t even know how many blood transfusions because I was bleeding. Also that same month I went septic because the D&C was a failed D&C. So then I had to have a second D&C. I almost died, because the chemo, it wipes out everything in your blood. It wipes out your immune system so I had nothing to fight anything. It was really scary. I was on a lot of big drugs.
“Then I had my consolidation round, which was after the induction round, in Regina. By then,they knew that I needed a transplant—a bone marrow or stem cell transplant. I only have one sibling, and they tested my sister, because it’s best to have a sibling as a donor, because you accept it better. I was lucky that my sister was a 100 per cent match. It’s very rare that we were the same blood type, so I was very grateful.
“Then in January of 2023 I had my stem cell transplant so I was in Saskatoon until mid-April. It’s quite the process. I was in hospital for the transplant for 44 days and then I had to get an apartment for the rest of that time.
“After the consolidation they said I was in remission but because I have a mutation in my blood I needed the transplant because the cancer would just come back. So the hope was with the transplant that it would erase the mutation and I would take on my sister’s blood traits. But I have relapsed now.”
Haylee says the relapse is serious.
“It’s very aggressive. My mutation is really rare and there is not a lot of information on it. My doctor is talking to clinics in the United States, big hospitals in the States, trying to gain more information on it just to give me a bit more of a fighting chance.
“So I had the transplant and I was good for seven months and then I started getting these bumps, which are called leukemia cutis, which is where the leukemia went into my skin and that’s how I relapsed. The leukemia went from my bone marrow and moved into my skin. So the transplant failed.
“So I have had four rounds of chemo at home and I had something called a DLI, which is Donor Lymphocytes Infusion, in which my sister donated more cells of herself to me to try and get my body to recognize that this is cancer. But that also failed. So now I’ve actually just finished a second round of induction chemo. Induction chemos are very intense. They are very harsh. I’m actually in the hospital right now. I just finished that and the hope is that the end of March or beginning of April I’ll be having a second transplant.”
Haylee says the entire battle has been hard on her and her family, but she continues to hold out hope.
“It’s been a total change,” she says. “I can’t work and now I’m going to be off again for another two years because after a transplant you can’t do anything since you’re so immune compromised. My doctor says, ‘You are a newborn baby.’ That’s what he calls me. He said, ‘You have no immune system.’ I had to take all of my childhood shots again, I can’t garden, I can’t be around sick people at all because if I get sick I would most likely end up in ICU. Just having to live in Saskatoon away from my family—I can’t see my kids. I have two young boys and when I had the first transplant I couldn’t see them for two months. Then finally he said that I could see them and even then they had to be really careful around me.
“So I’m going to be going through all of that again. It’s a big life adjustment and now that I’m here I never knew what people went through. It is so hard, the transplant, and you’re so sick, just so, so, so sick.
“I never realized how important blood products are. I always tell my friends, ‘Go donate blood because you are literally saving someone’s life.’ I’ve had in the hundreds of blood transfusions and each one of those saved my life, because if I didn’t have that, I wouldn’t be here.
“Same with the Stem Cell Registry, it’s a 20-second swab on your cheek to be on the registry between ages 17-35 I believe for the Canadian registry.
“You can talk to your doctor or you can also go onto the website Canadian Blood Services and there’s a thing where you can sign up and they’ll send you a swab, you just swab your cheek and then send it back to them. I think my mother-in-law is trying to set up, at the benefit there, a stem cell drive. She’s trying to get Blood Canada to come out and if people are willing to, to swab their cheeks. It really makes a difference. I was talking to my doctor and there’s not a lot of people on the registry from Canada.”
Haylee is away from home often due to her treatments and says the fundraiser for her and her family will help a lot.
“I’ve been away from home a lot for the last two years and there are so many appointments and different things,” she says. “About twice a month I’d have to go either to Regina or Saskatoon to see my doctors. Just with the cost of gas and driving and hotels, it’s expensive. One thing with transplant is that you get very tired. So with the hotels it’s very expensive. And also medication. You’re on tons of medication after transplant. So it adds up.”
Haylee says the community support that she and her family have received have been amazing. The family moved to Rocaville from the Carrot River and Arborfield area in northern Saskatchewan in 2020.
“Oh, it’s been amazing,” she says. “When we first moved to Rocanville I was a little bit nervous because it’s pretty far from home, from where I originally grew up, but the community has been great. They’ve helped with our kids. Especially when I first got diagnosed—your life just gets flipped upside down, you’re trying to figure things out, how are we going to make this work? And get the kids to school on time. We have a dog also. But our neighbours and everyone reached out. ‘We’ll help you. We’ll watch the kids or the dog.’ They brought meals to my husband so he didn’t have to cook.
“It’s just been amazing with all of the support and the messages like, ‘Keep your spirits up, you’ve got this.’ It just reminds you that you’re not alone because it can be a very lonely thing, you know? Especially AML because it’s usually older people that get this. Right now I’m the youngest person in hospital for this by 30 years probably and you just feel a little excluded because it’s not the same.”
Haylee says the entire ordeal has been hard on her family, especially knowing what’s coming with the second transplant that she is having. She says she has about a 30 per cent chance of survival.
“Especially this time around because my kids understand now that mom’s going to be away again. It’s been quite hard on them and there’s been a lot of tears,” she says.
“It’s a little bit more risky having the second transplant. I have about a 30 per cent chance of survival for the transplant. But you know, I told my husband—because my husband is pretty devastated, and I was too—but I said that some people go into the office and they get told, ‘We’ve got nothing for you.’ Then you have to go home and basically wait. So I said, ‘At least we still have a chance.’ My doctors are amazing. I am very lucky that they’ve all been great.
“I went through transplant once, so I kind of know what to expect this time around, and my doctor did say that I’m very lucky—other than the cancer, I am a fairly healthy person. I couldn’t imagine if I wasn’t. It would be so hard, but I’m lucky in that sense. I’m lucky that I’m young.
“I can fight it a little bit harder. I think about the older people in here and I don’t know how they do it, because it’s rough. You’re so sick. So I’m lucky in that sense, I guess, but I’m too young to be going through this and it’s challenging.”
Haylee says, if anything, she hopes her battle inspires people to donate blood and stem cells, or to donate to organizations that help with cancer treatments.
“I hope it just brings awareness to what people go through and maybe people will want to donate blood and stem cells. Or even help Telemiracle. They help out a lot of people in my position.”
The fundraiser is set for Saturday, April 6 at the Nutrien Rocanville Hall. Doors open at 4:30 pm and dinner is served at 5 followed by a dance from 7:30 pm to midnight.There will also be a silent auction, a live pie auction, door prizes, and designated driver services. Tickets for the fundraiser can be purchased in Rocanville at Manetain Liquor Store, Hag’s Hideaway, TD Bank, and Rocanville Remedial Massage, and in Moosomin at Studio M, Shelly’s Kneedles and Knots, or by calling Kayla at 250-580-5520 or Nicole at 639-997-4644.
