anaplastic large cell lymphoma was no match for a sister's stem cells
12 minute read
the acosta-pickering family. from left-right: mario, abby, oliver, dawn, and chewbacca their cat. oliver's dog, hope, sits in front. supplied
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oliver “ollie” acosta-pickering was only seven years old when his older sister, abby, who was ten, noticed a lump developing on his neck. after weeks of tests and hospital visits, the acosta-pickering family was given a terrifying diagnosis: anaplastic large cell lymphoma (alcl).
alcl is a type of non-hodgkin lymphoma, a cancer that develops in the lymph system of the body, that primarily affects young adults and children. alcl is rare, to the point that it’s difficult to get verified statistics on the diagnosis rate, but according to the uk’s lymphoma action, only 200 people are diagnosed with alcl in the uk each year.
chemotherapy and radiation are the most common treatments for alcl, but if the tumours return, medical teams may opt for stem cell transplants. in a stem cell transplant, the cells in the patient’s bone marrow are killed through intensive chemotherapy or radiation, after which a donation of stem cells is meant to replace the cells that are prone to becoming cancerous with healthy blood cells.
that’s what happened to ollie last spring. after a double relapse in his central nervous system, his sister abby, now 12, donated stem cells.
when dawn pickering, ollie’s mom, answers the phone, life at the acosta-pickering house in ottawa is in full swing. ollie and abby are both at home and on their way outside to play with their dad, while the sounds of a dog hanging around — likely ollie’s service dog hope — make their way through the phone call. ollie is more than 250 days past his stem cell transplant, and getting stronger every day.
what led to oliver’s diagnosis?
when ollie was seven, he had a little bump on his neck, which we thought was just a sunburn or something because it was kind of blistering. it started to grow, and we had many, many tests done. it turned out to be anaplastic large cell lymphoma. it was quite a shock to us because he hadn’t had any other symptoms. we have pictures of him literally climbing walls at one of those trampoline places the week before he was diagnosed.
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how did abby become her brother’s donor?
abby was never supposed to be ollie’s donor. when we found out that he had relapsed and that a stem cell transplant was going to be necessary, they sent us as a family to [get tested to see if we were potential donors]. we were all tested while ollie was lying in the pediatric intensive care unit because he had gone blind and was very, very sick at that point.
what happens is they match up your dna with his dna to identify who would be the best match. in the case of our family — strangely, because this almost never happens — all three of us were at least a half match, a five out of 10 match. that’s okay, but not great. you’re looking for as close as possible to a 10 out of 10. so we started to push for [other] people to get tested, to find a match. we had been told that because we’re caucasian there was a good chance that there would likely be at least one match for him, but there was no guarantee.
when we found three perfect matches for oliver, we felt like we had won the lottery. but then, all of a sudden, covid hit and that turned everything upside down. oliver had been at cheo (the children’s hospital of eastern ontario) for almost 60 days when i got a call from sick kids hospital [in toronto]. they were concerned that they couldn’t guarantee they could get the donation, and then get it to ollie in time, and they were also worried about what would happen if one of the donors had covid unknowingly. we had no idea what that impact would be on ollie. would it kill him? so, to play the safe game, they decided to go with the donor’s stem cells that were most likely to be accepted by ollie’s body, and that was abby’s.
i can vividly remember being on the phone with them and just crying, thinking, ‘how will we survive this? how will he survive?’ they assured me that with the latest anti-rejection drugs, we’re in a much better position to do partial matches than we have been in the past. also, the fact that abby is a related donor meant that oliver was less likely to have other side effects like graft-versus-host disease and other things that can happen when the body tries to reject the stem cells.
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we then had to go back to our then 11-year-old daughter and say, ‘complete change of plans. we never wanted to have to ask you to do this, but it’s going to be you.’ and she said, ‘i always thought it would be.’ and so, during march break, during the first covid lockdown, she and i drove to sick kids in toronto to make sure that she was well enough to be the donor, and also for them to ensure that we weren’t coercing her in any way to make the donation.
abby and i did that while my husband, mario, stayed back at cheo with ollie. oliver was just about to start his radiation and chemo to make room for the new stem cells when he started getting terrible headaches and fevers. it turned out he was relapsing — he had only been in remission for three weeks and was relapsing again. abby’s donation was frozen and they told us that whenever oliver was back in remission they could give it to him. so then the question was, how we get him back in remission, because the preliminary chemo treatment obviously didn’t work. and the interstitial chemo, which he got injected into his spine 22 times to try and get rid of that lymphoma in his brain clearly didn’t keep it out. we tried some different drugs as well, but that didn’t work.
[the doctors told me] that maybe we shouldn’t treat my son anymore because we have very few options with a double relapse in his central nervous system. imagine being the parent sitting in that room and having that conversation in the middle of covid, when we’ve moved our entire family to toronto to try and save our son. i went a little mama bear on them and said, ‘no, that’s just not an option. that’s not what we’re doing. this kid’s been through so much already and now you want to quit? we’re not quitting. that’s not what we’re doing, we are finding a new plan.’
our oncology team was pretty incredible, and they had anticipated this possibility after his first relapse. they applied to get access to a brand new drug on compassionate grounds that was just finished in clinical trials. it was known to be effective for similar types of cancers. so, we came back to ottawa at the end of april, and ollie did 13 sessions of brain and spine radiation, and then took this new drug. thankfully, by the end of june, he was back in remission. so off we went, back to toronto, to get the stem cell transplant. in total, we spent five months in toronto over the course of his two attempts at a stem cell transplant — each time having to basically uproot the entire family and rent a condo and do the tag team parenting between our two children.
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how was ollie after the donation?
miraculously, it all worked out and ollie got abby’s beautiful, amazing stem cells on the 20th of july. then he had to basically learn how to eat again, because he had been on liquid nutrition for a couple of months. chemo and radiation often leaves people with painful sores — mucositis — in the mouth, throat and down the esophagus. nothing tastes or feels good when you put it in your mouth. by day 38, he was eating enough, and he came back to the condo with us — we were there less than three weeks before it was decided he could go back to ottawa.
we were in ottawa in september and the kids started online learning. ollie was still in a wheelchair, still pretty weak. he had also gone blind back in january of the previous year so he now had to learn braille and how to walk with a blind cane — all of these incredible things. he’s been doing that since september and he’s doing phenomenally well. his 100-day scan was all clear; they did all the scans at my insistence, and he is looking great.
to have your son lose his sight must have been very difficult.
it’s really hard for people to process how much we’ve been through in a year and a half. we’re all in therapy and trying to get well and process. you have a lot of stuff to process after, because you don’t have a lot of time or energy to process when it’s happening — every ounce of energy that you have goes into just trying to keep him well.
when ollie went blind back at the end of january, the neurologists, ophthalmologists and oncologists said that they didn’t know if he’d be blind permanently or temporarily, because this was not normal. my husband and i looked at each other, like, ‘yeah, the blindness really doesn’t matter.’ it’s not that it doesn’t matter, but we didn’t want to focus our energy on that. the blindness we can deal with; it’s not the worst thing that could happen to him, it’s not the worst thing that could happen to our family. i said to my husband after, could you imagine six months ago that we would have said blindness wasn’t the worst thing that could happen to our family?
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do you ever look back and wonder how you ever made it through?
i’ve talked to so many people who have never been through cancer like this, who say, ‘i don’t know how you did it.’ but you just do, right? there’s no other option; my kid was dying. you just have to be there and fight like hell to save them.
our oncologist was pretty phenomenal. on ollie’s first day of diagnosis, she sat us down and said, ‘listen, here’s the thing. i can give him any amount of drugs, but none of those drugs will work if he doesn’t believe that he’s going to get well. you cannot let go of your hope.’
so many things are a blur about that day and the weeks after, but my beacon the entire time we went through all of this was: i can’t lose my hope. even when things seemed really bad, we had to try and find a little sliver of light that said, ‘you can get through this,’ and that ‘he was going to make it.’
my husband and i certainly had moments where we faltered and wondered if we were going to make it. we’d just remind each other that we’re not letting go of hope. we also had such an incredible outpouring of support from our community, the kids’ school, our church, and just so many friends and family from afar.
what was it like for abby?
abby had to have five injections and a couple rounds of bloodwork to make sure everything was okay, before and after the transplant, and then there were hours on dialysis. at one point after after six hours on the machine, i asked her what it was like, and she said that it actually was much easier than she thought it was going to be.
only 25 per cent of all families have even a partial match in their family. so, we were blessed. not everyone has an abby. especially with covid, it’s essential that we increase the canadian registry so that there are more canadians who can donate and help during this time.
it’s also not just stem cells. when anyone has cancer treatment, there are multiple blood transfusions: they need plasma, they need antibodies. all of these things are made possible by donors who say, ‘no big deal. i can give an hour today and go in and [donate].’ the most emotional times for me were when i was sitting in a room with my son, and they were hanging a pint of blood, and i would look at it and think how incredibly grateful i was that somebody had gone in and done this donation for my child.
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i remember when we had oliver’s first chimerism test — it’s basically a test after a donation that looks at the stem cells that have been grafted to see how much of the recipient’s dna is still present versus the donor’s dna. i had asked the doctor what they were expecting to see, and he said they were hoping there would be about 90 per cent of the donor stem cells present in the recipient body. so i went back to the rented condo to be with my daughter, and i told her about the test, and she said, ‘well, i’m pretty sure that i can do better than that. i think my cells are overachievers.’
a little less than two weeks later we got the results and the doctor came in — he was a resident and i don’t think he’d ever delivered this news before, because he was awfully excited. it turns out the test results were 100 per cent grafted. oliver and i were shocked. we called my husband and my daughter, and mario was having a really hard time processing what we were telling him, but abby was getting it and she was dancing around in the background, making noise and screaming and crying. she was actually crying tears of joy, which she’s never done before.
and ollie. he has been through much at such a young age.
my son, he is so determined. and there is nothing that can stop him. he was a huge skateboarder before and he hasn’t been on a skateboard in the last two years, but he’s done nothing but talk about skateboarding again. we’ve always said to him, you can try anything again, but you might have to modify how you do it. he got a skateboard this past weekend and started horsing around on it. of course, the mom in me is like, ‘be careful!’ but he got back on and he wasn’t afraid. it’s about determination and perseverance and all those things.
you really don’t realize how strong you are until you have to be. his sister’s incredible stem cells have allowed him to be in this place and have this opportunity to try it all again. kids have this incredible way of getting through with such resilience. they just seem to find a way to make it through.
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read more about oliver’s incredible story at ollie’s bump in the road. those interested in learning more about donating stem cells can also visit the stem cell club and the canadian blood services.
what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn
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