anaplastic large cell lymphoma was no match for a sister's stem cells

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.

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.

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.

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. 

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.

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?

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.

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. 

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.’

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.

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 .

emma jones is a multimedia editor with healthing. you can reach her at  emjones@postmedia.com or on twitter @jonesyjourn

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anaplastic large cell lymphoma was no match for a sister's stem cells

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