Last year in March we were all reeling from Ollie relapsing in his brain and going blind a few weeks earlier, getting into remission, being told that he'd need a stem cell transplant, finding out we had three perfect matches on the registry only to be told that because of COVID-19 just arriving we'd need to use Abby's half match stem cells instead and moving to and settling in Toronto to ready for stem cell transplant. And all while navigating the unknown of a pandemic.
This day last year was one of the most emotional of my entire life. It's right up there with my wedding day and Abby and Ollie's births in terms of most memorable and beautiful. For on this day, March 31st, 2020, our then 11-year old donated lifesaving stem cells to her 7-year old brother after enduring 5 days of painful G-CSF injections to make that possible for him.
If you've been following along, you'll recall that we were first supposed to use one of the three perfect matches on the international stem cell registry. Unfortunately COVID-19 hit Canada just as we were readying to get Ollie to transplant and because of issues related to flights, timing, and COVID unknowns, we were told that even though Abby was only a half match, she was still the best choice.
At the time we didn't know much about partial matches or their effectiveness except that only 25% of all families had at least a partial related match. As his sibling, Abby only had a 50% chance of even being a half match for him. Last year her being a half match did not seem like our best chance at long term survival for Ollie, but as Abby told us then, her stem cells are overachievers. 😆 Since the beginning of the pandemic the medical world has learned a lot more about how to do successful haploidentical or half match transplants.
So many times over the past year as things were so hard on Ollie's journey to wellness I have tried to remember the strangely beautiful by-products of cancer. Abby's S-Hero day was one of the best. I think back to those 6 hours at Sick Kids Hospital in the Dialysis Unit where I watched her maturely and selflessly allow every drop of blood in her body to go in and out of her while cycling through the dialysis machine that collected her stem cells for her brother. Stem cells that would give him her DNA...the one thing that differentiates her from everyone else on the planet and that she'll now forever have to share with him.
I know she was scared...I was terrified for her. Not so much of her donating - which she did with incredible grace - but of her donating and despite her desire and sacrifice to save him, it not working for him. That prevailing fear has stayed with me for 365 days through:
- the anguish of his second and so unexpected (by optimistic us anyways) relapse just 8 days before he was supposed to get her cells on April 8, 2020,
- the uncertainty of radiation and a new untested drug called Lorlatinib (which proved to be a miraculous combination),
- his actual stem cell transplant last summer, and
- his 254 days of recovery since.
I feared his transplant not working not just because it meant we'd be battling cancer again, but also because I feared Abby having to live with the agony of not being able to save him after all she'd sacrificed. I worried about losing my son AND potentially losing my daughter to mental health issues if her stem cells didn't work. Thank goodness God and science were with us and Ollie has remained well with NED (cancer speak for No Evidence of Disease).
Since her stem cell donation, Abby and I have become public advocates of stem cell swabbing and donating, doing many interviews and writing articles whenever the opportunity presents itself. We know of at least a few young people who have gotten their swab kits from Canadian Blood Services and are now on the registry because they were inspired by Abby and Ollie. This is where I also want to remind anyone reading that if they're on the registry (or knows anyone who is), don't forget to ensure that Canadian Blood Services has up to date contact information to reach you if you are a match for someone! Today more than half of all potential donors can't even be reached! Also, swabbing clinics can't be held due to COVID and there have been 70% less people joining the registry over the past year. We NEED healthy people between 17 and 35 to click the link above to help us save more Ollies. Not everyone has Abby in their family or a match on the registry right now and we don't ever want to hear about a Canadian dying because they couldn't get a match. Not on our watch. Right now we need Canadians to help other Canadians as they're focusing on using Canadian donors until COVID is over and there aren't enough on the list.
We've also heard from other families who found this blog when searching for stem cell transplant info who have told us how grateful they are that we have shared this journey and how it helped to assuage their own fears about their children's stem cell transplants. To-date we know three of these families have gone through their own successful transplants and their children remain well. These things make the public sharing of our private emotions, challenges and fears worth it. My grandma (who understood cancer too well having helped my grandpa to fight it three times during their 41 year marriage before he passed) always said if you can help someone, you should. I know she'd be proud of how we've handled it all, held on to hope and our belief in God's goodness and tried to pay it forward to help others.
Today we're all well physically and getting better mentally slowly. The transplant and Abby's donation have changed all of us in ways that are sometimes hard to explain. Mostly in the way that we are connected to each other as a family. Like our bond is ironclad and unbreakable now. Like somehow because of the transplant we share the same heart.
Abby's changed so much in the last year and it's hard to tell what's attributable to cancer, stem cell transplant, pandemic and just normal growing up. I'm sometimes hard on my girl in terms of expectations because I know better than anyone what she truly is capable of and what kindness she has within her. The other day she was feeling down about online learning and her social life (or lack thereof due to COVID) and said what had she really accomplished this year? I looked at her incredulously and told her, "What have you NOT accomplished this year? Donating stem cells to save your brothers life, becoming a nationally recognized advocate and writer for stem cell donation and empathy during a global pandemic, got your first paying job at 12 as a writer, were a good friend, sister and daughter and still got decent grades while doing online learning to keep your brother safe...you're right...what have you been doing wasting your life like that?" 😂
I will never forget the overwhelming love and gratitude that I felt for her on this day last year. It sustained me in the weeks after as so many unexpected and hard things happened before he finally got her beautiful cells on July 20, 2020. S-HERO always.
* Note: Abby gets two S-Hero days - Part 1 now because this is the anniversary of her actual donation and Part 2 in July on Ollie's Re-birthday as that is the day that she completed her S-Hero mission. More to come!
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