Sister S-HERO Day (Part 1)

In my wildest dreams a year ago I did not imagine what we'd survive to get to today. 

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!

Racing Lives, Hearts and Go Karts

Our family always seemed to be racing somewhere before cancer. As much as we tried to keep things manageable in terms of work, school, lessons and daily activities, I never felt like we had enough time to just be. To be together, be happy, be mindful, be present. I think COVID-19 has made a lot of families realize that their insane day to day pace was not the greatest for their family. We started learning this about a year ago as the kids were going back to school, we were working (I was actually in full time French class for work) and we were trying to figure out what that darn bump on Ollie's neck was. The stress of it all was unbearable. 

You'd think I'd feel more stressed now after my son had cancer for the last year and almost died, but honestly I was more stressed then, knowing something was wrong and feeling like there was never enough time to figure it out quickly and work our life around it. Soon it became our life and everything else was unimportant. We worked the rest of our life around our family and around cancer. Furthermore, COVID-19 took away the need and really the desire to race anywhere. 

I've been thinking about this because we took Ollie Go Karting last weekend. We wanted to show Ollie that despite COVID-19 and him being immuno-compromised, we can still have (safe) fun. We called ahead to the Centennial Mini-Indy to verify how busy it was and ensure we could get a side by side racer so that our blind Mario Andretti could really feel that he was in the driver's seat and not just a little kid riding with their parent. The staff there were amazing and so kind. They accommodated Ollie's every need from extra care to sanitize things to more time to get in and out of the kart. We used a ton of surface and hand sanitizer and we were off to the races! 

I was behind the boys and was able to watch Ollie spinning that wheel like his life depended on it. When I got close I heard Mario yelling, "LEFT! LEFT! RIGHT! STRAIGHT!" at each bend in the road while Ollie either yelled that his dad was horrible at giving directions or just laughed out loud. At one point I slowed right down to take a picture of them and to wipe my eyes, because I was so happy to see him just being a normal kid that my eyes were leaking. 😭

 

The adrenaline of it was a great release for all of us and a reminder of how many bends and bumps in the road we've had, but gotten around. It also brought to mind the rat race that was our life before cancer. I recalled how the constant adrenaline of running around pre-cancer felt, how the adrenaline from fear during cancer felt and the incredible contrast of our very calm life now as we simply live and heal. I think the only race I want to be in from now on, though, is on the Go Kart track.

Ollie has been wanting to play a lot and frankly, it's not something I'm always great at unless we're at an amusement park, so I brought in some help with games like "Don't Step In It". This is a great equalizer for Ollie because you wear a blindfold (or Dad and I did since he's already blind) and try not to step in poop-shaped playdough. So we're all blind and it has poop in it. Every 8-year old boy's idea of fun! 

We also bought a Hot Wheels track where you launch cars and try to jump them into a scale at the end. Ollie is highly competitive and loves stuff like this. It also gets him down on the floor and moving his body up and down with his own strength, which he couldn't do for the 5 months before transplant!

We've finally got his sleep back on track! Not allowing him to have long naps during the day (1-2 hours max if he needs it, but often he doesn't anymore!) has helped him to be tired by or before his 9 pm meds. He's then sleeping through the night and waking about 7 or 8 am! This has made a world of difference for all of us. He still loves us to make an "Ollie sandwich" when he's falling sleep, though! 😄

He's doing amazingly well. So sometimes it feels wrong. How can things be going so well for us when the past year has so often gone wrong and atypically?! Unfortunately because you've come to expect it and are likely suffering from post traumatic stress disorder (PTSD), you're still on high alert for trouble, even though you are constantly trying to convince yourself to calm down and not overreact. 

For example, two weeks ago before Abby left for Ottawa, she pointed out what looked like a mosquito bite or a pimple on the back of his head. This is exactly how Ollie's bump on his neck that turned out to be Anaplastic Large Cell Lymphoma began. I reassured her that it was only a pimple and tried to forget about it, but my eyes and my hand have been constantly drawn to it, wondering, worrying. Last weekend it suddenly looked bigger and very red. I panicked and consulted my expert ALCL mama friends. They tried to reassure me that it was likely nothing, but both told me to contact the doctor to ease my mind. I talked to Mario about it and stressed him out, too. I sent a message to the bone marrow transplant doctors, asking for a scan this week to rule out it. The doctor promised we'd talk about it on Tuesday at Ollie's check in. I prayed so hard again. Please don't let the lymphoma be back!! By Tuesday it was reduced and almost gone. Just a pimple as his hair is growing back and sometimes clogging follicles.

 He's also had some eye irritation and sometimes pain in the past few days. It would be very easy to leap to the conclusion that he had lymphoma in his brain again given we've seen this twice already, but when we calmed Ollie down and tried flushing his eye out, we realized his eyelashes (that fell out after radiation and chemo pre-transplant) are growing back in and their stubbiness is poking his eyeball and irritating it. 

He's also had a loose tooth for weeks, but in hospital post-transplant they told him not to play with it as they were worried with his platelets low that if he pulled it out it wouldn't clot easily and he could have a hard time stopping the bleeding. So he left it, but it was becoming really annoying to him. On the weekend he decided to play with it and kept asking if he could pull it out. Even though his platelets and blood counts are way up and actually normal, we didn't know what would happen if he did pull it out. He kept pushing it with his tongue and finally popped it right out. A bit of gauze in his mouth for a few minutes showed only a very tiny amount of blood and it clotted in mere minutes. Normal. Not cause for alarm or stress at all.

We have to take every little thing seriously, without overreacting, but I am struggling to balance my emotional reaction with my rationality sometimes. So I'm going to see a psychologist virtually to help me deal with what I suspect is PTSD. There's no shame in it because I have proven how strong I am over the last year to myself and now I need to make sure I've worked through all of it so I can keep moving forward without a constant sense of fear, dread or escalated alarm. As I told Mario and Ollie when we went Go Karting and told Abby every time we went out somewhere in Toronto, we have to LIVE. We've fought so hard to save his life and now we all have to enjoy living life together.

Ollie wants to live. He's interested in doing and trying everything. He's finding new skills and strengths (he can balance almost anything on his head! 😄).

He asked for a chess set and I ran around downtown Toronto trying to find one on Labour Day. He played against Daddy, telling me where to move after we told him where Daddy's pieces were and where his were. It was amazing to see what he could picture and keep in his head. He really shocks me daily. How does a kid who's had 19 sessions of radiation and 6 rounds of chemo remember anything?! You hear of chemo brain and there are moments when he needs short term information repeated, but most of the time he is still sharp as a tack.

Mario also finally acknowledged that his COVID hair had to follow the former COVID beard. Ollie wanted to help. We forgot to bring the clipper guides, though, so Mario really got his money's worth on this one! 😄

Now they can both balance and stick things on their heads! 😜

Ollie is his usual silly self now. Wanting to retry everything. Constant pranks. Laughing at the idea of wearing my glasses because he can't see anyways...

We're connecting with his virtual teacher and his Vision Itinerant teacher and he's getting ready to be a real student again. It'll be a tricky transition after very little formal instruction over the past year. As I told him, he's wicked smart.and can do it. 

We listened to the book, "Who Was Helen Keller?" on Audible and he grudgingly admitted she was pretty impressive and did so much with even greater challenges (in some ways) than he's had to deal with. He agreed that if Helen Keller could deal with being deaf AND blind, he can certainly learn blind.

On Tuesday (Day +50 post transplant) at our appointment at Sick Kids, we were delighted to see Dr. Bader who had been one of our many dedicated oncologists on 4 North at CHEO. He has a tremendous bedside manner and has always been so patient and kind with Ollie. He's doing a rotation at Sick Kids and was excited to see Ollie doing so well. 

His bone marrow transplant doctor, Dr. Ali came in and reassured me that medically Ollie is well and doing better than expected. There is no sign of Graft Versus Host Disease, he's fully engrafted with three chimerism tests of 100% and his counts remain high and normal now. I joked that Abby had said the night before his first chimerism test that her stem cells were likely overachievers. He laughed and said they certainly were and they'd rarely seen a half match transplant go this well. And then he said he'd talked to our CHEO team and they all agreed that there's no medical reason for us to stay longer and we could go home THIS WEEK!!! I was elated and scared all at the same time. 

They originally told us 6-8 weeks in hospital for transplant (we were 5) and at least a month nearby after transplant (it's been 2.5 weeks). Can we really be ready to go home?! We're uncharacteristically ahead...atypical again, but finally in the best way! We've all been pretty emotional over the last 24 hours.

So we're heading back to Ottawa this weekend! I was out running an errand yesterday and all of a sudden became overwhelmed with emotion. I started to sob and had to pull the car over. It's done, I kept thinking (not really, but this part I was so afraid would never happen has been a success add we got through it all). It's real. He's better every day. We kicked the lymphoma in the teeth just like we promised. As usual I get done the hard thing and break down after everything is okay.

On a last happy note and with her permission, I want to share my pride in Catherine Nava. As many of you know, the Navas are dear family friends who have been amazing to us throughout this journey. We got to know them through Francesca who has been one of Abby's dearest friends since Kindergarten. Catherine babysat for us in the past. We have known her for the past 7 years and watched her become an impressive and caring young woman. She's thinking about a career in nursing. She'd be incredible. Every single time Ollie asked her to come and see him in  hospital or at our house, she dropped everything and came. Her maturity (she's 17) and compassion in helping him throughout his battle have touched me deeply. 

Just when I thought I couldn't love and admire her more, she goes and gets registered to be on the stem cell donor registry because of Ollie and Abby!!! My eyes are leaking again! ❤ Please raise amazing humans like Catherine (kudos to her devoted parents). Our future is secure if there are more like her out there.

My heart is full. I am so very grateful to  God, everyone at Sick Kids, Toronto, and everyone who supported us in this part of the journey. Toronto definitely redeemed itself for us this second successful attempt at a stem cell transplant. We're sorry that COVID and our need to keep Ollie safe have kept us from being able to see dear friends who live here and have checked in regularly to offer assistance and support. Your willingness to help was enough and so appreciated. We'll come back for a great visit when COVID is gone for good. 

Watch out, Ottawa! We're coming back!