It has been 6 months since I wrote a blog post as with Ollie's many activities these days, we share more regularly on Instagram and other social media (follow Ollie @cnib_ollies_hope for regular updates), but we needed to mark the occasion of the fourth anniversary of Ollie's stem cell transplant with Abby's beautiful lifesaving half match cells today.
To refresh your memory, Ollie was diagnosed at CHEO with Anaplastic Large Cell Lymphoma ALK Positive in November 2019 when he was 7 years old. After two rounds of chemo he suddenly relapsed in his central nervous system and went blind. He had a short stint in the PICU, and he got back into remission just as the pandemic hit. Because of the pandemic we were unable to use one of the three perfect stem cell matches on the international registry, so our then 11 year old daughter Abby became his half match (haploidentical) match instead.
We moved to Toronto at the end of March 2020 and Abby had her beautiful cells collected at Sick Kids Hospital on March 31, 2020. He was supposed to get them April 16, but by April 8th had relapsed again in his central nervous system. We tried more intrathecal chemo and a cancer inhibitor drug (Ceretinib) that didn't work for him. I had an agonizing conversation with our transplant/oncology team at Sick Kids about how there were few options left and maybe we should think about not treating him and causing him more pain or sudden death. I raged against this and told our team we were going to try any, and all options left before we'd be done.
Back to Ottawa we went to try 13 sessions of brain and spine radiation and a drug which was never tested in children (Lorlatinib), obtained under compassionate grounds from the manufacturer. Blessedly, this worked and got Ollie back into remission and on to transplant. We moved back to Toronto in early July 2020 and after 6 sessions of total body radiation and 2 days of chemo, got his transplant on July 20, 2020 with Abby's incredible cells. You can read about Ollie's journey on our blog and about his transplant day at Sick Kids Hospital here.
Four years ago when his future was a big question mark and the world was topsy turvy during the pandemic, we could not have imagined how he'd be thriving today. His recovery and his adapting to his blindness and showing everyone all that he can do have been extraordinary. Each year on the anniversary of his stem cell transplant, we share an update on how he's doing for all who have helped to get him well with their support, medical service, prayers and love.
Over the past year here is how Ollie has lived his best life and made his mark on the world:
- Officially ended treatment at the end of three years post transplant in August 2023 and has remained stable without any new medical issues over the past year.
- Was part of a panel of speakers (with mom) on patient-centred care for the SIOP international pediatric oncology conference held in Ottawa in October 2023.
- Played on his school's floor hockey team, and was part of their Track and Field and Cross-Country teams, running with a sighted guide. In addition, he also played another season of Beep Kickball with Kids from the Ottawa vision loss community, participated in a paraswimming program at Carleton University, and learned to play Goalball this spring from members of the Canadian Paralympic Team who will compete in Paris in the coming weeks.
- Inspired a skateboarding program for youth with vision loss in Ottawa through the CNIB and the Ottawa Skateboarding Association and is helping to teach the program, too!
[Photo Description: Ollie demonstrates a skateboarding move on the half pipe ramp at Ottawa's Lansdowne Park with his instructor Jordan nearby and other youth with vision loss watching. He is using a mobility cane while skateboarding.]- Helped to launch the CNIB's Children's Charter of Rights and new strategic plan with the goal of "Our kids will thrive." Spoke with mom Dawn at the CNIB Toronto event and at the Ottawa event on Parliament Hill.
- Played in his second season of Canadian Blind Hockey and his first season as a goalie with the Ottawa 67s Blind Hockey Team. He also played in the Canadian National Blind Hockey Tournament in Toronto in March 2024 where he is one of only 3 youth Blind Hockey goalies in the entire country, and the youngest ever goalie to play Canadian Blind Hockey.
- Was a CHEO Kid Ambassador for the annual Snow Angels for CHEO fundraising campaign for the 4th year in January 2023. Watch his snow angel making in his bathing suit here.
- Participated once again with CNIB Guide Dogs and his CNIB Buddy Dog Hope in the Carleton Place Holiday Parade in November 2023 and the CNIB Buddy Dog Camp in Muskoka at CNIB Lake Joe in August 2023.
- Was featured in the Leukemia and Lymphoma Society of Canada's national campaign in May-June 2024. Dawn sits on the LLSC's Parent Advisory Committee and has been helping them to develop new pediatric cancer supports as well.
- Spoke (with mom) to Executives at Canadian Blood Services at their annual leaders summit in Ottawa in May 2024.
[Photo Description: Ron Vezina, VP of Public Affairs, Dawn, Ollie, and Dr. Graham Sher, CEO are arm in arm at the Canadian Blood Services Executive Leaders Summit in Ottawa in May 2024.]- Was confirmed in May 2024, to fully complete his baptism in the Catholic Church. He chose this because of the deep faith that he has, having survived so much thanks to God and the incredible medical team and army of support that he sent us.
[Photo Description: Dawn, Mario, Ollie and Abby pose in the steps of the church for a family photo on the day of Ollie's confirmation in May 2020.]
- Recently received his orange green belt in martial arts with Kids Kicking Cancer Canada Ottawa Chapter. This is one of the highest belts that they have given in the Canadian programs to-date.
- Gave a Para-Athlete testimonial as an Ambassador representing both Kids Kicking Cancer Canada and Canadian Blind Hockey and delivered a demonstration of Kids Kicking Cancer Power Breathing at the Ottawa Inclusion and Parasports Expo in June 2023.
- Graduated from his elementary school from grade 6 in June 2024 - a bittersweet day due to leaving the incredible community that supported him during his darkest days, and celebrating this milestone when we weren't sure he'd ever see it 5 years ago. (See photo above)
- Spoke (with mom) to 400 donors at a fundraising dinner in June 2024 for the Ottawa Sports and Entertainment Group (OSEG) Foundation on behalf of his Ottawa 67s Blind Hockey Team that they sponsor.
- With his family was part of a video shoot in June 2024 for a special project with Childhood Cancer Canada launching in September. Here's a behind the scenes sneak peek.
Watch for details soon!
[Photo Description: Ollie poses in front of the Sick Kids Precision Health Care Crystal Ball in September 2023 on University Ave. in Toronto. The crystal ball was inspired by #TeamAddy. It was actually Precision Health Care that identified Ollie's miracle drug through genetic sequencing.]
So Ollie has had another incredible year of wellness and has lived the big beautiful blind life that we promised our team we would ensure he'd have WHEN (not IF) they saved him. The only minor medical issues he's had this year were changes needed to his thyroid medication because of his growth spurts (he's now 5'3" and growing normally without intervention and wears a size 10.5 men's shoe already!), and we discovered that like his sister he now seems to have a sensitivity/allergy to chlorine (fascinating as he never did before and we've heard many stories of a recipient suddenly having the same allergies as their donor), which is easily managed with an antihistamine. He has his annual oncology checkup at CHEO in September and at this point there's no concerns. He'll have bone density scans and bloodwork next week for endocrinology who continues to follow him every 6 months.
His attitude is always so positive and he never lets his fear hold him back from trying new and exciting things. Last year at SIOP a woman attending asked me if he had a hard time staying active with his blindness and I literally laughed out loud, proceeded to apologize, and explain that there is little that he doesn't do. In the past week alone he's done martial arts, therapeutic horseback riding, and learned to play Blind Golf thanks to the amazing resources in our community.
Last year he got a character award at school for his grit. I think that really is the best way to describe him. He's literally influencing and changing the world for the better with his advocacy already and he's only 12. We couldn't be prouder or more grateful.
This also serves as my annual reminder to CHEO and Sick Kids Hospital to continue to work tirelessly to find new ways to treat rare cancers, and never to lose hope or see these incredible kids as just statistics. Statistically he shouldn't be here today with all that's happened to him. But he always beats the odds and is atypical in the best ways. I am so grateful every moment that I listened to my gut and insisted we try the next option to save him. And that our medical team listened to me and found the next thing to try.
As for the rest of our family, we're all good. Together despite all odds and mostly happy. The past year has seen greater stability for all of us, especially Abby. She is now 16, no longer anxious about friends knowing our family's story, and she's impressing us with how responsible she is this summer as a director at a local summer day camp. I feel like we'll blink and she'll be off to her next chapter in post secondary school and am basking in these last precious years of us all being together, because we know too well what it's like to be apart. Because she's working every day with kids, and given her personal experience with childhood trauma she's thinking about a career in psychosocial support for children who have been through trauma. I cannot imagine a better possible path for her to share all that she's learned the past 5 years. No matter what she chooses to do, I know that all of this will translate into her changing many lives in incredible ways, too. She's certainly changed all of ours with her selfless gift.
Mario is stoic as always. Happy to spend time with all of us, tinkering with his computers, building Lego pretending it's all for Ollie and not really a childhood dream come true for him, and being constantly dragged out of his comfort zone by all of us who love him.
I continue my many advocacy activities - some with Ollie as noted above and some on my own (e.g. as Co-Lead for ACCESS' Education and Training theme), but all with the desire to give back and to make the world a better place for my children and other families who must endure what we did. Many ask me how we do so much advocacy on top of our everyday life. The truth is that it's a true passion and has been a need the past 4 years to help us process and make some kind of sense out of something that seemed so senseless. It's been a gift that we've given both ourselves and the childhood cancer and vision loss worlds and a way to pay what we were given forward. As always, it always feels so great to give, so we'll keep doing it as long as we can.
So lovely to read this, such a wonderful milestone. You guys inspire me everyday. Lots of hugs
ReplyDeleteThanks so much! We are always humbled when people tell us that we inspire them. The best reward is hearing that others have taken this inspiration and used it to fuel kindness for themselves and others.
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