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!