Almost unbelievably we find ourselves at 5 years post transplant, celebrating Ollie's 5th Re-birthday and Abby's 5th Hero Day (officially last week on July 20th)!
If you have been following along with us the past 6 years since diagnosis, you might remember that it was her incredible bravery donating her half match stem cells for her brother (during the early days of the pandemic on March 31st, 2020 when planes were grounded and we couldn't use the 3 perfect matches on the international registry) that enabled his survival. He finally got them on July 20, 2020 after relapsing in his central nervous system (CNS) a second time, enduring 13 sessions of brain and spine radiation while using his miracle drug, Lorlatinib to get back into remission, and on to transplant with her "overachieving" cells. Getting to long-term survival with ALCL ALK Positive cancer with CNS relapses historically was considered unlikely. Thank God and the science he gave us for the evolution of cancer research that has gotten Ollie to this point!
When you're going through the agony of cancer itself and relapses, all you can do is focus on today's survival. One day at a time. And going through a stem cell transplant requires shortening your gaze even more, to deal with each moment and each hour as they come. Just hoping to survive each day to get through the first 100 days, the first 6 months and the first year.
Then if you are still high risk for relapse even after transplant as Ollie was because of his central nervous system (CNS) involvement, and you are taking a cancer inhibitor drug, you are followed at regular intervals by your medical team for 3 years post transplant. So you get into the 4th year with fear because suddenly you're only seeing your oncology team once a year and not getting scans unless there is an issue. You watch everything like a hawk and pray that the little bumps that appeared on a hot summer day are just heat rash and not a relapse. It takes a lot of effort in these post transplant years to train your brain not to go to the darkest places every time there is a possible symptom that might indicate that your fragile stability is lost.
[Photo Description: Abby, Mario, Ollie, and Dawn pose for a selfie in Mont-Tremblant, Quebec while painting pottery in August 2024. Ollie is sticking his tongue out in cheekiness.]
[Photo Description: Mario and Dawn stand on either side of Ollie in his school's front hall while he holds his certificates and wears his medal after the Awards assembly in June 2025. ]
[Photo Description: Ollie adds his handprint to the lab coat of a researcher from the CHEO Research Institute while Dawn assists at the Hyundai for Hope event at CHEO. These researchers hung these coats in the lab to remind them that real life kids need their discoveries.]
[Photo Description: Dr. Abbott (Ollie's original primary oncologist) stands behind Ollie resting her hands on his shoulders as Ollie gives two thumbs up during his annual oncology visit at CHEO in fall 2024 when we bumped into her. Ollie is wearing a Notre Dame Science t-shirt, a white ball cap that says, VIP and has an image of a figure of a person with a mobility cane on it, and Ollie holds his mobility cane in the crook of his arm.]
[Photo Description: Ollie stands beside his former EA Mrs. Taylor who has her arm around him while Ollie gives two thumbs up and holds his mobility cane in the crook of his arm.]
[Photo Description: Ollie in the recording studio taking direction while reading the Braille script for an upcoming CNIB Next Generation campaign.]
[Photo Description: Ollie after the belt grading in his gi and new green belt while Sensei Lyne stands behind him with her hands on his shoulders.]
[Photo Description: Abby, Mario, Ollie and Dawn pose at Tower Hill in front of London Tower Bridge in London, UK earlier this summer. ]
When you're 5 years out from stem cell/bone marrow transplant you start to settle into the "new normal" of just living. Trying to believe that you finally can without constant fear, and hoping all of the healing that you've done will help to keep your nervous system calm when there are inevitable triggers. You might stop thinking about cancer every day (if you're not still doing all of the advocacy that we do) and when you do think about it at all it is often of the crazy life lessons that you learned, and the unexpected blessings that came your way during an otherwise traumatic time.
So what have our incredible survivors (for Abby and all of us have survived Ollie's cancer and it's long-term effects, too) been up to the past year? In a nutshell - A LOT (you can read the details below)!!! We have continued our many advocacy activities for the many organizations that have helped us to get Ollie well and to help him to thrive, and added a few new ones along the way. Ollie has continued to be passionate about many parasports and the results show that they are keeping him strong and healthy both physically and mentally. Some awards were unexpectedly won within our family and humbly appreciated, and we all grew and healed along the way.
For any who will stop reading here (I appreciate many of you are too busy to read all of the details below), I just want to make my annual reminder to always hold on to your hope, no matter what. Especially if you or a loved one you are caregiver for continues to struggle with getting into remission. I don't know what we would have done without our hope and faith.
If you are working in the medical field trying to save others like my Ollie, please do not look at your patients as if they are statistics. Statistically Ollie should not be here today and there was a time that we were told it was highly unlikely that he would even get back into remission and on to transplant, never mind become a long-term survivor and thrive. But here he is - a testament to determination, resiliency and hope. His survival was possible because no one gave up on him and everyone worked together to find solutions.
Even in stats there are always outliers. The world (even the medical world) is not black and white, but many shades of grey (even Ollie with his blindness sees shades of grey) and neither people nor stats land tidily into typical groups all of the time. Embrace the outliers. Learn from them. Believe that they are real and are sent to teach you new lessons. If there is a sliver of hope that these outliers might survive, allow their families to hold on to this hope and don't crush it. Ollie is here today because we wouldn't let our hope be crushed and our medical team listened to us. We insisted he would survive and they let us try the next thing. That next thing (Lorlatinib and brain and spine radiation) saved him. And the next thing after that (stem cell transplant) gave him re-birth. We were lucky that our next things and time didn't run out and now we try to help to find potential next things for others. We can't save all of them (yet), but we can learn while trying and apply these learnings to the next kids.
Thank you always to our entire teams from bottom to top at CHEO, Sick Kids, the Ottawa Hospital and Princess Margaret Hospital. Thank you to the many many incredible not for profit organizations that have provided resources and programming over the past 6 years since diagnosis (some named here). And to each and every family member, friend, community member, total stranger who came out to help a boy you didn't even know (especially the selfless donors of blood products who saved him repeatedly in those first 2 years of treatment). Every single one of you was crucial in saving our child. We will never forget and will always try to be part of the supportive armies of other children like Ollie to try to help save more of them.
For any who really want the details of our past year:
- Ollie's Health:
- Ollie's two series of bone density scans showed that his osteopenia in his lower back and hip are basically resolved. His bones have grown stronger simply by us ensuring he had adequate intake of calcium, using daily Vitamin D3 and K1 (helps the calcium be directed straight to his bones), and with all of his many parasports that he plays (we've contributed to research that shows that sports and physical exercise in cancer kids makes their bones stronger);
- Ollie had a great annual oncology check-up. Most side-effects have gotten better over time, but a x-rays and an MRI of his spine (due to back pain he was experiencing for a few weeks) confirmed that his spine has degenerated to some degree already (not common in a kid his age, but common in kids his age who have had spinal radiation), and an x-ray of his leg where he had a strange protrusion of a bone identified 3 bone spurs. Neither of these issues is causing him any pain at the moment and we have been proactively seeing a physiotherapist and an exercise specialist at the Children's Treatment Centre to ensure that he is doing the right things for his back daily. We are also waiting on an orthopedic consult (9 months and counting);
- Ollie continues to grow well without intervention other than his daily thyroid medication. He has now surpassed his sister in height (to her disgust)! We are watching his testosterone closely as he cruises into puberty to determine if we will need to add synthetic hormones to ensure his continued normal development and growth. I am still constantly shocked to hear of kids who have not seen an endocrinologist post treatment as I firmly believe this should be standard of care.
- Childhood Cancer Advocacy and Activities:
- Our family's PROFYLE video campaign for Childhood Cancer Canada was launched in September 2024 for Childhood Cancer Canada;
- We were happy to lend our story with others from the Ottawa pediatric cancer community to the Kindred Foundation in support of Phoebe Rose Rocks Committee for a fundraiser in September for Childhood Cancer Awareness Month;
- Ollie and Dawn continue to support CHEO as much as they are able:
- Dawn is Co-Chair of the CHEO Oncology Patient and Family Advisory Council (PFAC);
- Dawn is also a member of the CHEO Indigeneity, Inclusion, Diversity, Equity and Access and Social Justice (I-IDEAS) committee,
- Dawn continues to be a Family Leader with the CHEO Research Institute and a Family Advisor on several of its current cancer studies in progress;
- Ollie helped to cut the ribbon to open the new MRI machine for CHEO in October 2024.
- Ollie also spoke to the CHEO Board of Directors at their annual retreat about his experience as a kid with disability at CHEO and how CHEO can be more accessible;
- Dawn and Ollie supported the shorter Snow Angels for CHEO campaign this year, and their team raised more than in any other year;
- Dawn and Ollie participated in the CN Cycle for CHEO for the first time;
- Ollie participated with other survivors in the Hyundai Hope on Wheels event at CHEO where they donated $250,000 for childhood cancer research at the CHEO Research Institute;
- The whole family participated in the Leukemia and Lymphoma Society of Canada's Light the Night Ottawa Event. Dawn continues to be a member of the LLSC Parent Advisory Committee (PAC) and helped to develop a new series of materials for families experiencing childhood cancer. Ollie's photo and story also continued to be part of various mailouts for LLSC over the past year;
- Ollie was pleased to be asked by his former/first Educational Assistant (now a teacher) Mrs. Taylor to come to her school and speak about his wish from Make-A-Wish Eastern Ontario as her school had decided to support them for their Lenten Project. His speech made a big impact and was really emotional for mama because we got to see Mrs. Taylor who helped him so much his first two years back at school. Mrs. Taylor later messaged us that the school's goal had been $2,500 and Ollie inspired them to crush it, raising $4,022.04!;
- Ollie was asked by one of his CNIB friends to speak at his high school at their Canadian Cancer Society Relay for Life launch in Perth, Ontario and was glad to do so. Ollie's speech also inspired another young woman who attends that school and has been going through cancer treatment at CHEO the past few years to speak publicly and poignantly about it for the first time ever. Ollie also attended the relay itself with his friend and their school had the best result that they have ever had with over $115,000 raised for research;
- Dawn continues to be an active Co-Lead for Advancing Childhood Cancer Experience, Science and Survivorship (ACCESS)'s Education and Training theme and attended the ACCESS Annual Meeting in Toronto in January 2025;
- Dawn helped with a Canadian Blood Services swabbing event in support of Hillary McKIbben. Dawn also donated blood three times in the past year and Abby has just booked to make her first donation now that she is 17!;
- Dawn helped two other Ottawa cancer mamas to start Golden Moms Ottawa this year - a community of unwavering support, advocacy, and connection for mothers navigating childhood cancer—whether in treatment, survivorship, or remembrance.
- Disability/Vision Loss Awareness and Activities:
- Mario took Ollie and Hope to CNIB Buddy Dog Camp last August (Dawn had a flare up of her spinal osteoarthritis so Abby stayed home to help her) and all three had a great week;
- Ollie participated in an accessibility study for a section of the national Museum of Science and Technology and was thrilled to be paid to give his opinion on how to make the Museum more accessible to kids with disabilities;
- Ollie, Hope and Dawn once again were part of the CNIB Guide Dogs float for the Carleton Place Santa Claus Parade (Carleton Place is where the CNIB Canine Training Centre is located);
- In honour of International Persons with Disabilities Day (December 3), Ollie was awarded the Feeldom Student of the Year Award for demonstrating a spirit of compassion and positive influence in his community and got a very cool accessible backpack;
- Ollie was in a recording studio in Toronto to record a character voice for a new national animated campaign for CNIB that will launch this fall (can't wait to share it!);
- Dawn was humbled to receive the King Charles III Coronation Medal from CNIB for her outstanding commitment to advocating for children in Ontario with vision loss through her role as the President of the Ontario Parents of Visually Impaired Children and in recognition of the work that she has done nationally in this realm as well as her national work related to childhood cancer awareness;
- Ollie and Hope were featured in an episode of Collar of Duty Kids last week where we collaborated with CNIB, with Kids Kicking Cancer Canada Heroes Circle Ottawa, and CHEO to show how kids and their service/support animals work together;
- Ollie's Parasports Activities:
- Beep Kickball with the Miracle League of Ottawa - Ollie played last summer and early fall last year and is currently playing again this season;
- Skateboarding - Although his beloved indoor skatepark closed last year, Ollie continues to participate and even help to teach skateboarding to the CNIB youth during the warm months thanks to his instructor Jordan Wells bringing in the Ottawa Skateboarding Association (of which he is the President) to create a "Learn to Skate" para-skating program for them;
- Kids Kicking Cancer Canada Heroes Circle Program - Ollie continues to be involved through both the Ottawa Cancer Hub and CNIB (Dawn is also a member of the KKCC Ottawa Leadership Group) where he participated in regular classes as well as:
- The Jesse McLean 5k Walk/Run;
- AdaptExpo 2025 - Supported their exhibiting and teaching at the AdaptExpo 2025;
- Teaching - Worked with Kids Kicking Cancer founder Rabbi G to teach Detroit Tigers pitcher Sawyer Gipson-Long how to power breathe as he was recuperating last year from surgery, and once again got to meet and do martial arts with Mixed Martial Arts Champion Georges St-Pierre (GSP) as part of Fight for the Cure 2024;
- Ollie received his green belt in June 2025 with another student, making them the two highest belts ever given in the Ottawa program to-date;
- Blind Hockey - Ollie played another incredible season as goalie with the Canadian Blind Hockey Association as a member of the Ottawa 67s Blind Hockey team. This year, an adult team was also started in Ottawa and Ollie often pitched in to be a second goalie for them when needed, playing with the children and youth team and then for a second hour with the adults! His incredible season also included:
- A day on the ice with the Ottawa 67s players,
- Demonstration of youth blind hockey at the Blind Hockey League (BLH) Carnegie Cup in December 2024 (Ollie also got to drop the ceremonial puck to start the international tournament);
- Demonstration of youth blind hockey at Fanfest as part of the World Junior Hockey Tournament in Ottawa in December 2024;
- Demonstration of youth blind hockey at the start of an Ottawa 67s game at TD Place in January 2024 (Ollie also got awarded their mini-game/demonstration puck to keep as the only goalie there);
- Ollie once again participated in the Canadian National Blind Hockey Tournament in Toronto and had his best tournament yet. He was awarded the Most Improved Player Award for his progress over the past year;
- Ollie also attended CNIB Lake Joe Blind Hockey Camp earlier this summer for a week to improve his skills and came back with the MVP trophy and a Champions medal;
- Blind Golf - Ollie began learning to play blind golf from a Blind Golf Pro last summer, continued to learn by using a golf simulator over the winter, and is now participating again this summer;
- Snowboarding - Ollie (and Abby) learned to snowboard this year over March Break at Blue Mountain. Ollie was excited to take his first adapted lesson and is eager to do more this winter (only problem is finding enough nights to do all of his activities!);
- Other Family Developments:
- Ollie started middle-school at a high school in grade 7, had a great year with many new friends, and was part of the Cross-Country team. At the school awards ceremony in June 2025 he received awards for:
- Honour Roll both semesters;
- Director of Education 6 C's of Education - Creativity Award for always being an out of the box thinker who looks for solutions;
- Participation in the Gauss Math Contest with University of Waterloo;
- Cross Country Coach's Award for best team spirit and attitude;
- Abby got promoted to Director at the children's camp and before and after care centre that she works at and is working again full-time this summer;
- Abby got her G1 Driver's License last August and is taking her G2 exam later this summer;
- Karma really delivered for Abby in November 2024, helping her to win two free seats in a donated suite to see Taylor Swift with Campfire Circle in Toronto! Mom got to go, too!;
- Abby had a minor concussion last Christmas from a fall on the ice and we were grateful for the support of the local concussion clinic. She still decided to take her exams and did really well. She is now fully recovered;
- Abby also had her wisdom teeth out last winter as she was already too wise and no longer needed them! LOL She did well and healed quickly;
- Ollie began guitar lessons over the past year, beginning with acoustic and soon acquiring an electric guitar which is his new love. His teacher is a local musician with vision loss;
- We all just got back from an incredible 10 day European adventure visiting England and France to celebrate Ollie's 5 year anniversary of transplant. Dawn was asked to represent Canada and be part of an international ALCL ALK+ pediatric cancer study, so also spent one day at Cambridge University presenting, collaborating and learning.
If you read all the way to here, thank you!
And as you can see we don't waste a minute of the extra time that we have been given with Ollie. Sometimes I am asked if we ever sleep, and we do, but we also know how precious every moment is and don't want to waste any. We do rest and plan to do more of this over the next month to be ready for another inevitably busy year, starting with Childhood Cancer Awareness Month in September.
We don't blog here often anymore, but you can follow Ollie's continuing story on Instagram where we post shorter updates more regularly.
