5 Years: Official Long-term Survival

[Photo Description: Abby hugs Ollie to her as they pose with a cake reading, "Re-birthday/Hero Day #5!". Both are smiling.]

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.]

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.

[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. ]

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. 

[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.]

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. 

[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.]

• 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. 

[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.]

• 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;

[Photo Description: Ollie in the recording studio taking direction while reading the Braille script for an upcoming CNIB Next Generation campaign.]

• 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!);

[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.]

• 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.

[Photo Description: Abby,  Mario,  Ollie and Dawn pose at Tower Hill in front of London Tower Bridge in London,  UK earlier this summer. ]

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. 

Ollie's 4th Re-Birthday/Abby's 4th Hero Day

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.  

[Photo description: Abby smiles and has her arm around Ollie while he gives two thumbs up wearing his graduation suit with navy dress pants, a white short sleeves button down shirt, a vest, a Maple Leafs bow tie and blue reflective sunglasses. They are at Ollie's grade 6 graduation and posing in a balloon arch under a Congratulations banner.]

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.

[Photo Description: A split image with 7-year old Ollie and Dawn in the hagen at CHEO on his first day of diagnosis testing in October 2019 and after ringing the Celebration Bell in the same garden in his last day of official treatment when he was 11 in August 2023.]

- 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.

[Photo Description: Ollie and Dawn pose among a large group of speakers and moderators from the patient-centred care panel at SIOP 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. 

[Photo Description: Ollie sits beside Dawn holding a microphone while speaking on a family panel at the Ottawa launch of the CNIB Children's Charter. ]

- 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. 

[Photo Description: Ollie dressed in his red,  black and white Ottawa 67s Blind Hockey goalie gear waits in net to save a goal.]

- 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.

[Photo Description: Ollie walks his CNIB Buddy Dog Hope along the waterfront one morning at CNIB Buddy Dog Camp.]

- 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. 

[Photo Description: Abby and Ollie high five after blowing out their 4th Re-birthday/4th Hero Day cake today.]

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. 

Keeping the Family Healthy During and Post Cancer

When Ollie was first diagnosed I had a terrible upper chest and sinus infection. Likely exacerbated from the stress of testing and diagnosis. I'd had two rounds of antibiotics already that didn't work, including a bronchial puffer and oral antibiotics. When I heard he'd need to go into hospital for 12 days I was frantic that they wouldn't let me in because of this illness I couldn't get rid of. 

I went to Shoppers Drug Mart late one night in the week between us hearing he had Non-Hodgkin's Lymphoma and later his specific diagnosis of Anaplastic Large Cell Lymphoma (ALCL) and threw myself on the mercy of the young pharmacist there. I explained to her that I'd tried different antibiotics prescribed by doctors, but could not shake this and my actual desperation because I was about to be admitted with my 7 year old son for chemo and needed to keep him and the other kids at the hospital well. 

This kind and knowledgeable pharmacist started by compassionately telling me how sorry she was to great about my son and wishing us strength for the battle. Then she said, "Go to aisle 7 and find the Flonase nasal spray in the allergy section. It used to be a prescription antibiotic for sinus infections, but is now available over the counter as an allergy spray. It's very effective within days. Buy our genetic brand if it's cheaper as it is the same thing." Then she sent me off and wished me well. 

[Photo description: A new package of Flonase can always be found in my medicine cabinet now and works for allergies and sinus/respiratory infections]

That stuff cleared up whatever I had within a few days, but I took it the recommended course to be sure. I often send grateful prayers for that kind pharmacist and her knowledge. 

After that I knew the importance of staying well. During chemo, radiation and stem cell transplant any little bacteria or virus could have killed Ollie or another kid in treatment because with no neutrophils they could not fight infections. I could not live with the knowledge that one of us might do that to him.

Enter my dear friend from high school, now a registered Naturopathic Doctor, Dr. Colleen McQuarrie at Ottawa Integrative Health Centre (OIHC). Colleen has treated me off and on for the past 20 years. She had seen Ollie professionally before we landed at CHEO for testing. I'd ask her to consult because his pediatricians were convinced that his bump was a bacterial infection, but antibiotics were not working. I needed a trusted opinion and she helped us out. She imparted to me that she did feel a mass was serious and that his pediatrician was not moving us fast enough to get us to CHEO. She was the one who told me that we needed an Ear Nose and Throat consult at CHEO and she walked me through how to get my own pediatrician's office to do this.

When she heard that Ollie was finally diagnosed with cancer, she reached out to support me and said she could put together a cocktail of supplements to keep me well and recommended a few for Abby and Mario, too (both who are also patients of hers). She then kindly left them at my house for me and wouldn't take any money, saying it was her contribution to getting us on the path to wellness. I have taken this combination since then and was not sick a single day in his 2 years of treatment and stem cell transplant recovery. 

[Photo description: Dawn's daily vitamins and supplements in 10 bottles.]

Here is what I have taken for 3 years now (a few additions along the way for other reasons noted):

- Women's multivitamins

- Probiotic - I take 10 billion, but there are many formats - to keep gut flora healthy to aid in immune system function

- Iron - 232 mg - I have often been anemic since since high school and especially when you cannot eat leafy greens easily in hospital, this is important

- Vitamin C - 500 mg - helps to absorb sewers of the other supplements and boosts immune system

- Magnesium Bisglycinate/Pure Elemental Magnesium - 200 mg - I started getting leg cramps in the night in hospital when my body was so stressed and this has helped to alleviate those. Ollie also took it for a period of time when the cramps in his legs were bad during the early days of taking his Lorlatinib

- Omega 3 - 1200 mg - I have taken this for 15 years to help with my joints and sciatica. Also good for my heart and brain

- Folic Acid - 1 mg - we added this when I decided to make it my goal to give blood every 84 days as women are allowed in Canada to pay it forward for all who are saving my son. The Folic Acid helps to reproduce healthy blood cells.

- Zinc - 50 mg - to boost immune system

- D3 - 1,000 IU - to boost immune system

- Turmeric/Curcumin - I began taking this daily 15 years ago for my sciatica as it is a natural anti-inflammatory. Helps for any aches and pains in the body and you get a lot sitting around and sleeping in a hospital.

Mario and Abby got sick only once with strep throat in February 2020 before COVID and making everywhere began and Abby was still in school. That was super stressful and they both isolated for 10 days because Ollie was in the Pediatric Intensive Care Unit (PICU) with his first brain lapse.  After that they were way more careful, masking everywhere and taking daily supplements, too (although fewer than mine). Most important for everyone in the family is Vitamin D3, Zinc and a multivitamin. The cancer kid could only take D3 as others can mess up the absorption of their other cancer meds. 

Now that Ollie is 3.5 years in remission and his pediatrician is slowly retiring we have opted to have him see a Nurse Practitioner (NP) in a clinic that specializes in people who have or have had cancer. His new NP has so far impressed me with her comprehensive understanding of his medical history and her suggestions to continue to keep him well. For example, in addition to taking his D3 (which we bumped up to 2,500 mg daily) and a multi-vitamin now, she has added a K2 vitamin explaining that while the D3 helps him to absorb calcium, much of it still goes to waste due to inefficient absorption, so the K2 helps the calcium to go directly to his bones and help to strengthen then to improve his osteopenia (a result of long -term steroid use during treatment). 

She's also recommended that we add more Zinc as it helps with testosterone, which his endocrinology team is watching as he enters puberty. In addition she is recommending some options for a gentle detox of his liver which we are looking into. She also shared some evidence that the use of melatonin has anti-cancer benefits and was glad to hear that he had used it extensively during and after transplant as we worked to combat his lack of circadian rhythm due to not being able to see when it is daytime versus nighttime. 

While we are very grateful to Western medicine for ultimately saving our boy, we also believe that a combination of Western, and complimentary and alternative medicine generally reaps the best results and the healthiest people in the end. As we have shared in this blog before, Ollie had osteopathy treatments from our friend Elliot during chemo and regularly for the first two years after transplant. We are big proponents of massage therapy for any in the family that could benefit from the stress relief and know that CHEO was running a pilot last year where they were offering gentle massage on the oncology ward. Acupuncture has helped my own sciatica and related neuropathy in my leg and foot.

Always check with your own care team before taking any combination of supplements and vitamins, or using any complimentary or alternative therapies, but we hope that this may give you ideas to keep your family well through a cancer journey, too. 

The Official End of Treatment

[Photo Description: A masked Ollie and Dawn pose on the first floor of CHEO under a street sign that reads, "Memory Lane".]

Yesterday was our last of three years post stem cell transplant regular oncology checkups and bloodwork at CHEO. How naive was I when I thought we'd be done with cancer in 8 months of treatment maximum?! 😆 It's been almost 4 years since we started at CHEO!

On October 22, 2019 we started our medical journey at CHEO when we arrived for our first tests, so today we took a little trip down memory lane. 

[Photo Description: Ollie, Micah, Isaiah and Theo sit in the lab waiting room talking and watching tablets.]

We started at the lab where we bumped into friends Paula and her boys Isaiah, Micah, and Theo who were also waiting for bloodwork. They were one of the many amazing families who helped during our battle. How fitting that we had a reminder of the army that helped us over the past 4 years.

Also fitting that while in the unusually long line waiting at the lab, CHEO's fearless leader, Alex Munter came along, said hi and set about trying to find out why the line up was not moving faster and updating us soon after. A simple example of the leadership at CHEO that has kept things moving for us even during the difficulties of the pandemic. In February 2020 Alex came to Ollie's hospital room after the story about his missing stuffed llama went viral. At that time Alex told Ollie if he needed anything to let him know. Needless to say, Ollie and I have taken him seriously and never been shy to ask for the things we think can make things easier for families like ours. In turn Alex has always considered every request or suggestion and done what he could to help. So in keeping with his action-oriented approach, he followed up tonight by email, asking our opinion on some other possibilities to make the lab easier and more efficient for families. How lucky are we to be able to influence even better care for CHEO families?!

[Photo Description: Ollie wears his CHEO shirt, shorts and a mask and poses in front of a mural of children playing in a tree with the word CHEO in a cloud above. Ollie is giving two thumbs up and holds his cane in the crook of his arm.]

After Alex left and we waited with our friends for a while, I did have to go into the lab reception area and advocate to be accelerated so that Ollie's bloodwork would make it into the courier by 2 pm to head to Germany for his final inclusion in Dr. Woessman's Anaplastic Large Cell Lymphoma relapse research and be tested one last time to determine if there is any Minimal Disseminated Disease (MDD). It has been negative (or clear) every single time we've done it the past few years. This has given me significant comfort in concert with his scans, even though the test is not yet widely used for lymphomas. 

They did accelerate us to make the courier and Ollie was a complete champ. We did it so quickly that we forgot to ask for the freezing spray that numbs his arm before the poke and he didn't even make a peep and only mentioned it after we were done, saying his arm was a little sore. From a boy at least 3 of us had to hold down 4 years ago as he kicked and screamed during pokes even with freezing spray, to this calm and capable of handling anything boy. What a transformation.

[Photo Description: A photo of posters in English and French found on the reception desk in the CHEO Medical Day Unit promoting the Patient and Family Advisory Council (PFAC) and Campfire Circle Family Picnic for oncology families. This is one of the many initiatives that the Oncology PFAC that I am a member of has organized to connect with and make cancer care easier for new families.]

On to oncology where we had a final checkup and they told me this was really it...that there would be a check in once a year, but no scanning unless there were symptoms and they were a phone call or an email away, but didn't need to see us again unless we really needed them. I admit I got teary and a little fear gripped my heart all of a sudden. I've felt somewhat this way each time we reached a new milestone where we'd reduce the frequency of visits, but this was really the last one. They consider him to be well and completely stable and no longer in need of them. After my panic and tears I used my best Kids Kicking Cancer Canada power breathing to help the panic pass. We gave big (masked) hugs to our post transplant clinic Nurse Julie who has taken amazing care of us the past two years, and helped me through more moments of panic than I could count simply by responding quickly and getting us access to whatever we needed to keep him well. She is one of the most responsive health care practitioners I've ever met and she has been such a blessing to us.

[Photo Description: Ollie eats a sub at the Oasis Cafe at CHEO]

From there we had one more of the likely hundreds of subs that we've eaten at the cafe. For whatever reason the food even tasted better today than it usually does.

[Photo Description: Ollie lies on the table and is connected to 13 wires for his routine EKG in cardiology.]

On to cardiology for EKG and Echocardiogram  and I laughed out loud remembering them trying to get Ollie's hospital bed down that corridor after relapsing in his brain. I did not imagine then ever being able to laugh about anything that happened to us during that awful time. Time and doing the emotional work really does heal wounds (as my therapist reminds me).

[Photo Description: Ollie lies on the table for his Echocardiogram as the technician's gloved hand can be seen using the probe during his test.]

Next we popped up to 4 North to say welcome back from mat leave and goodbye to our angel on earth, Dr. Abbott. Our other oncologist angel, Dr. Brianna Empringham is also on mat leave right now. After a short visit, big hugs with Dr. Abbot for Ollie and I. She marveled at how tall and lean Ollie was since she last saw him a year ago (he's lost 22 pounds since stopping the Lorlatinib a year ago and built a lot of muscle playing all of the sports he plays, plus he's still in the 97th percentile for height for his age). She told me I was a great hugger. I could hug her forever and never let go after all she's done for our family. LOL Grateful to have also seen a bunch of our incredible nurses, our favourite pharmacist and one of our child life specialists, too.  

We were too busy hugging our team in MDU and 4 North  to take pics! And as they all reminded us, we'll see them in October at the SIOP international oncology conference that CHEO is hosting and Ollie and I are speaking at on patient-centred care. I teased Dr. Abbott that they asked us because I was clearly not afraid to ask for what we needed. Dr. Abbott told me that I always asked in the nicest and most respectful, yet assertive way, and she thought I should be teaching a class to all little girls so that they'd all get what they needed as they grew up. As an outspoken person who has often been concerned that she is seen as too loud or brash, I was flattered that she saw me that way. She's done everything I asked and more for 4 years. Not once did she ever say no to any of my ideas or make me feel like I wasn't an equal partner in Ollie's care team. She always left us in good hands when she couldn't be with us and doesn't take any credit for her leadership in helping him to survive. She could ask virtually anything of me and I'd do it for her in a heartbeat, no questions asked. She thanked us for the visit, wished Ollie a good start to his school year next week and promised she'd see us in October at SIOP.

Next was the requisite visit to the gift shop. And for once my brave boy left empty handed because he already had all of the Lego sets that he wanted and couldn't rationalize me spending $8 on the world's tiniest harmonica that he'd admired. So he picked a CHEO shirt for daddy to match the one he himself already had and left happily. He's maturing so nicely and better understanding that while it's nice to have things, what matters most is having the best people in your life. 

We had one final stop before we could leave. Ollie indulged me and went along with going back to the CHEO playground we'd stumbled upon on our very first day at CHEO during testing before diagnosis on October 22, 2019. 

The playground is located behind the main building of CHEO, near the Children's Treatment Centre and Roger Neilson House. 

[Photo Description: A split photo. In the left is a photo of 7-year old Ollie hanging down headfirst and making a crazy face from the top of the playground slide at CHEO on his first day at CHEO for testing on October 22, 2019. The second image is of Ollie standing in front of the same slide with two thumbs up and holding his mobility cane on his last official day of oncology and post transplant treatment, August 28, 2023.] 

On that day almost 4 years ago we had zero idea of how much our lives were about to change nor how important CHEO and everyone who worked there would become to us. The 7-year old kid on the left of the photo above (who was not evidently sick or short of energy when diagnosed with stage 3 cancer) was ready to dive headfirst down the slide like the crazy brave kid he always was and used this bravery every one of the last 1,406 days since we started at CHEO. The courageous kid was more subdued this visit and opted to just pose in front of the playground instead of playing on it. A sign of his newfound maturity as he becomes a tween and is slowly moving away from what is left of his complicated childhood.

[Photo Description: A split photo. On the top is a selfie of Ollie and Dawn smiling while sitting on the wooden swing in the Little Garden on October 22, 2019. On the bottom is a photo a passerby took of Ollie and Dawn posing in the same garden beside the Celebration Bell on August 28, 2023.]

Finally, we reached our ultimate destination in CHEO's Little Garden located in the little forested area behind the playground. 

The bell was first rung by Hillary McKibbin to mark her remission of her Aplastic Anemia. Due to the threat of COVID and her being severely immuno-compromised, her family needed a bell that she could ring outside safely, so her incredible mama Kelly McKibbin built one and later donated it to CHEO so that ALL families could celebrate and mark milestones. 

[Photo Description: Ollie holds the string of the Celebration Bell in the CHEO Little Garden, readying to ring it to mark his last official day of oncology and post transplant treatment.]

I met Hillary's mom Kelly online just a few months before Ollie was diagnosed. I'd seen Hillary's story and plea for stem cell donors in the news and her story called out to me and touched me in ways I didn't understand then. I felt called to follow her journey and connect in empathy with her brave mama. Kelly and I had corresponded from time to time for months via Twitter private messages as I sent her encouragement and marveled at their bravery in telling their story so honestly and publicly. When Ollie was diagnosed, Kelly was actually among the first people that I told and we were both shocked that we were suddenly living such similar lives. I believe it was divine intervention that brought us together and we supported each other throughout the pandemic as we both put everything we were into getting our children well, keeping them safe, and encouraging others to donate blood products for kids like ours. 

[Photo Description: A photo of one of the gold plaques with black writing on the purple post of the bell that reads, "Celebration Bell: This community bell is for all families to enjoy. Ring it to commemorate a milestone, a recovery, or an achievement that brings you joy." The text is also translated into French and the CHEO Foundation logo is on the bottom.]

When we found the bell I read every word aloud to Ollie and got choked up as I read these words to him. Today we celebrated the milestone of being done our final of three years of regular oncology checkups, officially being off treatment, fully recovering from his cancer and stem cell transplant, and this was certainly an achievement that brought us joy. And we were marking the occasion on Hillary's bell. I couldn't imagine a more perfect way to end our last official day at CHEO.

We finally made good on our promise to our friend Hillary that we'd one day find her bell and ring it, too. So here we both are ringing the Celebration Bell. We rang the heck out of that bell (but don't worry it's still perfect and ready for many many more celebrations for other families!)!

[Photo Description: The commemorative plaque on the post of the bell that thanks all who contributed to the bell's creation.]

Now realistically, cancer survivors don't ever get to be done with their medical journey. While Ollie is officially done in oncology, he continues to be seen twice a year by endocrinology and his bone specialist for his hypothyroidism and osteopenia. He'll still visit opthamology and his retina specialist at least annually. As big things happen in his life and he transitions through different growth stages where he may be triggered by all that he's survived, we'll still see the social workers or child psychologists when needed. He has a pulmonary function test in September to ensure his lungs are still healthy. Still a lot, but so much less than our normal of the past 4 years. 

And I'm still on the Oncology Patient and Family Advisory Council (PFAC), a Family Leader for the CHEO Research Institute, and a member of the CHEO Inclusion, Diversity, Equity, and Accessibility (IDEA) Committee, so I'll still be part of the active CHEO family. And I'm still a Co-Lead of the Education and Training Matrix for the Canadian Pediatric Cancer Consortium, so am committed to continuing to help make things easier for families at all pediatric cancer centres across the country.

Ollie was randomly emotional yesterday, too. Maybe in part because he felt mine, but there were lots of extra hugs from him and requested by him throughout the day. One day he'll truly understand how his army wouldn't give up on him and saved his life multiple times. He is one of their many successes and miracles.

I feel sad AND happy, AND fearful AND hopeful about reaching this milestone and the ending of a huge part of our lives. We remain so grateful every day for the unbelievable people at CHEO who have helped us to survive so much. They truly treat the whole family and make you feel part of theirs. 

I think the Buddhist Proverb below sums up pretty well how I feel right now. Stay tuned to hear more as we get started on our next new beginning.

[Photo Description: A quote that reads, "In each loss there is a gain, as in every gain there is a loss, and with each ending comes a new beginning. - Buddhist Proverb"]

3rd Re-Birthday/Hero Day - A Love Letter to Sick Kids and CHEO

[Photo Description: A split image. On the left is a photo of mom Dawn with eyes closed while lying with Ollie, cradling him from behind as he slept in his hospital bed at Sick Kids Hospital in the Oncology ward in April 2020. It had just been confirmed that Ollie had relapsed in his central nervous system a second time while readying to go to transplant. On the right side, in April 2023 Ollie stands on the stairs at home in Ottawa with one arm in the banister and the other around Dawn who has her arms around him. Both are smiling and healthy.]

There are many kinds of love. The first love one has for one's parents or whoever nurtured you from birth. Some are lucky enough to have the love of siblings. Others simply the love of extended family. Love for friends, especially those who share your history and/or hard times. Romantic love for your partner made even bigger if you become parents together. Love for your children, whether born to you or gifted another way. 

But over the past 1337 days since my child was diagnosed with a critical illness that left me contemplating a possible life without him and ultimately getting to keep him, I have come to understand that there is also a special love that you have for the medical team that saves your child.

[Photo Description: Ollie sleeping after receiving the Benadryl before his stem cell transplant, while a Sick Kids nurse in PPE prepares to start the transfusion of Abby's stem cells.]

And so I am writing this love letter to my son's medical teams at Sick Kids Hospital and CHEO on this, Ollie's third re-birthday and our daughter Abby's 3rd Hero Day. Three years ago when then 8 year old Ollie (who had gone blind during his first of two relapses of his Anaplastic Large Cell Lymphoma ALK+) finally got his sister's half match stem cells at Sick Kids Hospital after a very intense and bumpy cancer journey, we breathed a sigh of relief, but knew that the hard work of recovery and survival was just beginning and there were no guarantees that it would work. 

[Photo Description: a split screen image of a video chat that we had with Abby while the transplant was started. Given out was early pandemic she was not allowed to be there in person even though she was the donor, so this is how we made her part of the momentous occasion. The top image shows Abby smiling as we show her the bottom image, which is the bag of her incredible stem cells hung with other bags of fluid and medication to be administered.]

To recap, it was just months after the COVID-19 pandemic had started. We'd arrived at Sick Kids from CHEO the first time for stem cell transplant in the second week of the very first lockdown after 6 intense months of cancer and relapse treatment at CHEO. Because of the pandemic, planes were being grounded, so his then 11 year old sister suddenly became his donor. Her cells were harvested at Sick Kids on March 31, 2020 and just 8 days later he relapsed in his central nervous system a second time. Unfortunately this was the week before he was supposed to start his total body radiation. We stayed in Toronto for 5 weeks after this to try a cancer inhibitor drug to no avail. 

[Photo Description: Abby watches as her stem cells collect in a bag hung on the Apheresis machine in the Dialysis Unit at Sick Kids Hospital on March 31st, 2020. The lines running her blood through the machine to strip out her stem cells can be seen beside her.]

After consulting with our CHEO Oncology team we opted to go back to Ottawa to try brain and spine radiation (thank you to the Ottawa Cancer Centre Radiology team at the Ottawa Hospital) combined with a brand new TKI obtained under compassionate grounds.  

[Photo Description: Members of the radiation team at The Ottawa Hospital put Ollie's radiation mask on him while he lies on the table. The team had his mask decorated with the cartoon character Johnny Test, which was his favourite. This radiation mask now hangs proudly like a trophy head in his epic playroom.]

To our delight and to the shock of his transplant team, this back pocket plan (designed by his CHEO team after his first CNS relapse) worked! By the end of June 2020 he was back in remission and 6 days later we were back at Sick Kids to ready for a second attempt at a transplant. 

Total Body Irradiation (TBI) at Princess Margaret was intense, but went well and we are grateful to the team there for their patience and help. 

To our shock, transplant went very smooth (a far cry from our very bumpy cancer treatments before) despite the added stress and fear of doing it during the first months of pandemic. Chimerism (which measures the number of donor cells present in the recipient) was 100% from the first test and has remained so the entire three years since. Our cheeky daughter promised us her cells would be overachievers and they certainly were!

[Photo Description: Abby, Mario, and Dawn surround Ollie in his wheelchair in the Atrium near the elevators on the 8th Floor at Sick Kids on discharge day +38. All are wearing masks and looking jubilant.]

Ollie was so well that after being discharged on +38 after transplant, we only stayed nearby until +58 and then were sent back home to have CHEO do the post transplant care since. We are about to have our final of three years of regular bloodwork and checkups post transplant at CHEO in August and I am actually weepy at the thought that we'll only see our oncology team once a year after this, despite how grateful I am to be at this point.

He's now fully re-vaccinated, breezed through COVID-19 just two weeks after his third vaccine for it in March 2022, has been unbelievably well, stopped his Lorlatinib TKI a year ago this week, lost 26 pounds of the weight gain from the TKI, is mentally well thanks in large part to CHEO Oncology's Psychologist and Social Worker, and remains in remission as confirmed by scans last month. 

Even better, he's living his best life, continuing to take skateboarding lessons, earning his orange belt in karate this year through Kids Kicking Cancer Canada, playing with the Canadian Blind Hockey Association last winter, Beep Kickball in the spring and summer, and representing his elementary school (grade 5) on their floor hockey and track and field teams. 

[Photo Description: Ollie poses for a photo during hockey practice with the Canadian Blind Hockey Association/Ottawa 67s Blind Hockey team in February 2023.]

He also does an amazing job advocating for better childhood cancer and blindness care and awareness whenever he's asked. He was featured (skateboarding blind) in a national Canadian Cancer Society Palliative Care campaign in January and spoke to Parliamentarians on behalf of children with cancer at their Day on the Hill in April. He and his CNIB Buddy Dog Hope will also be featured in an episode of AMI-TV's Blind Trust: A Guide Dog's Journey on August 22, 2023.

He will also be speaking on behalf of Young SIOP and I on behalf of Childhood Cancer International in the session on patient-centred care at the upcoming SIOP Congress in Ottawa this October. So if you're there, come by and say hi! I am also thrilled to contribute to several childhood cancer advocacy activities, many within CHEO and perhaps most notably with the new Canadian Pediatric Cancer Consortium (CPCC) as one of the Persons With Lived Experience Co-Leads for the Education and Training Matrix. We never take for granted how very lucky we are to be here today and do our best to give back where we can.

[Photo Description: Ollie and Dawn pose in front of the Canadian Cancer Society backdrop on their Day on the Hill. Ollie looks very handsome in a white dress shirt with bow tie and black dress pants and holds his mobility cane and Mom's arm.]

This love letter is for each and every single person in hospital who helped my son to survive. No contribution was too small and we are grateful for all of them including, but not limited to (in completely random order):

- The ENT clinic at CHEO who helped us to get to the bottom of the bump on his neck and get to diagnosis in 28 days after trying to figure out with our pediatrician for 4 months what it really was;

- Our incredible team of Oncologists and transplant doctors, lead by Dr. Abbott, Dr. Alexander and Dr. Ali;

- The people who cleaned his rooms and kept them bacteria free (especially when he had no immune system after transplant and during the pandemic); 

- Health care aids who transported him safely to so many operating rooms, scans and tests, all while keeping him and mom calm and often while telling us great stories that distracted us during stressful times;

[Photo Description: The 4 North Oncology Team and fellow patients at CHEO cheer and celebrate as Ollie rings the last planned admission gong (after his first central nervous system relapse during front line treatment) with Mom and Dad supporting him as he stands without his wheelchair to do so.]

- The incredible nursing staff in the MDU (especially our nurse case manager, post bone marrow transplant nurse, POGO Interlink nurse, and Nurse Practitioner), 4 North, Surgical Day Unit and PICU at CHEO and the Sears Clinic and 8th Floor, especially BMT Unit at Sick Kids; 

[Photo Description: Nursing staff in the Sick Kids BMT Unit give Ollie a send off with cheers, music and pom poms while daddy pushes him in the wheelchair on +38 discharge day in August 2020.]

- Lab technicians, pathologists and researchers who did the many tests to arrive at a rare diagnosis, identify infections, and to help us monitor too many risks to count over the past three and a half years;

- Imaging technicians and radiologists, often who dealt with our urgencies and were called in the middle of the night to do scans when he was relapsing or had to deal with our intense "scanxiety";

[Photo Description: Ollie sits with his leg in a bone density scanner at CHEO while a technician sits at the computer beside him.]

- The CHEO Genetics team and those at PROFYLE for helping us to identify his specific mutation that lead to a targeted therapy that was obtained under compassionate grounds, and got him back into remission and on to transplant after his second relapse when it looked doubtful that anything would;

- Pharmacists who helped us to find the right cocktail for every situation, creative ways to get adult meds down his hesitant throat, and ensured that despite it all happening during a global pandemic across two cities, we never had to worry that the lifesaving drugs wouldn't be available to us;

- Palliative care at both hospitals and the PICU team at CHEO who taught us that they do so much more than pain management and calling them in does not mean end of life;

[Photo Description: Ollie sits in his wheelchair at CHEO while recovering from his first relapse and is surrounded by therapeutic clowns, who were causing mischief and giving out lollipops.]

- Psycho-social teams including child life specialists, social workers, psychologists, psychiatrists, therapeutic clowns, music therapists, art therapists, volunteers, etc. You brought fun and compassion to a very scary situation for us on a daily basis and I am certain we could not have walked away with any good memories of this period without you;

[Photo Description: Ollie strums a ukulele in his hospital bed while a Music Therapist at Sick Kids plays the xylophone in an isolation room while waiting to engraft during transplant.]

- The radiation teams at the Ottawa Hospital and Princess Margaret Hospital who worked together flawlessly to calibrate both brain and spine radiation and total body radiation within mere weeks of each other and made something so very scary almost easy for us;

[Photo Description: Princess Margaret Hospital radiation team prepares Ollie for total body radiation, sticking a device to his back to measure the exact amount of radiation being delivered.]

- Other "ologists" and specialists that treated his specific relapses and side effects including neurologists, endocrinologists,  cardiologists, ophthalmologists, occupational therapists, physiotherapists, respiratory therapists, bone specialists, auditory specialists, retina specialist, dental clinic, etc.

[Photo Description: Ollie prepares to have a pulmonary function test in February 2021 at CHEO. The respiratory therapist in PPE with his back to the camera is a childhood cancer survivor himself.]

- ER staff at both hospitals - when you are a cancer family you are bound to spend a lot of time in emergency and we are grateful for your efforts to minimize our wait to be unexpectedly admitted when needed;

- The Vein Access Teams (VAT) in both hospitals who quickly became among the most important people on our team;

- All others in senior leadership, administration and services - e.g. scheduling, admitting, cafeteria, laundry, maintenance, technology, parking, HR, finance, fundraising, communications, etc. I am certain you rarely get thanked by families, but all of you keep the hospital running seamlessly and we know during the pandemic this took extraordinary effort;

-  The Apheresis/Dialysis Unit for helping us so much on stem cell collection day and showing us what a fun place Sick Kids could be with your Tick Tock Dancing to entertain your young dialysis patients;

- Food services and restaurant/cafe staff who stayed open and served us during the early days of COVID despite the fear and unknowns;

- Anyone and everyone else I have forgotten to mention by clinic unit or specialty here. It literally took an army and my poor brain is still reeling at the magnitude of what you all did for us.

Gratefully we remember all of you and your contributions on this day and every time we look at Ollie, as he is living proof that an army working together with science and hope makes miracles together. We will never be able to adequately thank you all for saving his life, so we will keep doing whatever we can to help you to at least save others, too, through our advocacy and fundraising efforts. Know that we will never forget the thousands of kindnesses that you sent our way.

With love and gratitude always,

The Acosta-Pickering Family:

Dawn, Mario, Abby and Ollie

P.S. - Please share this with any who may have helped us at all four hospitals or who just need to be reminded of how important their work really is today and everyday.