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. 

"Hyper"-charged Back to School and Childhood Cancer Awareness Month

[Photo Description: Ollie lies on a hospital gurney hugging CNIB Buddy Dog Hope in CHEO's Medical Day Unit (MDU) during his August bloodwork and checkup.]

It has been a busy 2 months since I last updated the blog in mid-August! I figured I'd better write an update as I am starting to get private messages from followers wondering if we're okay.

I expected to update before now, but a few minor developments (I'll elaborate later in this post) have kept me busier than expected and we had hoped to have had scans by now and be able to confirm if he was still in remission. Unfortunately we all got colds the past couple of weeks (many many COVID tests taken to be certain that is all it was for each of us in our turn) and had to postpone Ollie's original scan date last week until October 19th, so we don't have any news on that front yet and while we are at it will ask you to include Ollie in your prayers for the next week for clear scans again.

[Photo Description: Ollie proudly wears his white Kids Kicking Cancer Canada gi and new yellow orange belt in the living room while standing on an exercise mat with Hope at his feet after his virtual belt grading.]

Backtracking a bit, the end of August was busy with getting ready for back to school. Ollie was proud to get his yellow orange belt through Kids Kicking Cancer Canada! 

[Photo Description: Ollie, students and Senseis do pushups while wearing their gis and masks at an in-person class of Kids Kicking Cancer Canada - Ottawa Chapter, while CNIB Buddy Dog Hope lies beside Ollie's mat wedding her yellow CNIB vest.]

All summer Ollie has been attending Kids Kicking Cancer Canada in person at the Maplesoft Jones Centre/Ottawa Regional Cancer Foundation's facility. CNIB Buddy Dog Hope has gone with him and even helped to calm others in the class, so she's invited to all classes that Ollie wants to bring her to now! 

[Photo Description: Ollie sits beside Hope and Child Life Specialist Manon on a gurney in CHEO's Medical Day Unit (MDU) with one arm around Hope, while nurse Kerri gives Ollie the first dose of his last four live childhood re-vaccinations.]

Ollie also got his first dose of the re-vaccinations for the live vaccines (Measles, Mumps, Rubella and Varicella) at the end of August. Only one more set of these on October 31st and he will be fully re-vaccinated! That's 30 doses of childhood vaccines plus 3 COVID vaccines in the past 18 months! He was also told by his team that he could bring his Hope with him for this and any appointment at CHEO where she could be a support to him. As usual Hope was amazingly well-behaved and calmed Ollie like few others can. 

[Photo Description: Abby wears her backpack and stands on the front porch with feet apart and arms crossed on her high school orientation day. The sharing of this photo was authorised by Abby.]

September has been consumed by back to school and starting all of the lessons and activities again! Abby started high school at her special arts school and is settling in nicely. She is becoming more independent and responsible and has an active teenage social life these days, too. We're trying to give her as normal a first high school year as possible given how abnormal the last three years have been for her and all that she's sacrificed to keep her brother well.

[Photo Description: Ollie stands on the front porch smiling and giving two thumbs up, holding his mobility cane with his backpack at his feet on his fussy day of grade 5!]

Ollie started back to school in grade 5! He now wears a size 10.5 men's shoe already and is among the tallest in his grade 5/6 class already. This is evidence that his thyroid growth hormone has been working well (until recently, but we'll get to that a bit later). Kids who have had cancer often either have early onset puberty or do not enter it at all without the help of hormone therapy. His endocrinology team has said that as he's starting to move into puberty, they do not intend to slow it down since the growth is where they want him to be, even if a bit faster than he otherwise would experience it.

[Photo Description: Ollie sits at the dining room table reading his French homework in Braille.]

He's back with his amazing Vision Itinerant teacher Dawne and has a sweet new Educational Assistant (EA), as his awesome EA from last year did an accelerated pilot program this summer to become a teacher this fall. She will be missed, but we are grateful for all that she did for Ollie and know how lucky her new students are to have her. His English and French teachers this year are the incredible teachers that Abby had for grade 6 when Ollie was diagnosed. He also has a couple of subjects with the incredible and kind teachers who were his first visitors in hospital during round one of chemo. His gym teacher was Abby's, too, is his same as last year and was and is so committed to adapting sports for him. He came home telling me about capture the flag and how she had the kids on the other team all wear beeper boxes so that they couldn't sneak up on him and steal his flags because he can't see them. I remain so incredibly thankful for his entire educational support team and all that they do for our boy.

[Photo Description: Ollie stands in the schoolyard  on the first day of grade 5, holding his mobility cane and giving a thumbs up with his vision itinerant teacher, Dawne beside him. Photo shared with permission from Dawne.]

We'll focus a lot on the French Immersion side of the shop this year. Ollie remains behind in this subject area having missed two years of instruction thanks to his treatments and a lack of French instruction in his year in virtual school. Also, apparently blind and low vision kids typically don't do French Immersion (50% of the day in French) - they either do core French (1 period out of 4 in French per day) or are exempted from French altogether in their Independent Education Plan (IEP). 

[Photo Description: Ollie stands outside of the school on Terry Fox Run Day wearing his Fight Like A Kid sweatshirt with the Gold Childhood Cancer Awareness ribbon made by Littlepressco. He holds his mobility cane under his arm and a Terry Fox Run sticker in his hands that reads, "I'm not a quitter. I'm running for...Griffin, Lily and CHEO friends still fighting."]

Ollie was given the option to go down to core French, but was insistent he could do it, so I'm working with his amazing French, Resource and Vision Itinerant teachers to modify the curriculum to set him up for success until he is fully up to grade level in French. It is more challenging for a blind kid to learn French Braille, but he is determined and smart. Last year he fully caught up in two missed years in all other subjects as well as jumped 2 grade levels in Braille, too. All because we accommodated, supported and believed in him. So now we'll do the same in French. And he'll show everyone (as he always does) what resilience and perseverance can do. Ollie inspires me daily to do more than people expect I can.

[Photo Description: Ollie and Dawn pose in front of a Make-A-Wish Eastern Ontario banner at a recent Golf Tournament. Photo courtesy of Sharon Forbes, Make-A-Wish Eastern Ontario.]

That's part of why I do so much advocacy and fundraising for organizations that are important to us. To that end, September was Childhood Cancer Awareness Month, and a busy one it was! 

We started out filling in for another oncology family who was supposed to speak at a golf tournament being held for Make-A-Wish Eastern Ontario, but was admitted to hospital unexpectedly days before. Often cancer families are in this situation and we ourselves have experienced this in the past, too. Ollie and I drew the raffle tickets and spoke about Ollie's story and what his wish meant to him. Ollie caused a flurry of sales when he told the attendees that there were 200 tickets to be sold and they'd only bought half of that and another kid like him might not get their wish if they didn't buy more! 😆 He was honestly so charismatic and inspiring that the entire tournament was in love with him. 

[Photo Description:  A masked Ollie holds a CHEO Teddy Bear in the nursery in the CHEO Dream of a Lifetime Home for 2022 during the official media launch.]

The next week we got a last minute call from the CHEO Foundation asking if we'd fill in for the oncology family that was going to help launch the CHEO Dream of a Lifetime Home Lottery for them. Sadly this family had also been unexpectedly admitted to hospital with illness. Mario and Abby had school and work obligations, so Ollie and I represented. You can see the launch and our interview here. He was a bit tired and shy about the official launch part, but did amazing at the one on one interviews. You can read another account of the launch event with Ollie's interview here. Finally, I did an interview with Sam Laprade on her CFRA An Hour to Give session on the CHEO Dream Home. You can listen to my interview starting at the 33:58 mark.

[Photo Description: Ollie sits in the driver's seat of a golf cart decorated with gold balloons with Sensei Lyne sitting beside him and Dawn standing beside her at the 2nd Annual Kids Kicking Cancer Canada Ottawa Golf Tournament. Photo courtesy of Sensei Reesa.]

Finally, we were glad to be asked to be Ambassadors for the 2nd Annual Kids Kicking Cancer Canada's Ottawa Golf Tournament (no filling in for others this time). This time we got to spend the day in the beautiful fall weather, cruising around in a golf cart delivering food to volunteers, talking to golfers in the tournament and later delivered a testimonial as to the difference that the program has made in Ollie's life. 

[Photo Description: Dawn makes her eleventh blood donation wearing a mask at Canadian Blood Services in October 2022. Her milestone 10th was in July 2022.] 

In addition to all of this, I'm working  full-time, am on various committees and councils for pediatric cancer and blindness and continue to work on several cancer-related studies. It's a lot, but I feel so grateful to be well enough myself to do these things and to pay forward the incredible blessings that we've been given. As we move into the winter some of these commitments will be completed, lightening my load somewhat. 

[Photo Description: Ollie and Dawn are masked and sit on the sofa in the living room of the CHEO Dream of a Lifetime Lottery Home.]

One of my biggest mental loads still is, and likely always will be monitoring Ollie's health. To illustrate how important this remains, even though he is more than two years post transplant we had a little medical issue over the past 6 weeks, too. 

[Photo Description: Ollie has blood taken at CHEO for his thyroid tests in September 2022.]

In the first weeks back to school we started to see little changes in Ollie: 

- Being short-tempered; 

- Waking in the night each night (he hasn't done that regularly in about a year);

- Waking up at 5 am daily after waking in the night and not sleeping his usual 10 hours per night (getting about 7-8 hours per night maximum); 

- Falling asleep in French class in the afternoons and it being really hard to wake him;

- Sleeping 2-3 hours at midday on weekends (normally he insists on staying awake even when he's tired);

- Complete lack of appetite and is having to almost force food down his throat;

- He continued to lose significant weight (he'd lost 9 pounds in the month after stopping his miracle cancer inhibitor drug Lorlatinib, which was expected given other people had after stopping) rapidly;

- Unexplained constipation and diarrhea again when we'd finally gotten bowel movements settled over the past 6 months after 18 months of instability after transplant; 

- Nervousness and anxiety (he'd started getting stressed again about scratching, dropping or breaking things and ask us constantly if he had. He used to do this whenever he was really anxious, but we've worked on it with the child psychologist and in August and early September when he'd gone off of the Lorlatinib it had disappeared entirely, then suddenly came back 6 weeks later);

- Heat intolerance when he'd have his plantar warts lasered, even though he'd done the treatments for a year and never complained that it ever hurt; and

- Night sweats.

[Photo Description: A masked Ollie checks his Braille on the Perkins Brailler in the Braille Room at school. A small black lab stuffie wearing a CNIB vest sits beside him on the table. Photo courtesy of Dawne Smith-Appell] 

It was the meltdowns and falling asleep during the day that made little bells go off on my head in the third week of September. This was just after his school team started wondering if he really was unhappy in French Immersion and suggested we might need to take him out. I started thinking about when we'd seen these symptoms before. At first it was scary because many of them are also symptoms of cancer. But I breathed deep and thought harder and remembered that after transplant when we'd gotten home and started seeing outbursts, fatigue and many of the same symptoms, it was his thyroid causing issues. Then I started thinking about what could make his thyroid meds stop working properly and I remembered that when he'd gained a lot of weight on Lorlatinib after transplant, they'd needed to bump his synthetic thyroid hormone med up because they told me it had to be calibrated to his weight. He'd lost 18 pounds in 2 months, so I realized he was likely experiencing hyperthyroidism instead of the hypothyroidism that he started taking the med for. Essentially I was certain he was taking too much thyroid medication because of his weight loss and this hadn't been flagged as a concern by his team at our last checkup at CHEO in August, even though they'd commented on the rapid weight loss. 

I verified in his MyChart online that they hadn't measured his thyroid levels by checking his TSH and T4 levels in his bloodwork since April. So I sent messages to the endocrinology team and his oncology team to explain and request a blood test. When the nurse practitioner in endocrinology called me back, she confirmed that it sounded like his thyroid was now overactive and ordered the blood test. She also said we would check his cortisol levels at the same time to be sure they were okay. Our team in CHEO's Medical Day Unit was kind enough to squeeze us in on the Friday morning for the test to keep things easier for Ollie to have it in an environment he knew well versus going to the lab directly. Monday I got the results in MyChart before I got a call from the Endocrinologist. Cortisol levels were fine.  But he did have high T4, low TSH. Hyperthyroidism. The Endocrinologist called about an hour later to confirm it, to commend me for seeing it and asking for the blood test, and to tell me she'd send a new prescription to the pharmacy for us that he should start the next day. She said that it would take 4-6 weeks for things to level out on the new meds and if we were coming in for routine bloodwork at the end of October anyways, we'd also check his levels again to see if the levels were normal or we needed to adjust the dose again.

[Photo Description: Ollie wears a helmet and is being silly while riding his Berg peddle go kart at the Central Experimental Farm with both hands in the air.]

So I was able to go back to his team at school and confirm that it was his thyroid, not bad behaviour or boredom. And Ollie insisted he was going to continue in French Immersion even if we have to work harder this year to make up for the two missed years when he was sick. He says if he could catch up on everything else last year after two years away, he can catch up on French this year, even with thyroid issues. 

[Photo Description: Ollie and friends from his Beep Kickball with the Miracle League of Ottawa.The kids are outfield in the last game of the season that was kids against blindfolded parents. Of course the kids won!]

Despite these challenges this fall, my boy has also participated in the Terry Fox Run and made the Cross country running team. He didn't go to the meet, though, as it ended up being the same day as a special event day for the Blind Low Vision program and he attended that event instead, where I'm told he was a real leader and helped the little kids a lot! He's also finished his Beep Kickball season and returned to his skateboarding lessons at The Yard with instructor Jordan. He's even inspired another little friend with vision loss to start taking lessons just before him on Tuesdays with Jordan! 

[Photo Description: Ollie porches on the edge and gets ready to drop in on the bowl at skateboarding lessons at the The Yard. Instructor Jordan holds his hands for balance.]

Mario and I both continue to work from home, with him going into the office the odd weekend day to do server work for a few hours as needed. We are grateful for the flexibility that our employers allow us to work around Ollie's school drop off and pick up schedules, as well as his medical appointments. Having to figure out a one-to-one daycare situation for him as well this year would have been a huge challenge. There have already been a number of days where there has been a shortage of Educational Assistants at Ollie's school and two afternoons that I've had to keep him home for lack of support already. These are the same educational workers that the Ford government and the Education Minister Stephen Lecce are refusing to negotiate fairly with. The same ones that my son and special needs kids like him need to get an equitable education. 

So our work flexibility may be even more necessary in the weeks to come if the mediation fails and educational workers strike. We had so hoped that this year could be completely normal, but between educational worker issues, difficulty getting COVID vaccines that should have been available months ago and more COVID spread, and flu season happening earlier than normal, it looks like we're destined to have another year of disruptions. Still grateful to have these problems than those that we've been dealing with the past 3-years, but wouldn't it be nice not to have to keep adapting?!

[Photo Description: Mario describes a small pumpkin to Ollie and holds it so that Ollie can feel it at the pumpkin patch at Miller Farms.]

So as we cruise into this week, which marks our three year anniversary of landing at CHEO in pursuit of diagnosis, and our twice annual MRI and CT scans to see if he's still cancer free, we once again thank you for continuing to follow our little story. Shockingly we are nearing 400,000 views of this blog around the world in the almost 3 years I have been writing it! Once again, I humbly ask for your ongoing positivity and prayers for clear scans this week. We'll share a short blog post as soon as we have results.

In the meantime, be kind to each other and yourselves, and please don't take any of your blessings for granted. See below for Ollie's recent Thankful Friday inspiration in his class from the day they also did the Terry Fox Run at school. Let us all see the world as Ollie does despite all of the suffering he's endured in his young life.

[Photo Description: Ollie's brailled message for Thankful Friday contribution on Terry Fox Run Day. It reads, " I am grateful for life. I am grateful for friends. Everyday, I am grateful for those who survived." Photo courtesy of Leanne Endicott]

All I Want for Christmas is a COVID-19 Vaccine and a Victrectomy...

[Photo description: Ollie sits in his seat in the van resting his hand on Hope beside him when being picked up from school. The red seatbelt cover has a Medic Alert symbol on it and inside contains details on Ollie' s medical conditions in case of an accident.]

It's hard to believe that we are now less than two weeks away until Christmas again! Getting everyone here into the Christmas spirit has been a bit of an uphill battle again this year, but we've slowly gotten there. 

[Photo description: Ollie sits on the sofa beside a sleeping Hope while playing with a tactile Mini Mini-Golf game on the ottoman in front of him. 

As usual, Ollie was most like me, so was actually interested in celebrating the holidays and helped me to drag Abby and Mario into the spirit. We decorated the last weekend in November - earlier than we ever have. Mario thought I was crazy, but went along with it and tried to get Abby into it. She was reluctant. Digging deeper by talking about things revealed that everyone is now reminded somewhat about Ollie being diagnosed this time of year and having those first rounds of chemo in the weeks before, during and after the holidays. No matter how far away we get from active treatment, there are constant reminders of what we went through in those early days. 

[Photo description: Ollie wears an elf hat and Hope wears reindeer antlers while a roaring fire appears on the TV screen behind them.]

We talked about reclaiming Christmas and trying to think more about how grateful we are that we're all together and he's well instead. It hasn't been easy and there have been arguments and tears to get past this PTSD, but we're getting there. Abby and Ollie are now getting excited that Christmas is almost here as evidenced by them trying to guess what their gifts under the tree are. 

[Photo description: Ollie adds coloured bulbs to the ceramic Christmas tree that was my grandmother's as we decorated for the holidays.]

When he has his moments, Ollie has this incredible way of being able to talk about how he feels when he's feeling big angry or sad feelings and then to just recover quickly after hugging it out and appreciating the good moments that follow. Hope helps him a lot with this process. He calls her especially when he is sad after his anger has dissipated and he needs to move from sadness to acceptance to readiness to be happy again. He just hugs her and within moments he feels ready to face whatever the world throws at him next. As his mama my level of gratitude and love for this gorgeous and sweet-natured canine (who honestly seems to think she's human) knows no bounds. She spends most of her days very close to me at home. Mario laughs that I was the one who didn't want a dog before Ollie went blind and she is now super attached to me and I to her. 

[Photo description: Ollie hugs Hope while sitting on the back of the CNIB Christmas Float before the Carleton Place Christmas Parade on November 27, 2021.]

So it was our great pleasure to be invited to participate in the Carleton Place Christmas Parade with the CNIB Guide Dogs Program and show our gratitude for being part of something so life changing for us all. Ollie was so excited to be part of it and showed incredible patience while waiting for the parade to begin. Hope was so well-behaved despite all of the distractions, especially with so many other dogs around. 

We met several other volunteers who boarded Hope during her time at the CNIB Canine Training Centre. They were all overjoyed to see her and commented on how wonderful she looked, how well-behaved she was, and how well Ollie was doing with her. They are all incredibly warm and kind people who open their hearts and homes to help train guide dogs for blind and low vision people. It's incredibly hard for them to love these dogs and then let them go, but they do it selflessly to make lives like Ollie's better.

[Photo description: The CNIB float for the Carleton Place Christmas Parade is covered in Christmas lights and featured a blow up Snoopy riding a scooter and a decorated Christmas tree pulled by a yellow, white and black CNIB Guide Dogs van. Dawn, Ollie (in orange coat) and Hope are sitting on the float with the program lead of the CNIB Buddy Dog/Ambassador Dog Program, Buddy Dog duo Connor and June with mom Julie and other CNIB volunteers. CNIB Dog Trainers and Guide Dogs in training walked behind the float. Photo courtesy of Allison Noseworthy Warren]

The parade was incredibly well attended with approximately 5,000 people lining the streets. On the one hand this made me grateful to be on the float safely isolated from the masses, but on the other I felt so grateful for this little bit of normal for everyone. Pretty exciting for a 9 year old to be in a parade and we hope to be invited to do it again in future!

[Photo description: Ollie is assisted by Mario and Skateboarding Instructor Jordan as he does his first blind standing ride down a half pipe at The Yard.]

I haven't written that separate blog post about Ollie skateboarding yet, but he's making great progress and it's fun to watch him do something he loves so much and I love the respect that other kids at the skate park show him when they realize he's doing it blind.

[Photo description: Ollie and his skateboarding instructor Jordan are interviewed by Denise Fung of CBC Radio at The Yard.]

 CBC Radio taped an interview at The Yard with him and Jordan yesterday, so listen this week for him on Ottawa Morning! 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Last spring, Make-A-Wish Eastern Ontario asked if Ollie would be willing to be part of the 24 Days of Wishes. Each day in December leading up to Christmas, a Wish kid is featured on Ottawa's CTV News to encourage people to donate to help make Wishes come true for other critically ill children in 2022. 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Ollie's Door Day was December 10th and you can watch the CTV News segment on him here. We remain so thankful for the Wish that he was granted in March 2021 to have an epic playroom and he has literally used it EVERY day since then. It really is the Wish that keeps on giving and he helped the sponsor of his Wish, eQ Homes to make a video to encourage others to help them to Wish It Forward to help another deserving kid in 2022. They just posted today that they met their $10,000 goal to make this happen, so we continue to be grateful to eQ Homes and their supporters who have helped to inspire kids like Ollie with critical illnesses to keep going through all of the hard stuff to get their Wishes.

[Photo description: Ollie gets his first COVID-19 vaccine from a CHEO nurse while stuffie Llama Llama Blue Pajamas is hugged for courage. This red and white shirt reads, " Be a changeable - #sgeochangemaker - St. George Catholic School"] 

On November 28, 2021, Ollie was psyched to finally get his first COVID-19 vaccine at CHEO! Honestly when CHEO called me to schedule it I was teary and when he got it I breathed a deep breath of relief. It's not enough yet and he's scheduled to get his second in January and will get a third after that given his transplant makes him higher risk for COVID, but it is an incredible first step towards all of us feeling less anxiety about him being out in public, including school. Ollie felt no pain (my arm after my booster last week hurt for 4 days, but he says he felt nothing!) and aside from being a bit more tired for 24 hours and asking to go to bed early, he had no side effects. 

I have tried to explain to the naysayers online who cry that parents are "torturing" their children by vaccinating them with an "untested" vaccine that they have no idea what really torturing your child is like. That putting chemo, radiation and truly untested in children drugs into their little bodies to save their lives is torture for them and for you as the parent. And all are in the interest of saving their lives. Just like this COVID vaccine is for Ollie. That both of my very bright and aware children BEGGED to get this vaccine in the interest of protecting each other and trying to live a more normal, less scary life. That if my then 12 year old daughter could legally consent (and she was physically and mentally assessed to ensure that she was okay to consent) to give her stem cells to save her brother's life, she and others like her are very capable of deciding to get a vaccine.  

A few of Ollie's friends who were nervous about the vaccine or scared of needles told us that despite this they were going to get the vaccine anyways because they could be brave like Ollie. And then they sent us messages celebrating that they had done it! Again and again people help us and amaze us with their kindness. To-date in Ottawa 50% of eligible kids have been vaccinated in the first three weeks of vaccination clinics and we are thrilled to live in this community where people take care of each other. 

[Photo description: Ollie sits in an pathology exam chair in an exam room at the Eye Centre at The Ottawa Hospital - Riverside Campus waiting to be examined by Dr. Dollin]

On December 1st, Ollie had another appointment with his retina specialist, Dr. Dollin at The Ottawa Hospital at the Riverside Campus Eye Centre. First time ever for us at Riverside! Have to say, that we preferred it! Smaller hospital and less people at the clinic there as well as more modern facilities! Dr. Dollin verified that the pressure in his eyes is manageable with drops, but that ultimately we'd likely eventually have to do at least the lasering of his eyes to correct the pressure issues and stop unwanted blood vessels from growing and admitted that waiting to see if the blood from his vitreous detachment would dissipate on its own did not work. So the only way to clear out the blood pool and try to recover any of Ollie's peripheral vision in his right eye was to do the vitrectomy surgery. At my encouragement he and Dr. O'Connor at CHEO confirmed later that day that Ollie would have the surgery and to my surprise scheduled him for December 15th (tomorrow). 

He's actually having both surgeries (vitrectomy and lasering) on the right eye. It's just day surgery with the prep and recovery after taking longer than the 1 hour 45 minute surgery itself. He'll be sedated and they have promised they'll manage any pain he might have, but said generally there is more discomfort like a scratchy feeling than pain. Recovery is about 2 weeks, so it's good that we'd just planned a quiet Christmas with just us this year. Ollie is upbeat about the surgery and hopeful that it will allow him to recover a bit more vision. He knows better than anyone that there are no guarantees when it comes to medical procedures and the pursuit of wellness, but despite everything remains his hopeful, positive self and believes it will be worth it. We all feel confident, but would totally appreciate your prayers anyways that all goes well and is easy for Ollie. I'll try to at least write a short update when I can.

In the meantime, we hope that you are having a wonderful holiday season despite COVID-19 and the cases rising again. We all know too well now that while there is nothing like being together in person, there are many safe ways to stay connected to those we love whether near or far. Please get your COVID-19 booster when you are eligible to keep yourself as safe as possible and to help us to keep Ollie and other vulnerable people like him safer.  

Survival and Summer

Photo description: Ollie wears sunglasses and stands with his cane in front of the sign for the Cancer Survivor's Park in Ottawa.

In early May 2020 we came back to Ottawa from Toronto feeling deflated and stressed after missing the first opportunity to get him a lifesaving stem cell transplant when he relapsed a second time in his central nervous system. We spent 8 anxious weeks doing 13 sessions of brain and spine radiation, taking the new drug called Lorlatinib (that they obtained under compassionate grounds and was untested in children) and waiting to see if it worked. On June 24, 2020, we got the news that his scans were clear and he was officially back in remission!!! Last week he was officially one year in remission!!! So he did it again...proved that he could defy the odds and do 365 days of survival after we were told there were "few options left" to treat him after his second relapse. Sometimes I wonder if there's any challenge he hasn't overcome yet! 

 Photo description: Ollie raises his arms in triumph with a big smile on his face while wearing a t-shirt that reads, "Survivor: Cancer. It came. I fought and won."

Remission in this week last year started a new series of anxious weeks getting ready, going back to Toronto and finally getting his stem cell transplant with his sister Abby's incredible stem cells on July 20, 2020.

Photo description: Ollie stands with his cane in front of the Cancer Survivor's art installation in Cancer Survivor's Park in Ottawa. He stands in front of a tunnel of frames as behind statues of patents holding the issues of a child between them after emerging from the cancer journey.

One year in remission sadly isn't enough to say he's cured. I'm not sure we will ever be able to say that as even science doesn't really know who will walk away and never have cancer again and who may get it again. But, it's clear he's a survivor and we're hopeful he'll remain so. He and I made a visit to the Cancer Survivor's Park in Ottawa near the Ottawa Regional Cancer Foundation and took some photos so he'd have his rightful place there.  As I shared in an earlier blog, we drive by this park every time we go/ have gone to CHEO and The Ottawa Hospital and many times during treatment it reminded me that people survive the unbelievable torture and agony of cancer and end up survivors.

Photo description: Ollie stands with his cane in front of the Cancer Survivor's art installation in Cancer Survivor's Park in Ottawa. 

Not surprisingly his survival makes us want to help others to survive their darkest hours and help their children, too. So we were thrilled to share Ollie's story for the 2021 CHEO Telethon, which raised a record-setting $10.9 million dollars!!! 

Photo description: A brown paper bag reads "Ollie +Abby" with CHEO stickers on it.

When Ollie went into CHEO for his regular monthly bloodwork and checkup the day after the Telethon, the staff treated him like a celebrity after seeing his story. He felt pretty proud to be part of it and this helps to boost his confidence.

Photo description: A gift bag including two teddy bears wearing yellow CHEO shirts and purple capes and various CHEO items including certificates for Ollie and Abby was dropped off for them by CHEO after the 2021 CHEO Telethon.

Photo description: Ollie wearing a mask walks the halls of CHEO with his white cane.

He also had an opthamology consult at CHEO two weeks ago at my request. The last time he had one was just after getting back from transplant last September and recently he's complained of things seeming darker again, causing him more fear and reducing his confidence. Naturally that stresses me out more as I worry something is happening in his brain (the fear always immediately goes to a relapse) and he becomes more needy, making my day to day activities with him harder. I'd also noticed a free weeks before that the blue in his right eye appeared to be bleeding out of the circle and into the white of his eye. Thankfully our oncologist always takes me seriously, so when I asked for the consult, she and her team immediately arranged it. 

Photo description: Ollie walks Hope while using his white cane at the Central Experimental Farm near his home in Ottawa.

Dr. O'Connor is the Opthamalogist at CHEO who has seen Ollie for the 17 months since he became blind. He told me this was the best look at Ollie's optic nerves that he's gotten since he went blind. He confirmed that in Ollie's right eye there is the extensive damage they've assumed based on the previous inflammation in that eye and on the scans. He was impressed by how much peripheral vision Ollie actually had in that eye considering that he could see that the optic nerve was almost chewed away at by the lymphoma. He said unbelievably there is still some minor inflammation and bruising in that eye (that's what the blue in his white was!), so it's still possible that he may recover a bit more light/vision in that eye. He told me noticing the bruising was a really good catch that most would never notice. I told him it's now my job to notice every little thing about my son.

He then told me he'd reviewed Ollie's case notes before seeing him. He asked me if anyone at Sick Kids had ever mentioned that Ollie's left retina was detached as he hadn't seen it in the case notes and he hadn't noted it himself last fall. I told him I was certain I would have remembered that! So he said, this would explain the sudden darkness for him and congratulated me in following my instincts to ask for a consult. He's referred us to a retina specialist as we'd like to reattach the retina to avoid pressure issues, for the  chance that he may recover a bit if that vision and just in case science and medicine make it possible for his optic nerves to be repaired one day. As I told the doctor, 60 years ago a stem cell transplant wasn't possible, they're currently using stem cells in the US to regenerate damaged retinas and he's still very young so has a lifetime of medical progress ahead to hope for. Retina reattachment is a relatively quick and easy procedure done through laser eye surgery now. We'll keep you posted on this.

Photo description: Dawn wears a mask and a bandaid on her arm in an arena after getting her second COVID-19 vaccination.

In other news, Mario and I are now double vaccinated and Abby has her first and is awaiting her eligibility for her second. The vaccine still isn't approved for kids under 12 and it will have to specifically be okay for immuno-compromised kids like Ollie before he can get it. We remain hopeful that news will come soon.

Photo description: Abby's arm with a bandaid after she received her first COVID-19 vaccination.

Another beautiful thing that happened to us recently was that my dear friend Vanessa Kelly arrived at my door with a gift of her latest book for me. Vanessa is a USA Today Best-selling Author of historical romances. I have long been a closeted fan of historical romances and when I met Vanessa at my church a few years ago, got to know her and found out what she did for a living, I immediately began devouring her books as my guilty pleasure. Since Ollie got sick she's so kindly brought me advanced copies of all of her new books! So I was excited at this one arriving just as school was out and I'd have a bit more time to read. When she left and I opened the package there was a card for Abby and I with the book that said she hoped we didn't mind that she'd dedicated her latest book to us!

Photo description: Cover of the novel, "The Highlander's Irish Bride" with a photo of a shirtless man in a red kilt embracing a woman in a pink dress. Novel by USA Today Best-selling Author Vanessa Kelly.

So I quickly opened the book to the dedication page and wept as I read her dedication and personal message (see photo below). I was also thrilled to be in the incredible company of our dear friend Maria who does have THE most loving heart around and has been the most generous friend before and throughout Ollie's cancer. She was the one who arranged the meal train and had everyone feed us for the months we were in Ottawa, arranged prayer circles, came to hospital and fed us there, played Beyblades in hospital with Ollie, fed me and sat with me in the pediatric ICU when Ollie first relapsed and Mario and Abby had strep and couldn't come to hospital, etc. 

Photo description: Dedication page of the novel, "The Highlander's Irish Bride". The printed dedication reads, "To Abby A-P, a bright, brave lass, as well as an excellent writer who will adorn the world with her talent. And to her mom, Dawn P, also a bright, brave lass. Your dedication against all nodds defined love and courage. And to Maria C. It's been a true pleasure getting to know your loving heart!" A handwritten note says, "To Abby & Dawn, Real life heroines!  Vanessa XOXO"

To say that Abby and I were touched by Vanessa's love and public admiration through this dedication is an understatement. Vanessa has also been a constant source of positivity and prayer during Ollie's cancer treatment and stem cell transplant and I am blessed by her friendship. I don't know how I got so lucky to have such fantastic people in my life, but I am grateful to God daily for all who have loved and continue to love us. 

If any are interested, her new book will be available to buy on July 27th through Amazon and other book retailers. Warning though - they're addictive so make sure you start it in a weekend when you have lots of time to read! 😉

Photo description: Mario helps Ollie tie on his new yellow belt from Kids Kicking Cancer.

The kids finished off an inspiring year of martial arts with Kids Kicking Cancer with their Yellow Belt Grading Ceremony. Imagine that my blind cancer- and stem-cell transplant surviving son who was in a wheelchair and hardly able to walk to the bathroom last September earned his yellow belt this year! I am 100% convinced that Kids Kicking Cancer contributed so much to getting him to wellness, strength and a hugely improved range of movement over the past 8 months. It's also built his confidence as he gave several talks to senior federal government and corporate leaders on how to overcome challenges and use power breathing to calm your fears and anxiety during these difficult times. 

Photo description: Abby and Ollie show off their new yellow belts from Kids Kicking Cancer.

At Kids Kicking Cancer they tell their powerful martial artists that their mission is to teach the world. He and Abby HAVE been teaching the world how to face adversity with bravery and determination these past two years. Abby agreed to do the martial arts classes simply to help Ollie, but she ended up getting so much more out of it than she expected and was pretty proud of her yellow belt (even if as she pointed out she was the oldest in the class). I couldn't be prouder of either of them or more grateful to Sensei Lyne and Sensei Cody as well as Jill, Julie and all who have worked so hard to bring the gift of martial arts to kids fighting cancer and their siblings in Canada.

Photo description: Ollie rides his new orange BERG pedal go kart while wearing an orange helmet and giving a thumbs up. 

Ollie and Abby ended online school last week. It was not an easy year between cancer/stem cell transplant recovery and the pandemic, but they hung in there and both made some astounding progress considering everything they had to deal with at the same time. One of Abby's teachers really got our situation this year as her son needed a kidney transplant, so she was part of a kidney transplant chain (she was not a match for her son, so donated for another child for whom she was a match and someone who was a match for her son and had a child for whom they were not a match donated to hers). Thankfully both her and her son are also doing well. What a year for everyone!

Ollie's vision itinerant teacher Mrs. Shepherd was retiring at end of this year and no doubt Ollie was one of the most challenging and yet impressive students she's ever had. She says he learned Braille faster than most students she's taught over her long career and I am one of only two parents she's ever known to learn Braille with their child. She was a gift to us with her expertise and determination to get Ollie into advanced (called grade 2/contracted) Braille and back on track for school next fall with his regular class (assuming it is safe enough for him). Ollie was genuinely sad to hear that she would be retiring and wouldn't be his teacher again next year, but we know he'll be in great hands with his next teacher given the great transition Mrs. Shepherd did. 

Photo description: Ollie gives two thumbs up while sitting in front of his 9th birthday cake about to blow out the candles.

In addition to his remission anniversary and end of the school year, it was also Ollie's 9th birthday last week. Since we knew it would be another fairly quiet one with only a small family party and we promised to have a real party for 9.5 or whenever it's safe to, Ollie got an extra special present in lieu of a party. 

After much discussion about his desire to ride a bike again (and he meant alone, not tandem) and deliberation about the merits of a three wheel bike vs. tandem bike vs. other options, we finally agreed to buying him a pedal go kart. Since it's hard/more dangerous for blind/low vision people to ride a bike independently, he agreed this would be a great and exciting alternative. We take it out to the Central Experimental Farm near our house and he's had a complete blast on it, being so much more confident than we expected. We do have to give him a bit of verbal feedback if he's getting close to an obstruction or hill, etc., but otherwise it's all him and you can tell he feels free and like a completely normal kid when he rides it. 

Photo description: An ad for the Great Make-A-Wish Campout that reads, "I've accepted Oliver's Campout challenge...Now I'm challenging you!" With photos of Ollie from his Wish Day and Abby camping last year for the event.

In honour of Ollie's birthday, and of our dear friend Hillary McKibbin's birthday, (which is the same day as Ollie's!) the two kids were Co-Wish Ambassadors for the Great Make-A-Wish Campout last weekend. Although it rained most of the weekend, we had some fun and raised some money to Wish It Forward for other kids with critical illnesses. Thanks to all for your generous donations for our many causes. We're taking a break from financial donations for a bit now...

Photo description: Ollie and his CNIB Buddy Dog Hope stand in front of the Canadian Blood Services sign as it flashes, "Blood for Life".

...so now all we want is your BLOOD! 😄 In honour of Ollie's upcoming  re-birthday (1 year anniversary of his stem cell transplant) and his sister's Hero Day (when he got her lifesaving stem cells) on July 20th, we're doing a blood donation clinic from July 19th to 24th. When Ollie was sick he got every blood product there is multiple times including blood, plasma, IViG and stem cells and each one saved his life every time. In gratitude we want to help to save more loved ones like Ollie with blood donations. 

We're hoping to get 100 donations. You can join our campaign from anywhere in the country and new donors are welcome. It's safe even during pandemic. I have donated every 84 days as I am allowed since Ollie got home from transplant last September. It takes less than an hour and you could meet a friend there to chat and catch up during your collection as I have! 

To join our campaign, simply:

1. Register or sign in if you're already a donor and have an account.

2. Select "Partners" from the menu.

3. Search "Donate for Ollie & Abby".

4. Book an appointment to donate between July 19th to 24th.

If you prefer you can also call 1-888-2- DONATE and ask to be added to the "Donate to Ollie & Abby" campaign that week. 

If you can't donate, please share this with others who might. If your loved one is ever critically ill or in an accident, you want to know that blood will be there to save their life. I have sent silent prayers of thanks to the kind donor each and every time my son has been saved by a blood product. What an incredible country we live in that you can count on free lifesaving blood!

After this campaign we're going to take a little break from giving back to recharge. I sometimes forget that we went right from cancer to stem cell transplant to school and "regular life" so rapidly last fall with no time to process or rest. We plan to do that and only that for August to ready for the next transition back to in-person school in the fall if it's safe enough for Ollie.

Wishing you all a beautiful beginning to summer. Don't forget to find the joy in life every day no matter what your challenges may be. It's there if you look for it and helps you to survive even the worst things you can imagine.