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. 

Final Test of the Success of the "Abby Treatment"

[Photo Description: Ollie lies in the CT scanner with his feet going in first and his arms above his head.]

Yesterday we finally got those elusive scans following an extra month of "scanxiety" after we had to delay first for a cold and then we got bumped last week because 4 CHEO MRI technicians were out sick last week with COVID-19. This made for a very tense month around our house as we waited for illness to pass and for scan day to finally come..

It didn't help that Ollie's cold was in his sinus and caused eye pain, eye goop (diagnosed as viral conjunctivitis) and headaches, when in the past symptoms of his relapses were eye pain and headaches. 

[Photo Description: Ollie readies to have an IV inserted in his arm]

As always Ollie was amazing at getting through his scans day. Handling the IV insertion like a total pro, drinking the yucky contrast for 3 hours and waiting patiently for his turn.

While waiting and drinking he had a great session with his original child psychologist who is back from mat leave and couldn't believe how well-adjusted and amazing he's doing after everything he's been through. "The rumours really are true, Ollie. You're amazing!", she teased him.

[Photo Description: Dawn wears a mask and bears her arm to show a bandaid after getting her flu shot at CHEO]

I snuck off during his session for a short while to get a flu shot while there because I am a CHEO volunteer for the Oncology Patient and Family Advisory Council (PFAC) and the Research Institute. I had tried to encourage Ollie to be with me later as I took my turn being poked for once, but he had little interest. 

[Photo Description: Ollie is dressed in a hospital gown and pants and wearing a mask with a masked Dawn seated beside him defile waiting for his MRI at CHEO.]

We had to wait a bit for the MRI, so he was getting tired by the time they took us and had to lie still for 1.5 hours while they did full head and body scans. By the end he was getting wiggly and uncomfortable, but he hung in there. As usual I sat on the very hard plastic chair and prayed a lot. Naturally for my Ollie' s wellness, but also for other CHEO warriors like Griffin who was starting his chemo for his stem cell transplant at Sick Kids Hospital yesterday, too. 

[Photo Description: Dawn poses for a selfie wearing her mask and standing in front of a creepy clown painting in CHEO's MRI waiting area. Clearly Dawn is not generally a fan of clowns, with CHEO's now retired therapeutic clown Molly Penny being the exception.]

Totally worth the discomfort and seemingly never-ending wait as we got great news today - CLEAR SCANS!!! No evidence of disease after stopping the miracle drug Lorlatinib 93 days ago that has been our insurance policy against relapse for two years. So now we know definitively that the transplant with Abby's amazing overachieving half match stem cells was a real success! I've pretty much been in tears all night once again over the gift she's given him, and the gifts that God has given us.

This was a huge milestone to pass! There were minor things seen in the scans, like evidence of the sinusitis that he's had for the past month and inflammation still in his left eye that he had surgery on 4 months ago, but all exactly what we would expect to see and they said it was otherwise unremarkable. Unremarkable is amazing news in the cancer world! 😆

Monday we're back at CHEO for bloodwork and checkup, plus his final 3 doses of his childhood re-vaccinations after transplant. We're also sending his blood to Germany again to participate in an Anaplastic Large Cell Lymphoma (ALCL) study and to do the Minimal Residual Disease (MRD) test that can detect if there is any evidence of cancer cells left in his body. If this test is negative like last time, we rejoice. If positive we have decided with his medical team to put him back on the Lorlatinib as we won't take the chance of relapse again. Wish us luck, but honestly we're feeling pretty positive and hopeful right now.

So thank you all for your positivity and prayers. God and science are so unbelievably great and we are divinely blessed. If you could, please send some prayers for Griffin and his mama Tamy for a successful transplant. He's been battling off and on the past 4 years of his almost 6 years of life and deserves to get to true wellness, too. 

The Epic Masked Stem Cell Crusade - 2 Years Later

[Photo description: Ollie is on ice skates again for the first time since going blind in January 2020. He is wearing a hockey helmet with face mask and holding his white mobility cane with a Dakota tip on it.]

Almost two months have flown by since we last posted an update! And it seems fitting to post today on the two year anniversary of the day that we left for Toronto to start Ollie's stem cell journey that would begin really well (despite the pandemic's arrival at the same time) with Abby's donation on March 31st, take us on an unexpected detour just days later when he relapsed a second time and would eventually need brain and spine radiation and a brand new drug untested in children obtained under compassionate grounds when the first and approved "miracle drug" didn't work for him, and eventually lead us back to a successful transplant in July 2020 and an incredibly smooth recovery to-date. 

In fact today Ollie is +610 days since transplant and the stress of just trying to get him through all of this and past the first critical 100 days after transplant seems decades ago to my brain and yet like yesterday in my heart. Especially this week as we heard that another CHEO and Sick Kids transplant family lost their brave warrior after 10 years of battling and over a year of post transplant complications that his poor little body just couldn't overcome. Another child taken unfairly and too soon, and a poignant reminder of how blessed we have been. All of our sacrifices have been worth it to keep him and some sacrifice so much more and still don't get to keep their babies. Please pray for the family of Mackenzy who have sacrificed SO much, but are so grateful to have had the past 10 years with their angel before letting the Creator take him to paradise.

It also reinforces why we are continuing to be diligent and masking (at least for a while) even after the mask mandate was dropped in Ontario this week. We continue to evaluate our risks, mitigate them where we can, sacrifice where needed. I just can't remove all protections and hope for the best yet with all that we have experienced and seen. Despite all of this we still live full lives of joy and gratitude because we understand too well how close we've come to the complete devastation of losing our child. There but for the grace of God go I.

[Photo description: On the left is Ollie's now well-loved official hockey puck from the Canadian Blind Hockey Association, which is about 3 times the size of a normal puck, is made of metal and has metal balls that rattle. On the right is a normal sized puck for perspective.]

These past two months since we last updated have been healthy and filled with busy activities like ice skating, playing hockey, and trying cross-country skiing with Ollie's class to name but a few! The kids have been blessed to attend a school in an urban area with a huge green space nearby so that they get to enjoy it at school often. From skating at nearby Champlain Park to cross-country skiing on the nearby KichiSibi Trail, Ollie's teachers have taken full advantage of the beautiful winter and gotten them out regularly to enjoy it. 

[Photo description: Ollie plays hockey with school friends at Champlain Park during outdoor gym class. Since Ollie is still learning to skate again since going blind, he opted to wear ice picks on his boots to enable him to keep up with class mates as they played.]

Given I have been in my last months off on leave, I took the time to go and help with Ollie so that he could experience it all safely and I could learn how to better support him to do it all with his peers. I remain grateful to his teachers and educational assistants who always help us to find a way to ensure his safe inclusion in every activity. Having a bird's eye view on how he interacts with his peers and vice versa has also been tremendously comforting. I am so happy to report that his friends go out of their way to help him and include him in all things. The very first day he was on skates again, two of his closest buddies were never far from his side, encouraging him and praising him for how well he was doing, saying how much they knew it was so much harder now that he was blind and he was doing it anyways. I was in tears and sent messages of gratitude to each of the boys' parents to thank them for raising amazingly kind humans. 

[Photo description: Ollie learns to cross-country ski on the KichiSibi Trail with his class, while assisted by his Educational Assistant, Mrs. Taylor.]

I know from experience with Abby already that these years where he'll want me to come to field trips and special events with him are for a limited time only and will end too soon, so I am so grateful for this time with him. And for now as he gets used to doing everything blind and all of the firsts are happening, it comforts us both to do it together. 

Thankfully while we cautiously participated post-Omicron, Ollie was happy to continue wearing his mask even outdoors and we were able to do all of this with relatively low risk for Ollie. 

[Photo description: Abby gets her COVID-19 booster at the #Jabapalooza vaccine clinic for immuno-compromised families in early February 2022. Dr. Nili Kaplan-Myrth and her team has organized vacination clinics for the vulnerable across Ottawa since vaccines were first available and actually gave Abby her vaccine. It was an honour to meet her and Abby even allowed her to take and Tweet out this photo of her!]

Abby has been so much happier being back at school, although in the past two weeks as it was announced that vaccine mandates would be removed in schools, she was highly anxious about it. She wants to keep her brother safe, but also wants to be "normal" and doesn't want to be the only "alien" wearing one. Thankfully there were 14 kids in her class (of 28) today wearing them and ALL of her teachers did as well. We remain thankful for all of these people who are protecting themselves and others like Ollie. We totally get that others want to get back to "normal" and hope that someday soon that will really be possible for everyone and not just because our provincial premier is looking for votes in an election that will be called any day now.

[Photo description: Ollie does a snow angel in the park on a sunny day as friends hold a Childhood Cancer Awareness flag nearby.]

We've been pleased to support the 5th annual Snow Angels for CHEO (#sa4cheo) this year again (our second year involved) to raise needed funds for CHEO's Oncology clinic and ward. The money is still being tallied as the campaign is just ending now, but it looks like the best ever result so far with more than $12,000 raised (last year it raised $8,000)! 

[Photo description: CHEO Bear and Ollie dressed as Cookie Monster and wearing a mask on his face give thumbs up while CNIB Buddy Dog Hope in her CNIB yellow vest sits at their feet.]

Ollie even got to participate in an event where most of the volunteers and CHEO Families featured in this year's campaign got together at CHEO with CHEO Foundation staff to make snow angels. Even Buddy Dog Hope came along for the fun! 

[Photo description: Ollie does a snow angel in his Cookie Monster costume at CHEO.]

[Photo description: A peanut butter and banana sandwich with a dog biscuit sticking in the middle made by Ollie as Hope's birthday cake for her third birthday on February 28, 2022.]

In late February we celebrated Hope's third birthday and in early March we celebrated one year since her "Gotcha Day" when she came to us! She has been among our greatest blessings over the past year and the confidence she has helped to bring out in Ollie since then is evident everyday.

[Photo description: Hope lies on her bed with her new football chew toy from Ollie on her 3rd birthday, February 28, 2022. A birthday sign made by Ollie is stuck to the wall above her head.]

Hope will be donating blood again for the Canadian Animal Blood Bank on April 2nd at the CNIB Canine Centre. Her (and Ollie's) summer is also shaping up pretty great as she'll be at CNIB Lake Joe a couple of times with the whole family and with Ollie and all Ontario CNIB Buddy Dog duos! 

[Photo description: Ollie and friends sit in an arcade race car game at a recent birthday party.]

Ollie got invited to a dear friend's birthday party recently and had a blast at laser tag. Mom had to tag along to be his audio guide and eyes, but he had so much fun! After the party in the arcade (it was way quieter in there after the party as it was dinnertime for most so it had cleared out) his friends grabbed Ollie's arm and lead him around the games, explaining everything and helping him up into some of the games. I watched in awe as 9 and 10 year old boys took responsibility for his safety and helped him to just be one of the guys. 

[Photo description: Ollie and friends straddle a motorbike racing arcade game at a recent birthday party.]

As a parent of a special needs kid you fear so much that your child will be excluded or made to feel less somehow. Even though we have built him up over the past two years to feel that he is NOT broken and still a normal kid who just needs a little accommodation or modification to do the same things as the other kids, I've worried that this would not be enough and his tender heart would be hurt by those who don't understand. So grateful that my fears were for the most part unfounded and he and his friends have all adapted so well and normalized it all for themselves. Kids are incredible when we teach them to accept and adapt.

[Photo description: Ollie stands in the kitchen holding his last cane bought in August 2021 and his new cane that just arrived. The old cane was a custom red for Ironman and the new cane is a blue and red homage to Captain America. He has grown so much in the past 7 months that his new cane is 6" longer than his last!]

Ollie is growing rapidly both physically and intellectually. We just received his new cane. His old one was bought 7 months ago and was 44" and his new one is 50"! Some days I wonder if the radiation he's had from treatments have made him a mutant as his feet have also gotten huge and he is now wearing a MEN'S SIZE 9 shoe!!!

Intellectually he is doing fantastic at school and is completely caught up with his peers despite missing the better part of 2 years of full-time school. He also recently had a Braille reading assessment. At the beginning of the school year his Vision Itinerant did a benchmark assessment and found that he was reading Braille at about a grade 1 level. Not surprising as he'd been a late reader before cancer and had just finished grade 2 a bit behind the average in reading independently. Plus his spelling was behind from missing so much school over the past two years. The latest assessment showed that he is now reading Braille at a grade 4 level!!! So he's advanced 3 years worth of progress in 6 months. A powerful combination of determination and a great teacher have made all the difference and his dedicated vision itinerant teacher last year focusing on his Braille literacy so he'd know it inside and out this year gave him an incredible basis to quickly launch from this year!

[Photo description: Matt Bennett, Senior Director of Corporate Partnerships and Consumer Products for the Ottawa Sports and Entertainment Group that includes the Ottawa 67's and the Ottawa RedBlacks sits in the stands at a recent Ottawa 67's game to bring Ollie a new 67's jersey with his name on the back and his favourite number 7. Friends and our family look on.]

During March Break we were invited to attend an Ottawa 67's game and bring some friends. Matt Bennett had heard that the 67's jersey that they gave Ollie when he was relapsing in Toronto (when Ray Skaff from Gabriel Pizza brought us pizzas and presents like the jersey) was now way too small and he told me to bring Ollie and he'd have a new one ready for him! 

[Photo description: A bald and relapsing Ollie wearing his first Ottawa 67's jersey in April 2020 in Toronto on the left and Ollie today wearing his new 67's jersey and a Canadian Blood Services Hockey Gives Blood hat at the recent game on the right.]

 The 67's game was our first public event in 28 months since diagnosis and we figured we'd better get out before the mask mandate was dropped and so many would be out without them, putting Ollie at greater risk. 

[Photo description: Mario helps Ollie to put on his new 67's jersey. the back reads, "OLLIE" and has the number 7 on it, which is Ollie's favourite number and has actually been retired by the 67's in honour of two previous players.]

[Photo description: Ollie braces for his third COVID-19 vaccine at CHEO.]

Also during March Break, Ollie got his third COVID vaccine at CHEO. Because he's immuno-compromised, he needs three instead of two for the initial doses. Now we wait two weeks for it to be effective and pray that he has an antibody response similar to others with a healthy immune system as many with compromised immune systems have even less effectiveness. 

[Photo description: Ollie wears his One Year in Remission t-shirt at CHEO while holding his mobility cane and a stuffed dog that he got after his third COVID vaccine.]

We've also recently reduced his t-cell kinase inhibitor (TKI) drug Lorlatinib from 100 mg to 75 mg in hopes it will reduce the hunger, weight gain, and paranoia he's often experienced on it. Since stopping two weeks ago his appetite has gone down significantly, and he seems better able to cope with most of his anxiety. He has MRI Ave CT scans scheduled for April 13 as part of the twice annual scanning that we have put into his post-treatment plan/roadmap that Dr. Abbott and I have agreed to. Hopefully it will confirm that he remains in remission with no evidence of disease. The plan is still to take him off of the TKI in July after two years and that will also allow us to give him his final re-vaccines (he can't get the live ones - measles, mumps, rubella and varicella - until two years post transplant and he's off of the Lorlatinib). Then we'll know for sure if the transplant really was successful or if it was the Lorlatinib simply holding the lymphoma back. 

[Photo description: Ollie and Mario give thumbs up while Abby and Dawn stand beside them. All are wearing face masks and Medieval Times crowns.]

We also decided to go to Toronto for the last few days of March Break to "Take Back Toronto" so that the kids no longer associate it with illness and isolation after the 5 months we lived there during transplant. The kids were begging us to go somewhere and again, we knew it would be harder once the mask mandate was dropped. We deliberately chose a hotel far away from downtown in the north end of Toronto that was very quiet. 

It was a fast couple of days so we didn't really get to see more than one family of friends who supported us so much through cancer and moved to Toronto this school year. It was lovely to see them, though and as always they were super careful to keep us as safe as possible. We were so glad to see them and miss them a lot. 

[Photo description: Dawn and Abby about to eat dinner at Medieval Times are wearing crowns and Abby is hiding her face behind a light up unicorn sceptor.]

We did a bunch of shopping (Abby was SO happy) and had takeout from the few favourite restaurants only found in Toronto.

We went to one public event which was Medieval Times as we'd promised Ollie long ago before cancer and never made it there. We also figured big arena was better than small restaurant, picked a mid-afternoon seating to avoid big crowds, asked to sit in the accessibility section far away at the back to be away from most other people and wore our masks except while eating. The kids actually had a blast (even Ollie who didn't think he would and was initially bummed not to be able to see it) and we spent a small fortune on unicorn adaptors, light up swords, as well as wooden shields and swords. Considering how little these kids have been out in public the past two years and all of their entertainment has been online, this seemed a small price to pay to make the event as fun as possible! 

[Photo description: Ollie shows off his new Medieval Times Shield and sword in the hotel room in Toronto at the end of March Break 2022 while Mario photo bombs in the background with his tongue sticking out.]

And this week they were back to school after careful consideration given the removal of masking in Ontario schools and public places today. I did an interview with CBC Ottawa Morning today to talk about the unique position that immuno-compromised families like ours are in with this change. They also published a print article about it here. Tomorrow I'm doing another interview. Not trying to stop anyone from living their mask free life, simply raising awareness of what it's like for immuno-compromised families and why people need to be humane and kind and respect that not everyone is in a situation where they can simply get on with maskless life and accept the risk of COVID.

We will continue to wear our masks and mitigate our risks for the next few weeks as we wait for Ollie's third vaccine to become effective and to see what happens with COVID cases and the Ottawa Wastewater Meter to determine when it may be safe enough for our family to remove our masks, too. If cases rise suddenly like they did with the first Omicron variant (reports of hundreds of thousands of kids in England having the new variant and it multiplying three-fold in two weeks are just now coming out) we may be forced again to isolate, but we sincerely hope that this time the modelling gets it right and it will not be as bad as the first Omicron wave was.

[Photo description: Ollie kneels in the kitchen floor to give Hope a hug.]

In the meantime, please take care of yourselves, get boosted and get your kids their shots if they are eligible and not yet fully vaccinated. Ollie has now had 19 vaccines over the past year (3 COVID since December and 16 other childhood re-vaccines since February 2021). We can honestly tell you that science works and your children are more likely to avoid serious illness and death when vaccinated. I promise you that you never want to be in the position where you are sitting at your seriously ill child's bedside praying for their survival and wishing you'd done more to keep them well.

To those still masking to protect families like ours, I am as always so grateful for all that you do to help us keep our Ollie safe and well. To everyone, please be well and stay safe.

Fighting the Bah Humbugs

Wow! December 1st already! The days have been so busy that I haven't had time to write anything in over a week. It feels foreign not to write now. Like part of Ollie's story is being omitted, but truthfully, he is doing so well and the story has become kind of routine for now.

 Other than routine bloodwork and check up at CHEO every second Monday, he's only had a pulmonary test last week. Ollie was super calm and sailed through it no problem. His breathing and lungs look normal and so much better than when we last did this at Sick Kids. He was relapsing the second time then before his first failed attempt at getting the stem cell transplant and he had major shortness of breath. So no permanent damage to his lungs now! Yay!

We're still eating a lot of Ollie's Pizza from Gabriel Pizza, only lately it's customized online to add pepperoni to it, too! If you are in Eastern Ontario and haven't tried it yet, there's still time and don't forget it helps Candlelighters Ottawa to help families like ours fight cancer.

There's still exciting moments like receiving an unexpected package from Louise from Brampton (Google her!) who has been so kind to Ollie and Abby as one of her many random acts of kindness in honour of the little innocents taken too soon at Sandy Hook. The package came at just the right time for Ollie who was feeling "glum" about Christmas this year. Even though he's well he knows we can't see family this Christmas because of COVID-19.  

We did start decorating for Christmas. Neither of the kids have been into it much this year. I'm really trying to bring the Christmas cheer, but so far it's a slog. Wish me luck!

Funny thing is last year at this time we were in hospital for 12 days for round 1 of chemo. AND Ollie landed back in hospital for 4 days just before Christmas with an infection, only getting home on December 23, but Christmas was still joyous because Gamma and Bumpa came. They helped us to bring some festive atmosphere and to squeeze whatever joy we could out of it even though cancer was still new for us. In an incredibly bizarre way, last year was one of our best Christmases because we took nothing for granted and simply tried to find joy in anything we could.

So we're slowly injecting Christmas. Like putting up my Grandma's tree from my childhood.

And setting up our usual artificial tree,  thank goodness as we wouldn't be allowed to have a real tree anyways with the need to keep bacteria, mould and mildew away from Ollie's still developing immune system. I am grateful right now that we have very few plants and most are cacti.

 

So our tree is up, but not decorated yet because I want the kids to do it with us and they're not feeling it yet. Maybe we'll each add one item to the tree each day and talk about the ornament's significance or why it brings joy until the tree is decorated...in the meantime, Chewbacca has claimed it.

This one cracks me up...still wearing the Halloween shirt and now grudgingly adding the elf hat...

The past week Ollie has also be practicing with his cane on the many mild days we've had. We learned a few things. First that the repair at the end of our street obstructs the lines Ollie and other blind people need to tell them they're getting close to the end of the sidewalk. Thankfully when I contacted our City Councillor about this, he and his office staff immediately agreed to get the City to fix this ASAP and to put up a solar-powered speed radar in hopes that will slow cars down on our stretch to make it safer for Ollie. We are grateful to Jeff Leiper and his team for their assistance in keeping our Ollie and all blind and low vision people in our neighborhood safer.

We also learned that to make the audio signals go at the traffic lights, you have to hold the button for 5 seconds. There is Braille on the button that tells you North-South or East-West directions. There's also often a big tactile arrow now to further assist blind and low vision people in knowing which button goes which way. Then there are different audio tones for North-South (Cukoo-Cukoo!) and East-West (Chirp! Chirp!)! Mind blown! I never thought to wonder why there seemed to be different tones!

Ollie's still working on becoming more independent. He can now use this

pouring device to pour his own drink and know when it's getting to the top! Once the liquid reaches the prongs on the inside of the glass it starts beeping and buzzing. It scared poor Ollie the first time and he spilled his milk! Second time was the charm, though and he's mastered it now.

With a little help from his vision itinerant teacher he just finished reading his first full Braille book on his own! My how far he's come for a kid who just started learning Braille this summer!

She also sent him a tactile ball with a tether he straps to his wrist and now he can play catch with me or toss his ball against the wall and easily find it again! He LOVES it. Laughed out loud in glee the entire time we first tried it.

And we commissioned our dear friend Sohail (who is a talented welder and metal fabricator) to make us some railings for the deck and front porch to make it easier for Ollie to go up and down confidently without assistance. This will be helpful when the epic accessible play room out back is ready (big reveal to come early in the new year!).

Abby is liking online learning a bit better now that they're doing more interactive things like science experiments (wish they teach them to clean the kitchen after!) and they're using online breakout groups and she's getting to know some of the kids in her class better. She currently has only two friends from her actual school in her virtual classroom.

And she's still helping Ollie to do karate and actually benefiting from it herself, too.

The last few days she just felt like dressing up, so she did and put all of us jeans and track pants wearing folks to shame.

Mario is super busy at work. Still working from home mostly with the odd day where he has to go in for a contractor to do work or to pick up or drop off a piece of equipment. His days are longer than normal, but I know he's trying to make up for the many days over the past year where he put in shorter days to come to hospital to see us or to be there for big procedures and tests. We are grateful for the flexibility of our employers and the fact that they never had an issue with us prioritizing our son's health over work. It's shocking to me that some employers would not be as understanding to an employee with a sick family member.

As for me, I'm good most days. Some days are great, like this one where we played in the snow completely joyously, without worry about Ollie's health. Others are overwhelming and hard. I've finally finished the paperwork and obtaining documents for my next EI claim and my LTD claim. Service Canada advised me to go for both at same time and decline one of I get both. Hopeful we get one as my 35 weeks of caregiver are now done and I am without income. Thankfully I also got our taxes done with the help of our terrific accountant, so the return from last year should help us bridge this period. We are grateful that we have not had to take on much debt to-date as a result of the generosity of people and support from charitable organisations. 

I also had an interview with the new chair of the parent advisory council for Hematology and Oncology at CHEO and the Director of Hematology and Oncology. They're looking for new members and I'm thrilled to be joining them. As it happens, we met the chair while inpatient on 4 North and she's currently at Sick Kids with her daughter who had a bone marrow transplant almost three weeks ago. She was so kind to me and told me that she'd been referred to our blog when she was looking for current info on BMT. She said she'd been afraid of BMT, but started reading and found it so helpful that she read the entire blog! She told me that she felt I was writing exactly how she felt and what she experienced with her daughter's journey and she was at least one person helped by what I wrote. I was in tears. As she said, we are bonded in the same club that none of us ever wanted to join. I got a message from her today that her daughter's counts are going up and she's engrafting! More happy tears! I have an overabundance of these lately.

Mentally we all have our moments. Break downs, outbursts, sensitivity, overreaction, unexplained sadness or depression, anger...they come at the most bizarre times, but thankfully we seem to be taking turns as opposed to all melting down together. LOL The therapy is helping and even Ollie seems to see the value in it. We bumped into our social worker last week at CHEO and when she asked how he was feeling, he told her angry and sad sometimes and maybe he should come and see her. She immediately said she would and asked me to set up a time. 

He's a different child emotionally than he was a year ago when he NEVER wanted to talk about his feelings and it was a revolving door of social workers, psychologists and psychiatrists trying to talk to him over the past year. This tells me he's going to be okay because he wants to be. He knows he'd rather be happy and the only way to get there is to get the bad feelings out. If only adults understood this as well as he is starting to.

I'll likely write more later this week to finally share what Abby's been up to with CBC. Stay tuned!