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

It has been 6 months since I wrote a blog post as with Ollie's many activities these days,  we share more regularly on Instagram and other social media (follow Ollie @cnib_ollies_hope for regular updates), but we needed to mark the occasion of the fourth anniversary of Ollie's stem cell transplant with Abby's beautiful lifesaving half match cells today.  

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

To refresh your memory,  Ollie was diagnosed at CHEO with Anaplastic Large Cell Lymphoma ALK Positive in November 2019 when he was 7 years old. After two rounds of chemo he suddenly relapsed in his central nervous system and went blind.  He had a short stint in the PICU, and he got back into remission just as the pandemic hit.  Because of the pandemic we were unable to use one of the three perfect stem cell matches on the international registry,  so our then 11 year old daughter Abby became his half match (haploidentical) match instead.   

We moved to Toronto at the end of March 2020 and Abby had her beautiful cells collected at Sick Kids Hospital on March 31, 2020. He was supposed to get them April 16, but by April 8th had relapsed again in his central nervous system. We tried more intrathecal chemo and a cancer inhibitor drug (Ceretinib) that didn't work for him. I had an agonizing conversation with our transplant/oncology team at Sick Kids about how there were few options left and maybe we should think about not treating him and causing him more pain or sudden death.  I raged against this and told our team we were going to try any, and all options left before we'd be done.  

Back to Ottawa we went to try 13 sessions of brain and spine radiation and a drug which was never tested in children (Lorlatinib), obtained under compassionate grounds from the manufacturer. Blessedly, this worked and got Ollie back into remission and on to transplant. We moved back to Toronto in early July 2020 and after 6 sessions of total body radiation and 2 days of chemo, got his transplant on July 20, 2020 with Abby's incredible cells.  You can read about Ollie's journey on our blog and about his transplant day at Sick Kids Hospital here. 

Four years ago when his future was a big question mark and the world was topsy turvy during the pandemic, we could not have imagined how he'd be thriving today. His recovery and his adapting to his blindness and showing everyone all that he can do have been extraordinary. Each year on the anniversary of his stem cell transplant, we share an update on how he's doing for all who have helped to get him well with their support, medical service,  prayers and love.  

Over the past year here is how Ollie has lived his best life and made his mark on the world:

- Officially ended treatment at the end of three years post transplant in August 2023 and has remained stable without any new medical issues over the past year.

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

- Was part of a panel of speakers (with mom) on patient-centred care for the SIOP international pediatric oncology conference held in Ottawa in October 2023.

[Photo Description: Ollie and Dawn pose among a large group of speakers and moderators from the patient-centred care panel at SIOP 2023.]

-  Played on his school's floor hockey team,  and was part of their Track and Field and Cross-Country teams,  running with a sighted guide. In addition,  he also played another season of Beep Kickball with Kids from the Ottawa vision loss community,  participated in a paraswimming program at Carleton University, and learned to play Goalball this spring from members of the Canadian Paralympic Team who will compete in Paris in the coming weeks.  

- Inspired a skateboarding program for youth with vision loss in Ottawa through the CNIB and the Ottawa Skateboarding Association and is helping to teach the program,  too!

[Photo Description: Ollie demonstrates a skateboarding move on the half pipe ramp at Ottawa's Lansdowne Park with his instructor Jordan nearby and other youth with vision loss watching.  He is using a mobility cane while skateboarding.]

- Helped to launch the CNIB's Children's Charter of Rights and new strategic plan with the goal of "Our kids will thrive." Spoke with mom Dawn at the CNIB Toronto event and at the Ottawa event on Parliament Hill. 

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

- Played in his second season of Canadian Blind Hockey and his first season as a goalie with the Ottawa 67s Blind Hockey Team.  He also played in the Canadian National Blind Hockey Tournament in Toronto in March 2024 where he is one of only 3 youth Blind Hockey goalies in the entire country, and the youngest ever goalie to play Canadian Blind Hockey. 

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

- Was a CHEO Kid Ambassador for the annual Snow Angels for CHEO fundraising campaign for the 4th year in January 2023.  Watch his snow angel making in his bathing suit here.

- Participated once again with CNIB Guide Dogs and his CNIB Buddy Dog Hope in the Carleton Place Holiday Parade in November 2023 and the CNIB Buddy Dog Camp in Muskoka at CNIB Lake Joe in August 2023.

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

- Was featured in the Leukemia and Lymphoma Society of Canada's national campaign in May-June 2024. Dawn sits on the LLSC's Parent Advisory Committee and has been helping them to develop new pediatric cancer supports as well.

- Spoke (with mom) to Executives at Canadian Blood Services at their annual leaders summit in Ottawa in May 2024.

[Photo Description: Ron Vezina, VP of Public Affairs,  Dawn,  Ollie, and Dr. Graham Sher, CEO are arm in arm at the Canadian Blood Services Executive Leaders Summit in Ottawa in May 2024.]

- Was confirmed in May 2024, to fully complete his baptism in the Catholic Church. He chose this because of the deep faith that he has, having survived so much thanks to God and the incredible medical team and army of support that he sent us. 

[Photo Description: Dawn,  Mario,  Ollie and Abby pose in the steps of the church for a family photo on the day of Ollie's confirmation in May 2020.]

- Recently received his orange green belt in martial arts with Kids Kicking Cancer Canada Ottawa Chapter. This is one of the highest belts that they have given in the Canadian programs to-date.

- Gave a Para-Athlete testimonial as an Ambassador representing both Kids Kicking Cancer Canada and Canadian Blind Hockey and delivered a demonstration of Kids Kicking Cancer Power Breathing at the Ottawa Inclusion and Parasports Expo in June 2023.

- Graduated from his elementary school from grade 6 in June 2024 - a bittersweet day due to leaving the incredible community that supported him during his darkest days, and celebrating this milestone when we weren't sure he'd ever see it 5 years ago. (See photo above)

- Spoke (with mom) to 400 donors at a fundraising dinner in June 2024 for the Ottawa Sports and Entertainment Group (OSEG) Foundation on behalf of his Ottawa 67s Blind Hockey Team that they sponsor. 

- With his family was part of a video shoot in June 2024 for a special project with Childhood Cancer Canada launching in September.  Here's a behind the scenes sneak peek.

Watch for details soon!

[Photo Description: Ollie poses in front of the Sick Kids Precision Health Care Crystal Ball in September 2023 on University Ave. in Toronto.  The crystal ball was inspired by #TeamAddy. It was actually Precision Health Care that identified Ollie's miracle drug through genetic sequencing.]

So Ollie has had another incredible year of wellness and has lived the big beautiful blind life that we promised our team we would ensure he'd have WHEN (not IF) they saved him. The only minor medical issues he's had this year were changes needed to his thyroid medication because of his growth spurts (he's now 5'3" and growing normally without intervention and wears a size 10.5 men's shoe already!), and we discovered that like his sister he now seems to have a sensitivity/allergy to chlorine (fascinating as he never did before and we've heard many stories of a recipient suddenly having the same allergies as their donor), which is easily managed with an antihistamine. He has his annual oncology checkup at CHEO in September and at this point there's no concerns. He'll have bone density scans and bloodwork next week for endocrinology who continues to follow him every 6 months.  

His attitude is always so positive and he never lets his fear hold him back from trying new and exciting things.  Last year at SIOP a woman attending asked me if he had a hard time staying active with his blindness and I literally laughed out loud, proceeded to apologize, and explain that there is little that he doesn't do.  In the past week alone he's done martial arts,  therapeutic horseback riding, and learned to play Blind Golf thanks to the amazing resources in our community. 

Last year he got a character award at school for his grit.  I think that really is the best way to describe him.  He's literally influencing and changing the world for the better with his advocacy already and he's only 12. We couldn't be prouder or more grateful. 

This also serves as my annual reminder to CHEO and Sick Kids Hospital to continue to work tirelessly to find new ways to treat rare cancers,  and never to lose hope or see these incredible kids as just statistics. Statistically he shouldn't be here today with all that's happened to him.  But he always beats the odds and is atypical in the best ways.  I am so grateful every moment that I listened to my gut and insisted we try the next option to save him.  And that our medical team listened to me and found the next thing to try. 

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

As for the rest of our family,   we're all good.  Together despite all odds and mostly happy.  The past year has seen greater stability for all of us,  especially Abby. She is now 16, no longer anxious about friends knowing our family's story, and she's impressing us with how responsible she is this summer as a director at a local summer day camp. I feel like we'll blink and she'll be off to her next chapter in post secondary school and am basking in these last precious years of us all being together, because we know too well what it's like to be apart. Because she's working every day with kids, and given her personal experience with childhood trauma she's thinking about a career in psychosocial support for children who have been through trauma. I cannot imagine a better possible path for her to share all that she's learned the past 5 years.  No matter what she chooses to do,  I know that all of this will translate into her changing many lives in incredible ways,  too.  She's certainly changed all of ours with her selfless gift.

Mario is stoic as always.  Happy to spend time with all of us,  tinkering with his computers,  building Lego pretending it's all for Ollie and not really a childhood dream come true for him,  and being constantly dragged out of his comfort zone by all of us who love him. 

I continue my many advocacy activities - some with Ollie as noted above and some on my own (e.g. as Co-Lead for ACCESS' Education and Training theme), but all with the desire to give back and to make the world a better place for my children and other families who must endure what we did. Many ask me how we do so much advocacy on top of our everyday life.  The truth is that it's a true passion and has been a need the past 4 years to help us process and make some kind of sense out of something that seemed so senseless. It's been a gift that we've given both ourselves and the childhood cancer and vision loss worlds and a way to pay what we were given forward. As always,  it always feels so great to give, so we'll keep doing it as long as we can. 

Transplant Anniversary Highs and Lows

Photo description: Abby and Ollie stand under a marquee sign pointing up at the Gladstone Theatre that reads, "Happy 1st Birthday Post Stem Cell Transplant Ollie! Happy Hero Day Abby!"

On July 20, 2021, we celebrated Ollie's re-birthday/ one year anniversary of stem cell transplant and Abby's Hero Day (part 2 as we celebrated the one year anniversary of her actual stem cell donation back in March as part 1 given the relapse that Ollie had in between her donation and actually getting the transplant in 2020). 

It was a long anticipated day by Ollie and I and one that Mario and Abby preferred to mark more quietly. It seems as we go forward, Mario and Abby want to get back to "normal" (whatever that is - especially in the era of COVID-19), while Ollie and I are so irrevocably altered by it all that we can no longer just go back to who we were before. Perhaps this is because it's Ollie and I who were the every day participants in cancer treatment and stem cell transplant and neither of us got to live in our regular daily life over the past two years. Whereas Mario and Abby still went to work and school (albeit online since March 2020) and carried on with their usual day to day activities most days. Obviously both have been affected by everything, but given Abby is very much like her daddy in some ways, both appear to be stoic, yet have big emotions brewing just beneath the surface.

Abby did let me rent the marquee at the Gladstone Theatre (a great way to mark the special  occasion and to help out a local theatre company that has struggled like most during COVID) and agreed to pose for a photo with Ollie to help us promote our blood donation clinic that week, but felt that was enough for her.

 Photo description: A masked Ollie pushes the cart at Toys R Us with new Beyblade sets. 

Earlier that week Ollie had his last monthly check up and bloodwork at the CHEO Medical Day Unit (MDU) post transplant clinic. The doctor confirmed that all is well, he could stop taking the anti-viral he's been on for a year and is cleared to go back to school if COVID numbers stay low. He still cannot have the vaccines for chicken pox or measles, mumps and rubella (MMR) because they are live vaccines and he cannot have live vaccines while he remains on the Lorlatinib ALK-Inhibitor drug. So he has a medical exemption for those until he finishes his drug and if he should be exposed to any of these, there is a treatment plan if we act fast enough. Honestly it's all stressful, but many cancer kids faced same pre-COVID. And he desperately wants to go back to school and be normal. 

I asked about the protocol for fever going forward and we're now done having to immediately go to hospital for fever! So normal parenting of a kid with run of the mill day to day  illness now. It's mind blowing that one day we need to go to ER for any fever or sign of even a cold and and the next we don't. Of course there's also COVID to worry about and there is heightened risk for stem cell transplant recipients, so I was clearly still uncertain. Dr. Abbott reminded me that the team is still there for us and if we have any concerns we can call or email anytime. From this point forward he'll have checkups and bloodwork every 3 months, but does have certain other appointments in between. 

As a celebration Ollie asked me if we could do something like go to Toys R Us. I think he meant for curbside pickup, but given it was a Monday afternoon and not likely to be busy, I took him inside to pick his own special prizes for this milestone. This was his first time in a retail store in 20 months and he was almost vibrating with the thrill of it. Funny because pre-cancer he hated shopping with me. He touched nothing before I wiped it down and we stayed far away from the free other shoppers just in case, but it was enough normal for him.

Photo description: Dawn sits in a lounge chair connected to a machine while she donates blood at Canadian Blood Services on July 20, 2020 in honour of Ollie one year anniversary of his stem cell transplant and Abby's Hero Day.

Ollie didn't want to do anything different during the day, but had hoped to have some family friends over for cake on the deck. Unfortunately rainy weather put a damper on those plans, so we celebrated with just us four the night of the anniversary with Ollie's Pizzas from Gabriel Pizza and cupcakes and later in the week had cake with some friends, too. Naturally he got the latest Beyblades Stadium set as a re-birthday present! 

The actual day itself was quite emotional for me. It's taken me these last few weeks to unpack all that I have been feeling recently, hence the delay in writing this piece which I started, but needed to leave because I didn't know what to write to explain it. The fear and the relief that I felt on that day last year was not altogether different than what I felt on the same day this year. More relief and less fear this year, but always the underlying worry of what might be next for our incredible boy to face. 

I did a pre-recorded interview with Alan Neal from CBC Radio's All in a Day and Jan Grant from Canadian Blood Services (who has been amazingly supportive of our donor clinic and with whom I have a lot in common). Even doing the interview was more emotional for me than usual. As it happens we'd booked the donor clinic months ago, but suddenly the need for blood and blood products has risen dramatically as non-emergency surgeries and such have been re-started post lockdowns. So it was timely to be doing this and I found myself remembering being in the phone with the transplant doctors in March 2020 as COVID began and them telling me they weren't sure that there would even be enough blood available if Ollie needed it. To which I replied that he was the same blood type as I was and they could just hook me up and give every drop of my blood to my son to save him. The things you remember sometimes are unbelievable.

I had booked to donate blood that day at 5 pm with a friend, which is why I had to pre-record the interview. The interview aired as I was driving to make my donation and so many people in the clinic told me they heard it on the way over, too and it made them feel great to be donating at that time for people like Ollie. As it turned out a handful of my friends who had joined our team were there at the same time donating. I was super touched by their generosity and so thrilled to see Marie- France, Connie, Jenn and Jamie there! 

Photo description: Ollie wears a Canadian Blood Services hat and sunglasses while holding a Canadian Blood Services/Hockey Gives Blood mini hockey stick and puck on his one year anniversary of his stem cell transplant.

The staff at Canadian Blood Services were wonderful and sent me home with a big bag of treats and Canadian Blood Services merchandise for Ollie and Abby.

Since then I've had messages from a bunch of folks saying they donated in Ollie and Abby's honour recently and a few of them were even first time donors! My friend Jenn made her first allowable donation 5 years post breast cancer for Ollie! These were all high points of the emotional roller coaster over the past few weeks. I have the best people in my life!

Photo description: Ollie eats a piece of his #OlliesPizza from Gabriel Pizza to celebrate his transplant anniversary.

My emotions were also yo-yo-ing a lot over the past few weeks as I attended the online funeral of an old friend's husband two days before our rampant anniversary. My dear friend had been one of the first to reach out to me when we shared the news that Ollie had been diagnosed. I've known her since high school and she, her husband and myself were all in Ottawa for university. Her husband was battling cancer and had been for a few years by the time Ollie started his journey. She had a lot of advice to survive it all and throughout the past two years we've been in touch to update each other on significant developments. She'd told me at the beginning of the month that he was palliative. They have two children close in age to Abby. That triggered my sorrow. 

It's not that I'm close to her husband - I actually haven't seen him since university. It's how cancer robs a family. How every member suffers and is deprived of their joy for so long. How those kids had to watch their dad deteriorate and lose him. How my dear friend lost her partner (first emotionally/mentally due to the stress of it all and then physically, too) and spent almost 5 years of her life trying to save her family.

Photo description: Ollie smiles and gives a thumbs up white sitting at the table. A vanilla cupcake with sprinkles and a lit candle sits in front of him to celebrate his transplant anniversary.

Then the week after Ollie's anniversary, I heard from a friend who used to take care of my grandma when she lived at a retirement home. She told me she was looking at photos of that time and found some of Grandma that she thought I'd like. Through the course of our chat, it came out that she was going through the old photos for the mother of her former colleague and our mutual friend who had passed away suddenly of cancer in February. 

This woman was among the kindest people I knew. We became good friends over the years since she took care of my Grandma. She was at my Grandma's funeral and hugged me so tight and told me so many beautiful stories about her and how much she loved her. When she found out that Ollie was sick she sent me beautiful messages of encouragement and told me she knew my Grandma was in heaven lobbying God to let me keep my boy and how proud she'd be of me for the mother I was through such difficulty. She sent a superhero package with gifts to my kids last year just before transplant. 

I hadn't heard from her since late fall, but hadn't thought anything about it because many people who had been following us online grew quieter as things became more stable for us over the past year. I was honestly gutted to hear that she'd been diagnosed on Christmas Eve with ovarian cancer and passed away 7 weeks later. Few people knew she was ill. When I heard the news all these months later I was devastated. I was sorrowful and angry while begging God to help me to understand why innocent and kind people must suffer this way. Why do families have to go through this?!

Photo description: Ollie sits at the table with Mario after blowing out candles on his cake to celebrate his one year anniversary of transplant.

I'm doing better now, but I wasn't alright for a couple of weeks. My therapist says that anger is a normal part of the healing process after the trauma of cancer and my usual positivity and proactive nature will keep coming back, but it's important to feel these big feelings. 

Anger is my least favourite emotion and makes me feel out of control. I hate that feeling and yet a good part of the last two years I have felt that way...tightly wound with my sanity ready to snap at any point without warning. I've talked a lot recently to other cancer moms and know this is all "normal" for us, but still hard for each and every one of us nearly every day. 

Photo description: Ollie sits at the table in front of a Braille version of the game Scrabble and feels a Braille Scrabble tile for the first time.

There have been good days and high points interspersed among my bad days. The interview I did for Healthing.ca finally got posted. This was timely as it promotes donation of all blood products and these are desperately needed right now as surgeries and procedures resume after lockdowns.

We also saw the endocrinologist and Ollie's bone density and hypothyroidism issues are improving (slowly). We have scans again in about 6 months. In the meantime he stays on the hypothyroidism med, doesn't need the osteoporosis injections and cannot use trampolines or go horseback riding.

Photo description: Dawn, Ollie and Mario sit in a darkened movie theatre wearing masks while Ollie holds a huge bag of popcorn.

Another highlight was taking Ollie to the movies. Ollie was having cabin fever and begged me to see if we could safely go to the movies. We haven't been in two years since just before he got sick. 

I checked out COVID protocols and was happy to see I could book seats and everything around them would be blocked off automatically. Also figured Sunday night for a kids movie (the new Boss Baby sequel movie) wasn't likely to be a big draw. 

I discovered that most new movies now have audio description (marked as DS or Descriptive Service in movie ads) thanks to a lawsuit in the US where blind people sued the studios forcing them all to start providing audio description that narrates the details and context a blind person needs to understand what's happening on screen. Not only do studios have to provide audio description tracks, but theatres over the past six years have been equipped to have blind patrons use a special headphone and transmitter to provide the audio description in every theatre for free.

Photo description: Dawn holds a small black transmitter and headphones in her hand that read, "Fidelio". This enables bind and low vision people to use the descriptive audio service in movie theatres.

We went to the 7 pm movie with Ollie. There were three families sitting rows apart in the entire theatre. We bought a gigantic popcorn (we did once order movie popcorn to our condo in Toronto as a treat during transplant there!). We kicked back in the recliner seats. The movie started. The boys were enraptured. 

I sat in the dark and silently cried for the first 5 minutes at the blissful normalcy (despite masks) of it and with the joy of knowing that there is a technology that will allow my blind son some enjoyment of a normal activity. 

My heart was full and I enjoyed that silly overpriced movie more than any other I've ever watched. Grateful. Thank you science and innovation.

Photo description: Ollie stands in the grass at the dog park while commanding Buddy Dogs Hope (foreground) and June (background).

One afternoon we had a great meet-up with fellow CNIB Buddy Dog duo Connor and June at the Country Canines Playpark.The boys enjoyed the hour in a private dog run to keep them safe from COVID and to enable their dogs to run freely and have fun safely. I am always impressed by the CNIB Buddy Dog program and the fact that although these dogs didn't make it into the guide dog program, they are so well-behaved and responsive to commands even given by kids!

Photo description: Abby sits on the sofa with legs folded wearing a backwards ball cap and sitting beside Chewbacca the cat and CNIB Buddy Dog Hope.

Ollie was in his school's playground about a week ago getting re-familiarized with everything now that he's blind and hasn't been there in almost two years due to cancer, stem cell transplant and COVID-19. 

He walked every inch of the yard with his white cane to remember every tree, bench, basketball poll, soccer goalpost, door to the school and playground. At times it was frustrating for him to be back in a place he once felt so comfortable in and now needs to re-learn. 

Lots of patience from his vision loss consultant and many mama hugs later he got it done and even took a swing on the monkey bars. He was delighted to see he'd grown so much in two years that he could even reach up and grab them from ground level!

Photo description: A masked Ollie stands on a raised platform reaching for the monkey bars in front of him in his school's playground.

So ultimately despite the sadness and anger, most of our days were filled with happiness and excitement. My cup really is always at least half full.

Precious Time-Wasting Wisely

Ollie has been begging to go on vacation pretty much since he got sick two years ago. In fact our last official vacation was this week two years ago at Mont Tremblant. So it seemed time to live a bit and enjoy the life we fought so hard to have these past two years.

Photo description: Mario, Ollie (who is wearing a dive mask), Abby (wearing goggles on her head and Dawn sit at a patio table having lunch outside of an outdoor pool.

On the same trip to Mont Tremblant two years ago we were blissfully unaware of the cancer that was about to turn our entire life upside down. 

Photo description: Dawn, Mario, Ollie and Abby take a selfie at the Mont Tremblant Mini Golf Gazebo in July 2019 just before Ollie's lymphoma bump appeared on his neck.

In the summer of 2019 we had arranged to be in Mont Tremblant at the same time as dear friends Maria, Sofia and Micheline. We had a blast running around the village with them for a few days playing laser tag, going down the luge ride, paddleboating and so much more. 

Photo description: Dawn, Sofia, Micheline, Maria and Abby in vests and holding laser guns at Mission Liberte Laser Tag in Mont Tremblant on July 2019.

I feel like this might have been the foreshadowing of how close we'd all become in the following months when we learned that Ollie was sick. Maria and Mich were among our first visitors in hospital and were a constant support over the past two years. 

In addition to everything else that they did, they had a particularly important role in bolstering my faith in God during this journey and reminding me that He was always with me and sending me incredible angels like them and so many others to help us. Sofia has also been a dear friend to Abby and Ollie throughout this journey.

Photo description: Ollie lies covered up in blankets on a radiation table at Princess Margaret Hospital readying for total body radiation before stem cell transplant with the radiation machine above him and green lasers focused on his body.

Last year at this time we had just arrived back in Toronto after getting Ollie back into remission. We were  preparing for transplant and Ollie was undergoing total body radiation at Princess Margaret Hospital/Sick Kids this same week before being admitted for chemo and then transplant. Incredible where we are versus where we've come from these past two years.

Getting back to this year, naturally we checked all COVID statistics and protocols before deciding to go to Mont Tremblant this week.  My friend Leila has been living with her husband and kids at their cottage there all winter to keep them safe from COVID and assured me that the area was still very quiet and there are zero active cases in this region and only 75 active cases in all of Quebec! Given this and the fact that the #TwoDoseSummer for Ontario COVID vaccines seems to be working (Abby got her second shot last week), we indulged Ollie and booked a week away. It's also an early celebration of his transplant anniversary coming next week. 

Photo description: Abby after getting her second COVID-19 vaccine at the Queensway Carleton Hospital Vaccine Clinic in June 2021.

Packing and getting ready for the vacation was somewhat reminiscent of our last trip, which was to Toronto for transplant. This made me feel anxious. Like we've been here before, but the uncertainty of what we'd be facing as far as risks and keeping Ollie well were enormous again, even though they're not in comparison. That's the crummy part about PTSD...any little trigger can make you feel the full weight of your past trauma and anxiety like it is happening again, even when it isn't. But I'm learning to handle it and do hard things anyways. Deep breaths, Dawn. 

Ollie's well. The oncologist cleared him to go on this trip and even to go back to school if COVID numbers remain low in the fall, so we're all going to be okay and the risk is low and worth taking for mental health in other ways. Thank goodness I saw my therapist at the beginning of last week! She helped to affirm all of this and to remind me that it's still okay that I feel how I feel and normal given our circumstances.

Photo description: Mario and Ollie play a magnetic go fish game while on vacation in Mont Tremblant on July 2021.

We arrived last Saturday evening after Ollie and Mario slept blissfully the entire way and Abby and I sang girl songs of empowerment from the playlist that we made before our big trip to Toronto in March to get her assessment for transplant done at Sick Kids. Sometimes I listen to songs on our playlists made to get through hard things and I feel euphoric, other times nostalgic and sometimes just weepy and overwhelmed with what has happened. Some may think or  have asked, "Why would she WANT to listen to/read/talk about anything from those difficult times?!" Honestly it's my way of processing. It seems to be Ollie's, too as he repeatedly asks to great his "Bye Bye Lymphoma" playlist. I sometimes still tear up at certain songs remembering hard moments when those songs were playing, but I have always been affected by music that way, too.

I have experience in my family of people having gone through trauma and pushing it away into the deep recesses of their minds and hearts. They never talk about it (others in the know whisper about those times, which is how I am aware of them) and pretend that it never happened. But it's clear that it affects them, their judgement and relationships every day of their lives. Ignoring it doesn't make the trauma any less stressful or crippling. In fact it can make other aspects of your life worse as you repress the trauma and anxiety. Often it's caused other personal issues like addictions, casting the entire family into a cycle that is very hard to break. After everything else cancer has taken from us these past two years I cannot let it permanently take my mental and emotional health nor my children's. So I'll keep taking about it and remembering (maybe a little less frequently publicly going forward if stability continues) to try to recover from it all and leave space in my mental health for wellness.

 Photo description: Mario, Ollie and Abby play in the pool in Mont Tremblant while Dawn takes a selfie from poolside in July 2021. 

The week away was lovely. There were far fewer people there than we imagined, COVID protocols were effective and followed and we generally felt safe while out for the first time in what seems like forever (remember that Ollie was sick 6 months before COVID hit). We spent most of the week walking, swimming and just resting. I even went out to buy groceries in person...first time I've done that in about 5 months as we still get everything delivered.

Photo description: Ollie and his friend James play air hockey in Mont Tremblant.

As a bonus, on the first day, we bumped into dear friend of Ollie's James from school and his family where we were staying! It was lovely to see them all and we got to have a couple of "playdates" with him before they left after their long weekend away. Since all activities including the Arcade had to be booked, were limited to few people and were cleaned in between, it was easy to limit our potential exposure to COVID.

Photo description: Ollie, Mario and Abby swim in the pool while Dawn takes a selfie of them all from the deck.

You had to book a one hour time slot at the pool and several days we were the only our almost the only ones there! Ollie was in his glory and we were able to finally give him something he's been begging to do for 20 months - swim in a public pool with no PICC (a central line he had in during treatment for blood draws and IV meds as needed)! We were all able to really get in and enjoy it because there was such low risk and even the few that were in the pool with us certain days were very respectful and kept their distance. 

We did do one interview with the incredibly kind Katherine Dines from Ottawa's Move 100 to talk about the upcoming blood donor clinic (see info later in this blog) in honour of Ollie's one year anniversary of his stem cell transplant and the #OlliesPizza that continues to be available from Gabriel Pizza in support of childhood cancer families through Candlelighters Ottawa. And our update piece with Canadian Blood Services for the transplant-iversary came out last week, too. We continue to be humbled by the interest in our story and the opportunities to promote awareness of childhood cancer and blood products donation.

Back to the vacation...at Ollie's request, he and I went up to the village one day to try to do something fun. Mario and Abby preferred to relax in our vacation home with Hope. So off we went to the village, taking the open gondola to the top to make it easier for Ollie not to have to walk all that way. Getting Ollie in the gondola while blind was a new experience, but he did it like a champ and I was grateful to the operators who had given me the signal that they had seen his white cane and were watching closely and prepared to press the stop button if we needed it. We didn't and Ollie and I were pretty proud of ourselves. I am constantly grateful for how his white cane creates awareness and accommodation when he needs it.

Photo description: Ollie and Dawn wear masks on the open gondola with wind in their hair while riding to the top of the Mont Tremblant village.

Ollie is like me and LOVES amusement rides and new adventures. So he was so joyful during that ride up. I described everything we were passing and while I still wished he could see it himself, I was grateful that he'd been before and had pictures in his head already about how beautiful it all is. 

When we got to the top, he wanted to try the luge. I had already called ahead to inform them that I was bringing my blind son and to see if we could ride together. They said we should check directly with the operator. Sadly, the staff there said we were too big to fit together. Grateful that I had prepared Ollie for this possibility, I assured him we'd find something else fun to do. 

Photo description: A Mont Tremblant staff member helps Ollie into a harness while sitting in a trampoline at the Eurobungy ride.

So off we went to the Eurobungy. Thankfully there were no lineups anywhere! A sure sign that things are not yet normal up there. 

I was nervous about him doing it with his blindness. He can get dizzy and nauseous almost like having vertigo at times as is normal for blind people who don't have the horizon  focus on to help with their centre of balance. I had thought ahead and brought his anti-nausea meds just in case (he hadn't taken any in months he's been so well). Also, I was a bit nervous about his back and hip. His bone density issues continue and while he generally feels little or no pain, I wasn't sure if this would hurt him. He just had bone density scans last week and I knew his hip was a bit better and his back a tiny bit worse. He sees the endocrinologist and the bone specialist on July 22, so hopefully we'll know more about next steps then. In the meantime I reminded myself that the risk is still low and that we got him well to let him live and I need to put aside my fears and desire to bubble wrap him now and just let him be a normal kid.

The young man who helped him into his harness had seen him come in with his white cane and understood immediately that he was blind and would need very clear verbal instructions and reassurance. He was so kind and gentle with Ollie, taking special care to keep him safe and to make it fun for him. I could have hugged him.  His name was Zach. Whoever his parents are should be so proud of what a kind and respectful man they have raised.

Ollie had a blast! It took him a few bounces to get the feel for it on his feet to know when to brace for them to hit the trampoline, but as in all things our brave warrior figured it out quickly and was soon laughing out loud in delight. I was in tears and was glad the sun was in my eyes so I could blame that instead of my emotions for once. Zach and I asked several times if he felt okay and he assured us he felt great. The timer went off and Zach (knowing how happy Ollie was and that there was no lineup of kids waiting for their turn behind him) says he didn't pay attention to timers and let Ollie bounce a bit longer. When it was done he gently helped Ollie out of his harness, told him how great he'd been at it and wished us a great day. He'd already made it perfect for us. 

Photo description: Ollie is strapped in a harness and bouncing in the air off of a trampoline while holding on to the bungy cords on each of his sides. The sky is very blue with fluffy white clouds and there is no line up for the ride.

Ollie was so thrilled with the whole experience and proud of himself. Once again he'd done something scary and difficult in his constant darkness and conquered it in every way. He felt like a "normal" kid. After that I offered him several other options, but he told me that had been enough excitement and he was ready to head back to our condo. 

Photo description: Ollie makes a move on his Tactile Chess Set on the table in front of him while playing with Mario on the sofa.

Photo description: CNIB Buddy Dog Hope looks at the beautiful lake and mountains behind her while Dawn crouches beside her and takes a selfie while on a walk in Mont Tremblant.

On the last day we went to our friend Leila's cottage (while she was in Ottawa with her kids swimming in our backyard to beat the heat!) to use her lake and boats. 

Photo description: Abby and Ollie sit in a yellow paddle boat on the water while Mario and Dawn prepare to push the boat out and get on. All are wearing life jackets.

It was a beautiful day and the kids were excited to get on the water. We paddled around for a while. Then Abby and Mario swam a bit while Ollie fished and I just enjoyed the serenity. Hope had already had a swim and settled down in the boat next to Ollie while he fished. He caught nothing, but was happy just to do it.

 Photo description: Mario and Abby stand in the water holding the paddle boat while Hope lies in the boat beside Ollie as he fishes.

Finally we enjoyed a picnic on Leila's back deck, at her suggestion used her facilities and tried out the electronic drums and headed back to our condo after a fun day. Many thanks to Leila and Adam for allowing us to use their home away from home.

 Photo description: Ollie sits at an electronic drum kit with drumsticks in his hands while wearing his hat backyards and sunglasses.

All in all, a great if quiet vacation (at least compared to our typical vacations of past) and much needed time to rest and start to slowly rejoin the world. We remain hopeful yet cautious as we watch and see what the fall will bring as far as COVID is concerned.

Before I wrap this up, just a reminder that we are doing a blood donor drive in Ollie and Abby's honour this week to celebrate Ollie one year anniversary of his stem cell transplant. 

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. If you can't make it between July 19th to 24th, it still counts, so make it in a few weeks or even months and still be counted!

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.

 Photo description: A Canadian Blood Services (CBS) poster reading "Honour Abby's Be A Hero Day by donating blood" with a photo of a masked Abby standing in front of the CBS office sign near Sick Kids Hospital in Toronto days after Abby made her stem cell donation for Ollie in March 2020.

You will hear from me again soon as I planned a special post this week for the one year anniversary. Until then, enjoy every moment of your health, remember to continue to be safe and observe COVID precautions for kids who can't get the vaccine yet and immuno-compromised people like our Ollie and practice gratitude. We all have a lot to be thankful for, even when it may not seem like it.

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.