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. 

Vision for the Holidays and 2022

[Photo description: Ollie is dressed in a hospital gown and snuggled by Dawn as both wear masks and sit in the waiting room at CHEO's Surgical Day Unit.]

Ollie had eye surgery on his right eye at CHEO on Wednesday, December 15th. He was a bit nervous the night before and the day of, but overall in good spirits and a total trooper as we got ready and set out for CHEO that morning. 

As usual he wasn't thrilled about the waiting, but at least he's no longer on steroids like he was during cancer treatment. Then he used to rage if he waited too long for anything, especially when he was NPO (Latin for not by mouth or no eating before surgery). 

[Photo description: Ollie waits in the waiting room of the Surgical Day Unit while playing with fidget toys to pass the time.]

He was getting a bit grumpy by noon when he was in the Surgical Day Unit ready to go and just waiting for them to take him in. After getting his vitals checked and having drops put in his eyes, the nurse gave him a new owl stuffie as a reward for his patience and cooperation. 

Finally, about 20 minutes later than planned, they came to get us. On our way into the prep/recovery area, Ollie had a little bout of nerves. It was weird this time because he's never been well/strong enough to walk in instead of being wheeled in on a gurney. He got angry at me when I made him go to the bathroom (I had to remind him that if he didn't he might have an accident when he was sedated), then burst into tears. Naturally this was just as the doctors had arrived and wanted to talk to me about the plan. 

[Photo description: Ollie wears a hospital gown, hospital pants and mask while sitting in the waiting room with his white cane and new owl stuffie.]

Thankfully they were preoccupied with finding the anesthesiologist who had been delayed in her earlier surgery, so they gave us a few moments to get ourselves together and ready. As he hugged me and calmed down, Ollie was very apologetic for his outburst. I reassured him that he didn't have to apologize for feeling overwhelmed, everything was going to be okay, and surgery was going to go well. After some big hugs, Ollie was ready to go. 

To my great surprise, despite COVID-19 risks they allowed me to walk him right into the operating room. This required me to be in full PPE, but made both of us feel more comfortable. It was an OR way in the back of CHEO and the largest I had ever been in with Ollie. The anesthesiologist knew Ollie from previous surgeries and procedures and was so kind as always. Ollie being the pro he is had asked to be sedated with the gas (what a bizarre world we've lived in that my 9 year old knows the menu of sedation options). The anesthesiologist was happy to give him what he asked for and even made the gas smell like strawberries, so he was out before he counted to 20. 

They invited me to kiss his head through my mask and promised they'd take great care of him. I thanked them profusely and walked out feeling confident that they would keep him safe. Honestly this was easiest of all of the many times I've had to leave him in the hands of the amazing team at CHEO because I knew it was going to work out.

[Photo description: Dawn and Ollie take a selfie in recovery after Ollie's surgery. Ollie is wearing an eye patch and lying in a hospital bed looking tired.]

Dr. Michael Dollin (retina specialist at the Eye Institute at The Ottawa Hospital) and Dr. Jeff Mah performed his victrectomy and lasering. Surgery took about two hours, and they came down to see me in the waiting room afterwards, smiling behind their masks (you can tell). They were happy to report that surgery went as well as they could have hoped and he was doing great in recovery. They confirmed that it hadn't been a retina detachment, but indeed a vitreous detachment (as suggested in the MRI report, but could have gone either way). They were able to repair the main blood vessel attached to his retina to restore proper blood flow, clear out that pool of blood that had been obstructing the bit of peripheral vision he had before, and had put a half gas bubble and a couple of stitches in his eye to hold everything in place. Both will dissolve as he heals.

[Photo description: Ollie feeds himself chicken noodle soup with rice at home.]

Unfortunately, they reported that he did have the beginnings of cataracts in his lens (very common in cancer patients after chemo), so they decided to remove it because it was not usable for him that way anyways and healthier to remove it.  The lens is used for focusing (just like the lens of a camera) and because his optic nerves are already severely damaged from the lymphoma, even with a healthy lens he wouldn't be able to see details right now. Our goal is to keep his eyes healthy so that as science evolves and it is possible to fix his optic nerves, he may have the possibility of more sight one day if he wants it. Dr. Dollin explained that it is already possible to have an intraocular lens (IOL) implanted and as science advances and his optic nerves can be fixed, they could add an IOL in future to enable him to see again. Overall I was so grateful that everything went well and glad I'd listened to my mother's intuition again and pushed for the surgery because it was successful.

[Photo description: Ollie sits on the sofa with a table and a Beyblade stadium in front of him as he prepares to rip his Keyboard and Mario's hands can be seen reading to rip.]

Ollie was groggy in recovery, but felt okay otherwise. He was thirsty and eager to leave and go to McDonald's since he hadn't eaten all day. Given he was still tired, he rode out in a wheelchair and Mario picked us up. By the time we got home and he gobbled down McDonald's, he was almost back to normal. He is absolutely incredible.

When he discovered he was well enough to Beyblade, all was right in his world again! 😜  He honestly he's had no pain, just some minor itchiness as the sedation came out. He has two eye drops to take four times daily for the next few weeks until the eye is healed.

[Photo description: Ollie sits on the sofa wearing a t-shirt shirt and pajama pants with Santa hats beside Hope.]

He slept well and got up early. About mid-morning we went to The Eye Institute for a post-operative check-up. Everything looked great, there was minimal bleeding from the surgery and Ollie felt good. He was able to see light already and the doctor expects it will get even better as it heals. He'll continue to be legally blind, but it looks likely that he'll recover some peripheral vision to see shapes and shadows. We were told to just have him wear the eye shield to sleep and by day only wear the patch if he felt he needed to. 

[Photo description: Dr. Mah examines Ollie's eye in a darkened room at The Eye Institute the day after surgery.]

The hardest part about his recovery was just keeping him calm and inactive. Thankfully he didn't need to have a full gas or oil bubble in his eye and have to stay face down for days, so that was a relief. We'd read about how this surgery could require complete bed rest and doing nothing for up to 4 weeks! Naturally Ollie  continued to be full of energy after surgery, so there was a lot of me reminding him not to bend, bounce, run, yell, or get angry. We needed to keep his pressure down to minimize any bleeding. The week went fairly well.

[Photo description: Ollie clowns around while leaving The Eye Institute, holding his cane like a sword and wearing a black eye patch like a pirate.]

Six days later we went back to The Eye Institute and Dr. Dollin said everything looked great, his pressure was normal and declared him already able to get back to "normal daily activities". I explained to Ollie that this still meant he needed to take it somewhat easy and there would be no skateboarding or sports yet. Dr. Dollin gave us instructions to taper his drops over the coming weeks and said he'd see us in 3-4 weeks when we could talk about a plan to do the second eye since the first went so well! 

Victory! I feel vindicated after being the pushy mama for the past 9 months since I noticed Ollie struggling in the darkness and insisted we needed to fix this if we could. I am grateful as always to Ollie's brilliant, yet humble doctors who treat me like a partner in his care and listen, even when they may at first think I am the overreacting mama. 

[Photo description: Ollie and Mario stand in front of the Christmas tree wearing matching work overalls, t-shirt shirts and tuques. They are smiling while Mario has his arm around Ollie.]

With COVID numbers exploding everywhere (it's estimated that numbers are at least three times higher than reported since so many people are isolating and there aren't enough COVID test), we're still trying to keep Ollie from getting it, even if Omicron seems to be a milder form. The thing is he only had one vaccine so far and we don't know what his short- or long-term effects might be if he got it as a stem cell transplant recipient. Sadly we know many families now who have gotten it here and in Toronto and are facing Christmas in isolation. We feel for these families and hope they'll weather it easily and quickly. A Christmas in isolation certainly is not the worst that can happen to a family, as we know too well. This is our third in isolation and we'd do as many as needed to keep our family safe and well. 

[Photo description: The package received from Santa through Canada Post elves. The envelope is shown at the top, Abby's printed letter on Christmas paper is on the left and Ollie's Braille letter is on the right.]

We'll end on a happy note because despite everything, we are here, happy, healthy and grateful. 

Ollie asked me to write down his Christmas Letter to Santa as he dictated it months ago. In it he asked for not only a toy for himself, but also that Santa bring something special for his sister Abby who had given him stem cells so he could live (my eyes were leaking as I wrote it). Before sending it off via Canada Post, I added a note that mommy had written what he dictated because he went blind during cancer treatment, but was doing great thanks to his stem cell transplant.

This week a package arrived from Santa addressed to Ollie & Abby. There was a lovely letter for Abby (even though she never wrote him one) that noted that she was a true hero because of  her "overachieving stem cells". It also mentioned Ollie's CNIB Buddy Dog Hope! Clearly the Canada Post volunteer elves did their research and knew our story! 

In addition and inspiring my tears again was a letter in Braille for Ollie. He was so excited to receive it written in a way that he could read it! Many thanks to Canada Post and their amazing volunteer elves helping Santa to reach ALL kids! 

To close, please minimize or cancel your gatherings to reduce your risk of COVID. I know it's tempting to see everyone you planned to, but we'll all pay for it in early January when stats are even worse. Even if we don't end up in lockdown again, we'll likely end up home with online learning again if we can't control cases over the next 10 days. Trust me, when you're together with your immediate family or just a few trusted loved ones, the holidays can still be beautiful. Wishing you all safe and happy holidays.  Praying that 2022 is a better year for everyone!