[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.
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.
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.
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.
[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)!
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!
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.
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!
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.
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.
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!
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!
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.
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.
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.
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.
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!
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.
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.
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