To backtrack, Christmas was quiet but lovely. We hadn't expected to do much given Ollie was recovering from his eye surgery (vitrectomy and laser surgery), but have been isolating basically since December 23rd given how many of our friends were getting COVID without really understanding how they were getting it because they were doing the same things they'd been doing all fall. It became obvious to us that our risk was very high and we decided to mitigate that by going into hiding from COVID again.
Overall Ollie is doing well and his recovery from his eye surgery has been phenomenal. He had his one month post-op last week and the doctor was shocked at how well it all went and how quickly Ollie has healed. Another point scored for Abby's overachieving stem cells! He has been able to see more light and shadows lately. The other day he and I were playing with foam swords and when I was on his right he could easily find me even when I was being silent. He told me he could see me moving and my shadows in the light.
Now we're waiting on the hospitals resuming normal surgical procedures so we can schedule the other eye. We're told it will likely be late February or early March if they can get a surgical date. I remain hopeful that his left eye will also be a vitreous detachment like his right was as opposed to the retinal detachment that they worried it might be. If this is the case, it would be amazing if he could recover some ability to see light in his left eye, too. They fear his optic nerve may be too damaged, but they also felt the same about the right one. As always Ollie's incredible ability to get through whatever challenge is thrown at him has helped him through and will no doubt continue to.
Other than the few critical medical appointments that Ollie had to attend, we've basically gone nowhere and done nothing that could be a risk for Ollie. Ollie got his second COVID vaccine on January 14th (7 weeks after his first) and because he is still considered immuno-compromised after transplant (and will be for about 3 years after) he'll need a third 4-8 weeks after his second. Because COVID cases have been rampant since the holidays, we opted to keep the kids home until Ollie's second vaccine became effective. The kids were not thrilled about it, but agreed that it was the best thing to keep Ollie safe until he was more protected.
Ollie's committed teachers all made it easier for us to do this by working together to ensure that we'd be supported while he had to be home. Ollie's amazing vision itinerant teacher agreed to teach him online each morning, getting his Math and Language curriculum from his english teacher so that she could teach these herself as well as his Braille. His french teacher posted French and Science content online for us to work on at home. His physical education teacher offered to have us come for the outdoor classes, but we opted out of these until he was fully vaccinated. Overall he's been very pragmatic about all of it because he knew we were all sacrificing to keep him safe.
He's had a few online chats with friends over the past few weeks and continued to do Kids Kicking Cancer online. It has taken its toll on him though and he was astute enough to tell his psychologist this week that he felt that if he and Abby go back to school next week and we all get back to regular life everyone will argue less, be less stressed and be happier. The psychologist thought all of his observations and examples of anxiety for all of us were quite impressive for a nine year old.
Abby's doing okay. It's been a tough few weeks for her being home and away from friends. Over the holidays she saw a couple of friends outdoors masked, but after school started we knew this was not a great idea and increased our risk. She reluctantly agreed to stay home, but begged me to allow her to go back as soon as Ollie's vaccine was effective. In truth I'd feel better if they stayed home a few more weeks until we are certain this wave is on the way out, but I can see that their mental health is suffering. In our case I think it is less about the actual isolation which we have gotten pretty good at over the past 26 months since diagnosis and more about the PTSD feelings that start to get stirred up as this feels like the scary times when he was undergoing chemo and transplant and we had to stay away from people to keep him alive.
I've learned that I cannot control everything, but my risk management certification has helped me to identify what I can do to try to mitigate the risks. So I've focused the last few weeks on encouraging the school boards to allow teachers to disclose anything they know at the classroom level. The Ottawa Catholic School Board agreed last week to do this and to be honest I was less concerned about Ollie's school and community given how amazing they have been over the past two years of Ollie's illness and recovery. The Ottawa-Carleton District School Board was not so quick to agree to this. So I made a presentation at the online Board meeting (I come in at the 15:50 mark) last week thanks to a friend's suggestion. The next day I was quoted in this Ottawa Citizen's article and I was contacted by the Director of Education's office and the school's principal to discuss ways that we could get more information to help to keep Abby safer so she is less likely to bring COVID home to Ollie.
The thing is, even if he's fully vaccinated, because of the chemotherapy, radiation and transplant, his body and organs have already been battered and I am fearful that the strain of COVID (even a potentially "milder" variant) on his body could cause further issues such as multi-system inflammatory syndrome in children (MIS-C). We can't forget that due to his treatments he also has problems with his endocrine system that is causing hypothyroidism and osteoporosis in his back and hip and that he remains on a t-cell kinase inhibitor (TKI) drug that elevates his liver enzymes. While his kidneys and heart appear healthy in all recent tests, it is possible that COVID could change that given his medical history. And we all know about the ongoing reporting of "underlying health conditions" and "comorbidities" when it comes to COVID. It actually really makes me mad when people try to explain away COVID in vulnerable people by saying that they aren't sick or dying from COVID, but from these underlying health issues. The fact remains that at the moment my son is well despite all odds and if he were to get COVID and get sick again, it's because of COVID not because of the cancer he had. Without COVID those who are vulnerable can remain well. You can't excuse COVID for the damage it causes, even in those with previous or underlying health issues.
So we've worked out plans at both schools. Letters have been sent home to Abby's class and to Ollie's entire school to remind them that there is an immuno-compromised kid in the community whose safety depends on disclosure. I've also heard from several parents of Abby's new friends at her new middle school whom I didn't know before. They saw my plea to the Board and reached out to tell me that they will help to keep her safe and will let me know if they hear of anyone else in the class being sick, too. I am grateful for their kindness. I've had a lot of similar messages from the parents at Ollie's school, too. As always, we are so grateful for the village that helps us to raise our children.
If you have a child in school right now and they become ill with any serious illness, please let your child's school know so that they can keep kids like Ollie safe. We don't know who is sick (unless the parents disclose directly to us) and are absolutely praying that your kid recovers quickly and fully both for your sake and for ours. As the mother of a cancer and stem cell transplant survivor, I can absolutely tell you that I will never judge you for your child's exposure to illness and never want you to go through the agony of seeing your child suffer from a serious illness the way that we have.
In other news, right after Christmas CBC Radio's Ottawa Morning aired the story of Ollie getting back on his skateboard after going blind. He was really proud of this interview and what he's accomplished with his instructor Jordan at The Yard. CBC also tweeted a short video of him on his board. He is a complete marvel.
Ollie is also participating for his second year in the Snow Angels for CHEO fundraiser to raise money for the Oncology Ward (4 North) and the Medical Day Unit (MDU) at CHEO. The idea is that you do a snow angel in your bathing suit and get others to pledge/donate when you do. Snow Angels in your bathing suit are optional and last year Ollie was just out of transplant, so paranoid mom wouldn't allow him to do one that way with organizer Roland and fellow CHEO kid Jakob. I promised him if he was well enough this year he could. Ollie loves a challenge, especially a physical one that makes him feel really alive, so he begged me to let him do it this year. On the day we got 40+ centimetres of fresh snow and it was -4 versus the -20 it had been for days, I finally caved and let him do his snow angel in his bathing suit. There is nothing this kid wouldn't do to help others survive what he has. If you are able to donate we'd so appreciate it!
On Monday, January 31st the kids were excited and treat to go back despite mom's reservations and anxiety about it. Both got up and eagerly got ready. Just as Abby was eating breakfast we got a call from her principle saying that someone in her class had a positive COVID test on Sunday night. Abby was very upset, but grudgingly accepted her fate and grumpily stayed home. She'll be home the rest of the week and if there are no other cases in her classroom she can try again next Monday. She was naturally upset that Ollie could go, but as we explained to her he was actually less risk since he was going to be one on one with his Vision Itinerant teacher and Abby had been the one that got him all excited Abbott going back afar he was okay with being home, st we couldn't take that away from him, too. She said it was unfair, but did admit that she knew he'd been home for two solid years without daily interaction with friends already. We told them both that none of what we're been through the past 26 months is fair, but we still have to keep going and make the best of a bad situation.
We are grateful to Abby's classmate's family for disclosing and even more so to her classmate themself who actually sent a message to her entire class on Snapchat to let them all know she was positive. Abby read us the comments. Every one of them was kind, wishing that the classmate would quickly recover, not have serious illness and be back with them soon. Imagine if all of us did that for each other instead of stigmatizing others for having it? It's everywhere now and even people we know who have been so careful have it and are unsure how, so no point in blaming people for living and getting sick - we all used to, remember?! Also hope that this is a lesson to parents with older kids to encourage that their kids share that they are sick with classmates so they can keep reach other safe, too. We didn't used to hide that we had the flu or colds from each other, so why would we for COVID? Having just been through one of the most personal illnesses I can ever imagine having, I can assure you that being open and honest with your community about your family's illness will enable all of you to keep each other safer and back on the road to wellness.
I'm scared about the next transitions that COVID will bring, but we survived the almost unfathomable things that we did, so we'll weather whatever comes next. Sending you all best wishes for a healthy and happy 2022. It's got to be better than the last two for all of us!
