New Year, Slow Start

Happy New Year to all! It's been over a month since we last posted and we've had a slow start to the new year thanks to COVID. Given the scary increase in cases and the fact that Ollie could only get his second vaccine in mid-January and needed two weeks for it to become effective, we made the difficult decision to keep the kids home from school.

[Photo description: Ollie and Mario are outside in the snow in the backyard holding sparklers on New Year's Eve. Ollie wears an orange ski jacket and a smile while holding a lit sparkler in each hand while Mario clowns astound behind him holding one and wearing orange glow stick eyeglasses.]

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. 

[Photo description: Ollie sits on the sofa excitedly holding up a new Takara Tomy Beyblade on Christmas morning. Mario is seen to his right opening presents.]

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.

[Photo description: Ollie gets his second COVID-19 vaccine at CHEO while wearing his red "One Year In Remission" t-shirt and a KN95 mask and holding Llama Llama Blue Pajamas for courage.]

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. 

[Photo description: Ollie sits at the dining room table with his computer on the table in front of him while doing online learning. Hope lies on a dog bed at his feet on one side while Chewbacca lies on a chair on his other side.]

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.

[Photo description: Ollie stands on his exercise mat in the living room poised to do karate punches in front of a ring light and cell phone for his Kids Kicking Cancer online session.]

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. 

[Photo description: Abby and a friend have a masked visit outdoors under the outdoor heater with the fire table between them early in the new year.]

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.

[Photo description: Ollie and his CNIB Buddy Dog Hope pose while on a walk at the snowy Experimental Farm at sunset. Ollie wears an orange ski jacket and black snow pants and holds his white cane in one hand and Hope's leash in his other. Hope sits at his feet.]

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.

[Photo description: A masked Ollie sits on a bench made out of snowboards next to his masked skateboard instructor Jordan while being interviewed by Denise Fung of CBC Radio for the Ottawa Morning piece. Ollie wears his skateboarding shoes and pads and holds his white cane with a large red rolling ball tip while Jordan still wears his pads and helmet. Denise is kneeling nearby and holding a recording device and microphone.]

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! 

[Photo description: Ollie does a snow angel in his bathing suit in the backyard on fresh fluffy snow in balmy -4 weather for the Snow Angels for CHEO 2022 Campaign]

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.

[Photo description: Dawn and Ollie sit in the sofa while Hope has flopped down in between them and is lying on her back with her nose in the air and her feet up in a submissive pose.]

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!

Education vs. Ignorance

This week like so many others my children go back to in person school. Abby for the first time since March 2020 when the pandemic hit and she went into online learning and next month would mark two years away for Ollie as we basically pulled him out when his intensive testing to get to diagnosis began in October 2019. I'm trying to remember what it felt like to send them both off into the world with no significant fear. I had no idea how our entire life was going to change in mere weeks. The only indicator that anything was wrong was a small bump on his neck that we still thought was a little infection. Maybe that's why I'm so scared now - because I know how it can all change in a moment. 

Photo description: Then 7-year old Ollie and 11-year old Abby pose on their front porch for their last back to school photo in September 2019, before cancer diagnosis and COVID-19.

We've debated long and hard what to do about schooling this fall. On the one hand we know that the kids want to go back and need socialization and "normalcy" for their mental health. On the other hand Ollie is still technically immuno-compromised. Even though he's been strong enough to stop his anti-viral medication and have all of the non-live vaccines to-date, he remains at some level of risk for COVID-19, Measles, Mumps, Rubella and Chicken Pox. The oncologist felt that all but COVID were manageable/minimal risks given childhood vaccines are mandatory for kids to attend public school (unless they have a medical exemption like Ollie currently does for the MMR and Varicella vaccines) and we don't often see outbreaks. 

 Photo description: Ollie hugs his famous stuffy Llama Llama Blue Pajamas and holds Dawn's hand while a CHEO nurse on each of his sides gives him one of the 10 doses of childhood vaccines that he has received again post transplant since February 2021.

Three years ago there was a measles outbreak in the schools causing Ottawa Public Health to crack down and start requiring that parents report their children's vaccinations or be suspended from school. Last year when we got back from transplant there was a chicken pox outbreak at CHEO (nearly gave me a heart attack). Nevertheless the oncologist assured me that for anything other than COVID if Ollie is exposed and we get him to hospital quickly there are treatments we can give him to keep him safe. The same cannot be said about COVID-19. She said, send them back, but watch the numbers and if they rise or there's any at his school, pull them out.

I know this is also a happy moment for them - a milestone - but I've lost a lot of sleep, ran every scenario through my head dozens of times and cried so many tears of frustration and fear. Part of this is the fear of him coming into contact with one of these illnesses. The other part is the fear of returning to "regular" life and somehow the cancer comes back and we're back to battling. You see, it's easier to keep wearing the armour than to take it off, get used to living without it and possibly have to put the heaviness of it all back on again. I think this might be how medical workers battling COVID-19 are feeling right now, too during this fourth wave. 

Photo description: A cheerful Ollie gets ready to play Beyblades in his playspace after an orientation visit at his school last Friday with his English teacher, Vision Itinerant teacher and Educational Assistant. 

I've also been with him almost every single day (minus the 3 days I had to take Abby to Toronto for her stem cell donation medical assessment and Mario stayed in hospital in Ottawa with him) of the past two years. I've been his mother, his coach, his caregiver, his playmate. I am the keeper of all Oliver medical history (his doctors generally ask me to explain history or point them to the right time in his massive medical chart) and I am the coordinator of his whole life. Keeping him alive and my family intact has literally been my whole life these past two years. I am on the precipice of big changes in my life and my future as his begins again. Also a milestone and cause for joy, but PTSD remains and I now stress more about making plans for the future. Oh the irony of a former strategic planner being afraid to plan! This is all way harder than leaving Abby or Ollie for their first day of daycare or school!

 Photo description: Ollie drives a Little Tykes car while ECE Silvia talks to him on his first day of daycare in 2013. His sister had been with Silvia for the 4 years prior, so Ollie had known her since birth making his transition and mama's pretty easy.

I have zero qualms about leaving them at their schools with the amazing teams there. Ollie's (and Abby's former) school had no cases of COVID last year. A testament to the community and staff's efforts to keep our kids safe. Also, staff and families at his school have helped enormously to get Ollie well and support us these past two years. The principal and her staff are arguably the kindest and most committed team of educators around. We honestly have a dream team around Ollie this year including incredible English, French and Phys ED teachers, and an incrediblly patient and committed EA (who messaged me last year when Ollie went blind and told me she'd get started on learning Braille in hopes of helping him when he got back!) who we know thanks to our 9 years at St. George. Every one of them and so many others at the school sent food to our home to nurture our family, participated in prayer circles, loved and cared for Abby and followed us online when Ollie was sick.

 Photo description: A recent tweet from St. George School sharing a Kids Kicking Cancer fundraiser promotion with a photo of Abby and Ollie and calling them two of St. George's heroes.

We also have an amazing vision itinerant teacher (who was the first person to reach out to me about getting Ollie into the vision program in June 2020). Also on our vision itinerant team are excellent Orientation and Mobility and Daily Living Skills teachers who will each work with Ollie once a week to help him to continue to learn how to navigate his world blind. Finally, we are blessed to have an occupational therapist, a physiotherapist, a child psychologist and our dependable POGO Interlink Nurse Graham from CHEO also on the team. All of this is mainly because of the blind/low vision program, but also because of his cancer. We are so grateful for the supports available.

Honestly what more could I ask for?! And I asked for a lot and got it all and then some! So you can see he/we will be well supported and I know how invested they are in helping him thrive and stay safe this year. More tears from me, but these ones are of gratitude.

 Photo description: Abby and her dearest friends from St. George gather to catch up before returning to middle school while masked and sitting on top of the monkey bars at their former elementary school. 

On the Abby side her wonderful resource teacher at her new school who tried to help from afar last year had her in for a tour of the school last week, told her what class she was in and how things would work. We also got to see our dear friend Eleri who teaches there and assured me she was there for Abby, too if she needed anything. This set my tender heart more at ease. More amazing educators and nurturing women to help my kid. Thank God for the village. 

On a different but related more, education is so needed in this country right now to combat the ignorance of the anti-vaxxers and fear mongers. I have been reading about how anti-vaxxers and people who are anti-vaccine passport are protesting at hospitals all across Canada and blocking access for critically ill and cancer patients, families going to pay their last respects to a dying family member, women arriving in labour, paramedics bringing in accident victims, etc. It even made it into the New York Times. And the worst part is some of the protesters are medical staff!!! I'm upset. No. I'm appalled and angry.

 Photo description: A screenshot of an online article from News1130 City News in BC. The photo is of unmasked angry anti-vaccine and anti-vaccine passport protesters in front of a hospital/cancer centre. The headline reads "B.C. cancer patients forced to walk through mob of protestors to get to appo..."

I have had to bring my cancer kid into 4 different hospitals' emergency rooms, for clinic visits, for chemo admissions and radiation treatments over the past two years. Every single time it was hard. Gut wrenching often. On most days I was super anxious and had to put on my emotional armour just to walk through the door. If I had had to walk or drive through protestors who could further endanger my child's life, I may have killed someone. And I am not a violent person, but you have read about me going mama bear to save him. I'd do literally anything to protect my family and especially my son who has endured too much pain and sacrifice during his battle with cancer and recovery from stem cell transplant. 

This is not okay behaviour, Canada. Peaceful protest is one thing. Willfully blocking people battling death from their lifesaving treatments, shouting at them and spitting at them (especially during COVID, but really anytime since their infection fighting neutrophils are low during treatment) is NEVER okay! I am past the point of trying to give people like this any benefit of the doubt about their intentions or freedoms. This is mob mentality pure and simple and does not belong here (or anywhere really)! Please be human beings not monsters like this!!!

Photo description: The flag raising on September 1st, 2021 at Ottawa City Hall for Childhood Cancer Awareness Month. Mayor Jim Watson speaks at a podium while Jocelyn Lamont, Executive Director of Candlelighters Ottawa and 10 cancer kids and their siblings join them. Ollie and his CNIB Buddy Dog Hope are near the end on the right.

Last week I stood beside Ollie at City Hall during the Candlelighters Childhood Cancer Programs flag raising to mark September as Childhood Cancer Awareness Month. I stood among cancer families who have had unimaginable things happen to them while they battled their child's cancer for YEARS. I was teary as each child there who is a survivor or sibling of a child with cancer took their turn cranking the flag up. I was completely choked up when Ollie was the last to raise the flag with our patient mayor's help. It felt like planting the victory flag after a hard battle won. Just like war. Innocents. Kids who should be able to just be kids and not be aware of childhood cancer and suffering at all. Do they or others like them deserve to face angry mobs to survive?! 

 Photo description: Ollie takes his turn at the flagpole cranking up the flag with assistance from Mayor Jim Watson while Dawn, Hope and other kids stand nearby. 

As always, Jesus was right. The little children will lead us if we let them. They learn hate and mistrust from adults. It's not natural for them. They are pure of heart. They are accepting of differences and more tolerant than we are. They are always willing to help. This fall, let's all be like our brave children who just want to be well and go back to school. Ollie just wants to be with his friends and learn. He and so many others like him who have fought critical illnesses know too much about the world's agony and ugliness already. They survived it all and still want to rejoin the world with positivity and happiness. 

 Photo description: Ollie lines up a putt at a mini golf course in Ottawa while enjoying his last days of summer vacation. With a lot of verbal feedback given his blindness and some help navigating between the holes, he did very well.

If everyone does their part to keep each other safe, we can all get back to what we loved about our pre-pandemic lives. We can remember what makes life worth living. 

Send me (and Mario and Abby) your strength and prayers to help our courageous boy re-enter life without further anxiety and fear. We've had enough. Be like my brave Ollie and find the joy even during times of uncertainty. Wishing everyone a safe back to school (if yours haven't gone back already) and fall.