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!

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!

All I Want for Christmas is a COVID-19 Vaccine and a Victrectomy...

[Photo description: Ollie sits in his seat in the van resting his hand on Hope beside him when being picked up from school. The red seatbelt cover has a Medic Alert symbol on it and inside contains details on Ollie' s medical conditions in case of an accident.]

It's hard to believe that we are now less than two weeks away until Christmas again! Getting everyone here into the Christmas spirit has been a bit of an uphill battle again this year, but we've slowly gotten there. 

[Photo description: Ollie sits on the sofa beside a sleeping Hope while playing with a tactile Mini Mini-Golf game on the ottoman in front of him. 

As usual, Ollie was most like me, so was actually interested in celebrating the holidays and helped me to drag Abby and Mario into the spirit. We decorated the last weekend in November - earlier than we ever have. Mario thought I was crazy, but went along with it and tried to get Abby into it. She was reluctant. Digging deeper by talking about things revealed that everyone is now reminded somewhat about Ollie being diagnosed this time of year and having those first rounds of chemo in the weeks before, during and after the holidays. No matter how far away we get from active treatment, there are constant reminders of what we went through in those early days. 

[Photo description: Ollie wears an elf hat and Hope wears reindeer antlers while a roaring fire appears on the TV screen behind them.]

We talked about reclaiming Christmas and trying to think more about how grateful we are that we're all together and he's well instead. It hasn't been easy and there have been arguments and tears to get past this PTSD, but we're getting there. Abby and Ollie are now getting excited that Christmas is almost here as evidenced by them trying to guess what their gifts under the tree are. 

[Photo description: Ollie adds coloured bulbs to the ceramic Christmas tree that was my grandmother's as we decorated for the holidays.]

When he has his moments, Ollie has this incredible way of being able to talk about how he feels when he's feeling big angry or sad feelings and then to just recover quickly after hugging it out and appreciating the good moments that follow. Hope helps him a lot with this process. He calls her especially when he is sad after his anger has dissipated and he needs to move from sadness to acceptance to readiness to be happy again. He just hugs her and within moments he feels ready to face whatever the world throws at him next. As his mama my level of gratitude and love for this gorgeous and sweet-natured canine (who honestly seems to think she's human) knows no bounds. She spends most of her days very close to me at home. Mario laughs that I was the one who didn't want a dog before Ollie went blind and she is now super attached to me and I to her. 

[Photo description: Ollie hugs Hope while sitting on the back of the CNIB Christmas Float before the Carleton Place Christmas Parade on November 27, 2021.]

So it was our great pleasure to be invited to participate in the Carleton Place Christmas Parade with the CNIB Guide Dogs Program and show our gratitude for being part of something so life changing for us all. Ollie was so excited to be part of it and showed incredible patience while waiting for the parade to begin. Hope was so well-behaved despite all of the distractions, especially with so many other dogs around. 

We met several other volunteers who boarded Hope during her time at the CNIB Canine Training Centre. They were all overjoyed to see her and commented on how wonderful she looked, how well-behaved she was, and how well Ollie was doing with her. They are all incredibly warm and kind people who open their hearts and homes to help train guide dogs for blind and low vision people. It's incredibly hard for them to love these dogs and then let them go, but they do it selflessly to make lives like Ollie's better.

[Photo description: The CNIB float for the Carleton Place Christmas Parade is covered in Christmas lights and featured a blow up Snoopy riding a scooter and a decorated Christmas tree pulled by a yellow, white and black CNIB Guide Dogs van. Dawn, Ollie (in orange coat) and Hope are sitting on the float with the program lead of the CNIB Buddy Dog/Ambassador Dog Program, Buddy Dog duo Connor and June with mom Julie and other CNIB volunteers. CNIB Dog Trainers and Guide Dogs in training walked behind the float. Photo courtesy of Allison Noseworthy Warren]

The parade was incredibly well attended with approximately 5,000 people lining the streets. On the one hand this made me grateful to be on the float safely isolated from the masses, but on the other I felt so grateful for this little bit of normal for everyone. Pretty exciting for a 9 year old to be in a parade and we hope to be invited to do it again in future!

[Photo description: Ollie is assisted by Mario and Skateboarding Instructor Jordan as he does his first blind standing ride down a half pipe at The Yard.]

I haven't written that separate blog post about Ollie skateboarding yet, but he's making great progress and it's fun to watch him do something he loves so much and I love the respect that other kids at the skate park show him when they realize he's doing it blind.

[Photo description: Ollie and his skateboarding instructor Jordan are interviewed by Denise Fung of CBC Radio at The Yard.]

 CBC Radio taped an interview at The Yard with him and Jordan yesterday, so listen this week for him on Ottawa Morning! 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Last spring, Make-A-Wish Eastern Ontario asked if Ollie would be willing to be part of the 24 Days of Wishes. Each day in December leading up to Christmas, a Wish kid is featured on Ottawa's CTV News to encourage people to donate to help make Wishes come true for other critically ill children in 2022. 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Ollie's Door Day was December 10th and you can watch the CTV News segment on him here. We remain so thankful for the Wish that he was granted in March 2021 to have an epic playroom and he has literally used it EVERY day since then. It really is the Wish that keeps on giving and he helped the sponsor of his Wish, eQ Homes to make a video to encourage others to help them to Wish It Forward to help another deserving kid in 2022. They just posted today that they met their $10,000 goal to make this happen, so we continue to be grateful to eQ Homes and their supporters who have helped to inspire kids like Ollie with critical illnesses to keep going through all of the hard stuff to get their Wishes.

[Photo description: Ollie gets his first COVID-19 vaccine from a CHEO nurse while stuffie Llama Llama Blue Pajamas is hugged for courage. This red and white shirt reads, " Be a changeable - #sgeochangemaker - St. George Catholic School"] 

On November 28, 2021, Ollie was psyched to finally get his first COVID-19 vaccine at CHEO! Honestly when CHEO called me to schedule it I was teary and when he got it I breathed a deep breath of relief. It's not enough yet and he's scheduled to get his second in January and will get a third after that given his transplant makes him higher risk for COVID, but it is an incredible first step towards all of us feeling less anxiety about him being out in public, including school. Ollie felt no pain (my arm after my booster last week hurt for 4 days, but he says he felt nothing!) and aside from being a bit more tired for 24 hours and asking to go to bed early, he had no side effects. 

I have tried to explain to the naysayers online who cry that parents are "torturing" their children by vaccinating them with an "untested" vaccine that they have no idea what really torturing your child is like. That putting chemo, radiation and truly untested in children drugs into their little bodies to save their lives is torture for them and for you as the parent. And all are in the interest of saving their lives. Just like this COVID vaccine is for Ollie. That both of my very bright and aware children BEGGED to get this vaccine in the interest of protecting each other and trying to live a more normal, less scary life. That if my then 12 year old daughter could legally consent (and she was physically and mentally assessed to ensure that she was okay to consent) to give her stem cells to save her brother's life, she and others like her are very capable of deciding to get a vaccine.  

A few of Ollie's friends who were nervous about the vaccine or scared of needles told us that despite this they were going to get the vaccine anyways because they could be brave like Ollie. And then they sent us messages celebrating that they had done it! Again and again people help us and amaze us with their kindness. To-date in Ottawa 50% of eligible kids have been vaccinated in the first three weeks of vaccination clinics and we are thrilled to live in this community where people take care of each other. 

[Photo description: Ollie sits in an pathology exam chair in an exam room at the Eye Centre at The Ottawa Hospital - Riverside Campus waiting to be examined by Dr. Dollin]

On December 1st, Ollie had another appointment with his retina specialist, Dr. Dollin at The Ottawa Hospital at the Riverside Campus Eye Centre. First time ever for us at Riverside! Have to say, that we preferred it! Smaller hospital and less people at the clinic there as well as more modern facilities! Dr. Dollin verified that the pressure in his eyes is manageable with drops, but that ultimately we'd likely eventually have to do at least the lasering of his eyes to correct the pressure issues and stop unwanted blood vessels from growing and admitted that waiting to see if the blood from his vitreous detachment would dissipate on its own did not work. So the only way to clear out the blood pool and try to recover any of Ollie's peripheral vision in his right eye was to do the vitrectomy surgery. At my encouragement he and Dr. O'Connor at CHEO confirmed later that day that Ollie would have the surgery and to my surprise scheduled him for December 15th (tomorrow). 

He's actually having both surgeries (vitrectomy and lasering) on the right eye. It's just day surgery with the prep and recovery after taking longer than the 1 hour 45 minute surgery itself. He'll be sedated and they have promised they'll manage any pain he might have, but said generally there is more discomfort like a scratchy feeling than pain. Recovery is about 2 weeks, so it's good that we'd just planned a quiet Christmas with just us this year. Ollie is upbeat about the surgery and hopeful that it will allow him to recover a bit more vision. He knows better than anyone that there are no guarantees when it comes to medical procedures and the pursuit of wellness, but despite everything remains his hopeful, positive self and believes it will be worth it. We all feel confident, but would totally appreciate your prayers anyways that all goes well and is easy for Ollie. I'll try to at least write a short update when I can.

In the meantime, we hope that you are having a wonderful holiday season despite COVID-19 and the cases rising again. We all know too well now that while there is nothing like being together in person, there are many safe ways to stay connected to those we love whether near or far. Please get your COVID-19 booster when you are eligible to keep yourself as safe as possible and to help us to keep Ollie and other vulnerable people like him safer.  

Clearing Scans, Passing Tests and Accessibility Stories

[Photo description: Mario, Abby, Ollie and Dawn pose in their backyard wearing huge smiles and holding Ollie's hands as they surround him with love. Photos were done as part of the annual #PhotosForPhoebe event in support of the Phoebe Rose Rocks Foundation that supported Ollie and family during his stem cell transplant. Photo credit to Anne-Marie Bouchard Photography who donated her time and talent in return for donations to the Phoebe Rose Rocks Foundation]

If you've been hesitant to ask us about the results of scans and waiting for us to share, so sorry to keep you hanging! The MRI got delayed by a week due to someone else's emergency. Ollie was upset by the delay at first, but I reminded him that we got bumped because his scans are just routine and that there have been times when he was the urgent case and we likely bumped other people to accommodate him at those times. 

We did have the CT as planned and the doctor was kind enough to call me after I sent an apologetic email on the third day when we hadn't heard, that I was having bad dreams that she was trying to reach me and couldn't and I couldn't stand not knowing anymore. She called and asked me how I was and I said, "I'm okay." and she teased me saying I obviously was not because she just got my email and knew I was stressing out! 😄 She confirmed that the CT was clear and unchanged from a year ago! That helped to ease my anxiety quite a bit, although I knew that the MRI would scan his brain where most of his persistent relapses have been.

[Photo description: Ollie wears a mask and holds a sprayer from a garden hose on Hope 

who looks unimpressed as he gives her a bath at our local Pet Valu DIY pet wash]

He had his MRI three weeks ago and it was anxiety ridden for both of us. I sat watching for an hour and thirty minutes with no clock in the room, no phone and nothing to do but think and fixate. So I prayed and took a lot of deep breaths. Pretty much for the entire time. I prayed for clear scans and patience and healing for us all. I prayed for our army of kind people who came through for us in every way. I prayed for all families admitted to CHEO at that time including our little friend Isaac who was just starting his last admission upstairs on 4 North. I prayed for every kid we have come to know or have known for too short a time before they were taken too young during our own two year journey. I prayed for those brave kids and their families who unfairly battled the unthinkable and couldn't beat it and I also begged God for those that have made it so far to be well. For their families to know joy and normalcy again. And for my son never to have to ever again face death during my lifetime and well beyond.

[Photo description: Ollie sits at the kitchen table making a homemade 

pepperoni and green olive pizza.]

Ollie was great until they had to put his needle in to inject the contrast. He always hates that part. The technicians were as always terrific, but they did end up having to do extra scans of his back, so that took longer and by the end he was hollering at them to get him out before he lost it. By then he was tired, hungry, frustrated and his ears were hurting from the headphones. I honestly don't know how we did these unsedated before when he was on steroids all the time and was angry and impatient! He is a total wonder!  

[Photo description: Ollie sits building Lego mini figures at CHEO while waiting for his CT scan and drinking the contrast. He has to drink 1 cup every half hour and 4 cups in total, so it is a two hour ordeal.]

We found out two weeks ago during his checkup with Dr. Abbott that the MRI shows there is no evidence of disease, so remains cancer free! Thanks be to God! 

The MRI did still show that some inflammation remains in his optic nerves, and it's been 21 months since he went blind! Thankfully they did get a clearer picture of where the damage is including the detached retina on the left that we already knew about and the tear on the right eye that the retina specialist at The Ottawa Hospital suspected. Ollie also had eye ultrasounds and a check in with this specialist two weeks ago, so this should help him to decide what surgery Ollie will need on his eyes in the coming months to clear out that blood from the detachment and the tear, to fix these issues and stop the growth of the new blood vessels from strangling his eyes. We hope to know more in a few weeks. 

The MRI also shows further deterioration in his lower spine and right hip, but again we are being followed by the endocrinologist and bone specialist who have done other scans this summer and are monitoring this. They'll be sent his MRI and consulted to see if we stay the course or may need to consider treatment (injections) to help increase his bone density. 

[Photo description: Ollie wears a mask, a hospital gown and hospital pants, sitting in CHEO imaging with his white cane while waiting for his latest MRI]

We also did a special blood test called the Minimal Residual Disease (MRD) test. MRD refers to cancer cells remaining after treatment that can't be detected by other scans and tests. These cells have the potential to come back and cause relapse.. I had heard of this through other ALCL parents in the UK and Europe and asked our oncologist to see if we could it, too. As with most medical tests it is not an absolute answer. When looked at in concert with imaging scans like an MRI and CT, it can be a marker for whether additional treatment is needed at this time or not. 

Dr. Abbott as always listened to my request to do this even though it isn't typically done in North America very often or in very many places. She took the information that I gave her about other experts in the U.S., Germany and England who do this, contacted them and arranged for Ollie's sample to be sent to and analyzed in Germany. They agreed to analyze his sample and provide results for free and he became part of an ALCL study there as well. We thought we'd have to pay out of pocket to have the sample couriered to Germany, but Dr. Abbott asked OHIP and they agreed to pay for the sample to be sent! It just reinforces what I've learned over the past two years - if you don't ask, you don't get. 

 

I got a brief call from Dr. Abbott during one of her exceptionally busy days this week and she confirmed that his test result was negative. Meaning no evidence of any remaining cancer cells in his body! This is great news, but as always we remain cautiously optimistic as it is no guarantee that if we did the test again in future it wouldn't be positive. It also causes us to have to think about what we do next as Ollie remains on an ALK inhibitor drug and at some point we need to decide if we take him off and see if the transplant and the drug have been enough to kick cancer out for good, if we stay the course and remain on the drug for the full planned 2 years or potentially reduce his current dosage to see if we can reduce his weight gain, water retention and ease some of the anxiety that the drug sometimes causes for him. 

We have friends in the UK who recently took their child off of the drug and there was a relapse within a few months. That said their chimerism never reached 100% after transplant with an unrelated donor. We also know another family with a child in the U.S.A. whose child went off of the drug 6 months ago after over a year post transplant with an unrelated donor and 100% chimerism and they are doing great. It is so difficult to be making rational decisions without adequate data and case studies to do so. Few understand what it is really like to be making life or death decisions for their child. You'd think we would be getting pretty good at it, but it never gets easier. We'll be having another discussion with Dr. Abbott soon to determine the way forward. As always, we will share more info when we can. 

[Photo description: Ollie stands in front of the skate park at The Yard wearing a mask, a helmet and safety pads while holding his white cane and his skateboard]

In other (less stressful) news, I posted on social media recently about Ollie starting skateboarding lessons at The Yard and how the owner was keen to learn from Calgary's ALT Route accessible skate park project to help find safe ways for Ollie to skateboard, too. Anthony and Jordan at the Yard are good humans who just wanted to help give a blind cancer/stem cell transplant survivor kid a chance to do again what he once loved. 

I'm going to write a separate blog piece on how they're doing this with him soon, so stay tuned! For now you can imagine how happy this makes Ollie and how incredible it is for all involved to see him get back to something he is so passionate and fearless about. 

You should also check out this awesome documentary about ALT Route! 

[Photo description: Ollie and Hope wearing their CNIB gear visit the CNIB Canine Centre and greet an employee with the Canadian Animal Blood Bank.]

Recently Hope became another hero in our family (or perhaps just a bigger one since we already thought she was a hero for all she does to help Ollie) when she donated blood at a clinic organized by the CNIB Guide Dogs team at the CNIB Canine Centre in Carleton Place to help out the Canadian Animal Blood Bank. You never think about dogs needing blood in emergency situations, but they do, too and due to COVID their bank has been nearly empty until donor clinics have once again been allowed. COVID protocols were followed so we didn't get to be with her during her donation, but Miriam and Lucie at the Guide Dogs program were there to help her through it and she was so excited to see them again! She did great, donated an entire pint and is a universal donor! We are so proud of her! She also had a fun puppy playdate after as our fellow Buddy Dog duo Connor and June were also there at the same time. 

[Photo description: Ollie holds his dog whistle while Buddy Dog Hope sits at his feet and Buddy Dog June stands beside her waiting for a command.]

She and Ollie have also been invited to be part of the CNIB's float for the Carleton Place Christmas Parade on November 27th! Ollie is pretty excited about this, especially since it looks like we'll get to meet Ray (Hope's brother) and his handler at the parade! 

Hope and Ollie now have their own Instagram account (@cnib_ollies_hope) where we post shorter updates more frequently if you want to follow along there as well!

[Photo description: Abby sits on the sofa while a boom microphone hovers in front and above her during her interview for the new AMI-TV series We Are One]

We also agreed last spring to share Ollie's story of becoming blind with the Accessible Media Inc. (AMI-TV) team to be profiled in an episode of their new series, We Are One. Originally we were going to shoot it this summer, but COVID as usual delayed things and so we shot it just a couple of weeks ago. Interviews were done with us at home observing COVID protocols as we knew all crew members were double vaccinated. I think that the interviews are among the best and most honest we have ever given. 

 

[Photo description: Ollie and his skateboarding instructor Jordan walk up a ramp in the skate park towards a sign on the wall that reads, "The Yard" while the videographer and sound technician capture the moment.]

Chris Vallee is the host of the show and we "met" him online last spring because his story of overcoming an eating disorder as a teen thanks to a CHEO program was also profiled as part of the 2021 CHEO Telethon which Ollie was also featured in. He put us at ease right away and I felt grateful to have another CHEO success story telling Ollie's. Abby in particular responded so well to Chris. I watched her interview and was moved to tears so many times by the raw honesty that she displayed. As a teen now it's harder to be publicly vulnerable and I had given her permission and warned them that she may opt not to answer some of their questions if she preferred not to. As usual my children's strength left me in awe as she answered every question thoughtfully and purely as her best self. When Abby was done and she'd gone back up to her room to return to her teen life chatting online with friends, both the producer and the sound technician commented on how moving her interview was (and they see a lot of interviews). The crew was awesome and the sound technician later told me how much he loves working for AMI because of the compelling stories they tell and the amazing people he gets to meet like us! 

[Photo description: Ollie is second from the right with the ball while playing road hockey with friends Magnum, Will, James, Elias and Lewis in the school yard. The boom microphone can be seen overhead in the foreground.]

As part of the b-roll (fancy production speak for background images and video that they use as visuals while they use your voice from your interview over them) that we shot we took them to The Yard for one of Ollie' s skateboarding lessons, got some of Ollie's buddies from school together to play a game of road hockey (using his audible ball as he does at school) and they filmed part of one of Ollie's chess lessons with Josh. 

[Photo description: Ollie and Josh play chess masked in his playroom while the videographer and sound technician capture it.]

Abby, Mario and I are all doing well and keeping busy. Flu shots will be done for all of us as of tomorrow when Abby gets hers. It's heartening to see people going out and getting them more eagerly this year as a result of a heightened awareness of the need to take care of each other and trying to keep each other well and staying at work and school. 

As I reflect that on this day two years ago Ollie had his biopsy that would finally reveal what the bump was on November 19th, 2019, I am still brought to tears often by how much our little family has been through. Despite everything we are mostly happy, healthy and together. I am eternally grateful that we've made it thus far and so proud of all of us for working through it.  

Back to School

It's been an eventful few weeks. The kids are back in school and settling in  after many adjustments to being back in person for the first time since the COVID-19 pandemic began. 

 Photo description: Ollie poses with a big smile while holding his white cane on our front porch with his backpack at his feet on his first day of school for 2021-2022.

Ollie was so excited about going back that he woke up at 5:30 am the first day! As I snuggled in his bed with him hoping he'd go back to sleep for at least an hour, he talked to me softly. "Mom?", he said sweetly. "You don't have to worry about me today or be sad that I'm going. I'm so happy that it can't be anything but a great day!" My brave boy reassuring me because he knew how hard that day was going to be for me. Don't get me wrong - I was overjoyed that he was well enough to go back to school, but as with every milestone that we hit on the path to total wellness, it was overwhelming and reminded me of how much we've had to overcome to get to this moment that at times we were uncertain would ever be possible.

Photo description: Ollie and his vision itinerant teacher and educational assistant on the first day back to school in two years since cancer, blindness and stem cell transplant. Photo courtesy of Ollie's principal.

I took him and he was vibrating with excitement. No nervousness or fear at all. As we waited for his educational assistant to meet us we saw many friends who joyfully greeted us, most knowing how momentous this day was for us. They had followed our journey and nurtured us through it with frequent food and gift drop-offs, kind messages of support, financial donations and so many prayers sent our way. I held it together until Ollie and Mrs. Taylor disappeared into the school, then turned around and tears began pouring down my cheeks almost blinding me as I stumbled back down the path to my car. 

Through my tears I saw my friend Angie who is the office manager at school and goes to church with us. We've worked on fundraisers together and over the past two years she's had her own personal challenges, but she was always so supportive of us, even personally delivering things to the house for Ollie from school. She walked towards me with her arms wide open and enveloped me in the best hug as I sobbed. We were both wearing masks and we both felt that this was far more needed in the moment than the COVID caution we usually observe. It was the best hug and I was grateful for the empathy and compassion in it as I let go of so much pent up fear and uncertainty. 

 Photo description: Ollie plays road hockey with friends at lunch recess at school with an audible ball filled with beans. Photo courtesy of his educational assistant.

I don't even care that everyone watched as I had my break down. I deserve that after everything we've been through and endured. They all understood that and stood nearby in support. Many came up to me after to offer words of support and love. How blessed we are to have such an incredible village around us helping us to raise our child! He's doing great and has settled in nicely with few bumps along the way. 

 Photo description: Ollie plays basketball with a close friend at school. Photo courtesy of his educational assistant.

On the first day of school he had a moment of feeling left out as friends went ahead and played like they normally would inadvertently leaving him behind. Fortunately his kind E.A. helped him to problem solve and they went to find someone he could play with. We reminded Ollie that he'd been sick a long time and was now blind and the kids didn't know yet what he COULD do, so he'd need to educate and show them! Since then they play road hockey with his audible hockey ball, basketball with his jingling basketball and soccer with his beeping soccer ball. I've bought every adapted piece of sports equipment there is and they're worth every penny! His friends have been amazing at learning how to accommodate him by calling out who they're passing to so he gets audio cues to follow the ball, too. His teachers tell me how much they're all learning from him about accommodation and inclusivity and how well that will serve them all as they grow up. 

 Photo description: Ollie wearing a red hoodie plays soccer at school with friends using his beeping soccer ball. Photo courtesy of his educational assistant.

During rainy day recesses his friends take turns playing chess with Ollie on his tactile chess set and he delights in teaching them the new moves he's learning. He has a weekly chess lesson from a local young man who quickly rose to the challenge of teaching a blind kid and has gotten excited researching ways to make it easier for Ollie to learn and play. 

 Photo description: Ollie's hands on his tactile chess set to which we have added a Braille grid for him to learn the rank and file positions of the board. The white pieces have a little bump on top in order to distinguish the two colours and the black squares are slightly raised to enable him to distinguish each position on the board. We have one at home and bought another to send to school. You can also play checkers on this board.

Abby didn't start school until two days later and found the transition in the first days a bit overwhelming after 18 months of not having in person daily interactions with those outside of our family. She, too, has gotten more comfortable and happier as time has passed. 

Photo description: Abby poses on our front porch wearing a mask and her backpack on her first day of school for the 2021-2022 school year.

Sending them both back was the right decision despite the risks. We are grateful to both schools and all staff who have helped to make our re-entry a positive one. So far both have been safe, although Ollie did get his first cold post transplant after the first two weeks of school. We kept him home and watched him closely for COVID symptoms. He only had a sore throat and runny nose, so fortunately not COVID symptoms without accompanying fever and cough. I also kind of obsessively checked that he could taste and smell regularly and went in when he was sleeping to check that he had no fever or laboured breathing. We knew that there had been a few cases of colds in his class and that those kids had negative COVID tests, so I just kept breathing deep and reminding myself that if nothing else we've learned to triage symptoms through cancer and not jump to the worst conclusions every time. When the worst you can imagine has already happened to you, you tend to have heightened awareness of when things are normal and when they're not. 

So we booked the first COVID test we could for a few days later just in case, but the day before his test he was bouncing back and feeling better just 4 days in. By day 5 he was back in school and I was thanking God and Abby once again for his new immune system that has now been tested and proven to work well. Naturally from the stress, I got his cold within a few days, too. It's the first illness I've had in the 2 years since his diagnosis. My therapist says that's a good sign that I've let my body relax to the point where I allow myself to get sick. That it means that at least subconsciously my body and brain know that he's no longer in the same danger and that even if I get sick it'll be okay now. I guess I have taken the armour off or at least part of it.

I have been trying to strike a balance between spending time on processing my feelings about everything and getting things important to me done these past few weeks. Each day I spend some time walking Hope, thinking and praying, organizing medical appointments for myself and Ollie and trying to knock a few things off of my lengthy to-do list. After two years, there are so many things we've not had the energy to do around the house and I hope to take care of some of them before I go back to work. 

 Photo description: CNIB Buddy Dog Hope gives Dawn the "side look" while posing for a selfie during a walk along the Ottawa River. A beautiful sunset over a bridge on the river is in the background.

Ollie has CT and MRI scans coming up tomorrow and blood tests in mid-October. These are pre-occupying my mind at present and causing my sleep to be erratic over the past few days. He shows no symptoms, but it's been too long since his last scans and scanxiety is real and hard when you're battling PTSD. This is part of the new "plan" for Ollie that his oncologist and I have puzzled out together because there is no roadmap for relapsed Anaplastic Large Cell Lymphoma. But we are trying to remedy that, too. 

To that end I was asked by Ollie's Toronto oncologist to participate in a meeting last week with a Stanford University researcher and an American oncologist who is an expert in ALCL and head of the Children's Oncology Group (COG) ALCL Committee. We discussed outreach to ALCL parents to encourage them to participate in an ALCL relapse study. It's early days and will be a longer term project, but I am proud to have been consulted and cannot help but feel that it is a good step towards collecting information that could help to standardize relapse treatments in future. I am grateful to my ALCL parent friends around the world who are also raising awareness so that together we may make a difference for other ALCL families and spare them some of the fear of not knowing how to treat this in future. This makes me feel like all of the agony that we have endured may at least result in better outcomes for kids like Ollie in future. I am grateful to play a small part in positive change.

Ollie had a consult with the retina specialist at The Ottawa Hospital a couple of weeks ago. Turns out the retina specialist is married to Ollie's incredibly kind and brilliant radiologist so he already knew all about Ollie and our story. After examining Ollie he told us that he can see that blood has pooled behind each of his eyes. On the left side likely because of the retina detachment and on the right likely due to a small tear. He still has slight peripheral vision in that eye, although the blood is making it more difficult to see anything. The blood will need to be removed through a surgery. In addition there are new abnormal blood vessels growing (Neovascularization) that need to be stopped through a laser surgery. 

 Photo description: Ollie's eyes are examined by Dr. Dollin at The Ottawa Hospital Eye Institute.

He felt that even if we'd caught the retina detachment earlier he'd still have a very low chance of recovering any vision in his left eye given the extensive damage and with the passage of time due to COVID backlogs, there is no chance of re-attaching and seeing anything now. The pressure in his left eye is twice as high as it should be, so we need to reduce that and have been given eye drops that he takes twice a day for this. 

Essentially we need to keep his eyes healthy so that he can keep them both. That's the real goal now and if we can clean up/repair the right eye to keep any peripheral vision/light that he has, that's our hope. He also intends to consult with his glaucoma specialist colleague as he feels we may want to consider using some of their techniques to help Ollie.  The next step is that he has an ultrasound on his eyes in October 15th followed by a follow-up with the retina specialist. At this point they'll have a clearer picture and actual recommendations to move forward.

To be honest I was disappointed that it wasn't better news. Although I have accepted Ollie's blindness and didn't honestly expect any significant improvements in his vision, I had hoped re-attachment was the way we'd go to preserve the eyes. Ollie had a different viewpoint about the appointment, though. He said it was a good appointment and when I asked why he said, "They didn't say there was nothing they could do, Mom. Doing something and keeping my eyes is way better than them saying there's nothing they could do!" As always my brave, wise beyond his years boy surprises me with his hope and positivity. And if he can be okay with it, so can I. 

On the philanthropic front, Ollie participated in his school's annual Terry Fox Run/Walk recently. He told us he was walking for all of the friends that he had at CHEO who were still battling cancer. Most of his school friends and a few at other schools were walking for Ollie. I got the most heartwarming photos from parents we know of their kids wearing their Walk stickers which say, "I'm running/walking for:" and where they'd written "Ollie". So thanks to the incredible Terry Fox, my boy is continuing his legacy by inspiring others to keep raising money for cancer research. Giving and kindness are cycles we are so glad to be part of.

 Photo description: Ollie wearing a mask doing the Terry Fox Walk with his white cane in the school's neighborhood. Photo courtesy of his educational assistant.

I was also pleased to do a testimonial for the Department of Immigration, Refugees and Citizenship Canada last week for the Government of Canada Charitable Workplace Campaign (GCWCC). My friend Allison, with whom I used to work at Treasury Board asked me if I might speak at their event and highlight some of the many charitable organizations that have helped us. I was glad to have the opportunity to encourage others to give to so many worthy organizations and to do my part to remind public servants why we give - because it was our family this time, but could happen to anyone. You never expect to need the support of your community in this way, but are so grateful to have it when you need it. My testimonial seems to have been well received, although the Deputy Minister and Assistant Deputy Minister noted how emotional they found it and I can understand that as I am totally honest and open about it. By the end of doing these I typically feel like I have an emotional hangover. Why do it then, you might ask? Because someone needs to and because it is part of my healing process to get it all out and to try to create a legacy of good coming out of it all. And I'm tired of the stigma that we must hide away our feelings of sadness and anxiety. Why is it okay for so many to display anger openly these days over their disagreement with COVID restrictions and mandates, but still not okay for the rest of us to share genuine human emotion that may actually evoke the empathy that we so desperately need in the world right now?! And I always try to share my honest feelings including the incredible gratitude and wonder that we've felt over our son's survival and the kindness we have been shown constantly. I'll keep doing it as long as I keep getting asked and feel it may make a positive difference in the world.

We were thrilled to hear that Pfizer had submitted data to Health Canada this week as a precursor to their request for authorization of the COVID-19 vaccine for children ages 5-11. Ollie asks me daily if there's any news. He's waiting impatiently to get his vaccines as he knows it will be a game changer for us and finally allow us to live as normal a life as possible without the constant fear that he will get COVID and be seriously ill or worse. He desperately wants to be able to have regular playdates and attend birthday parties like a normal kid. To go out in public without us trying to keep him away from other people. To be able to hug people (still with masks on for a while no doubt) without fear. I want that for all of us, too. We're hopeful that before Christmas he'll have at least two doses and that maybe we can even see family and our closest friends then. We owe them all the biggest hugs after doing so much to help us save Ollie these past two years.

So wish us luck and send us your prayers for clear scans this week and good blood tests later this month. We'll update you when we can. In the meantime, have a happy Thanksgiving, but please be safe if you are seeing family and keep your gatherings smaller than normal to reduce the risk of COVID numbers increasing drastically after the holiday.