COVID Club

[Photo description: A rapid antigen test shows two lines revealed, confirming that Mario was positive for COVID-19 the Wednesday after March Break.]

COVID-19 POSITIVE. All of us (started with 1 and eventually all 4). 

That's what we've been up to for the past 2 weeks. I'll reassure you all upfront that we're ALL okay. Especially Ollie.

On the Tuesday after March Break Mario came down with cold-like symptoms while the kids were at school, so I demanded he put on a mask and go to the basement immediately and stay there (he thought I was joking, but I assured him I was very serious). I set about ensuring that he had one of our largest HEPA air purifiers down there as well as linens, masks, Lysol wipes and the mini fridge supplied with drinks to keep him hydrated. Thanks to Ollie's post transplant period where we took no chances and sought to keep all bacteria and viruses away from him we have a large HEPA in every common area in every floor of the house and clubhouse and a small one in each of the bedrooms for a total of 7! We also always have a significant supply of Lysol wipes, masks, sanitizing spray, hand sanitizer, cold and flu meds and supplies, and many thermometers as well as a pulse oximeter to measure oxygen levels. Sadly we've had to be ready at home for any and all medical issues for two years, but happily haven't needed the COVID-specific supplies before now. 

[Photo description: A screen capture of the Ottawa Wastewater Meter's COVID-19 graph showing the dramatic increase in COVID over the past 3 weeks.] 

As I last reported in this blog, Ollie got his third COVID vaccine the Wednesday of March Break, so that gave us some reassurance, but on Wednesday when Mario tested positive for COVID, I called Ollie's team at CHEO and tried not to panic as I left a message for Nurse Julie on the post transplant team to relay to Dr. Abbott. I explained the situation and asked her to call me back with any advice and to confirm if there were any anti-viral drugs or immune system boosters that were approved for children (I was pretty sure there was not). 

[Photo description: A graphic showing Neutrophils, Monocytes, Eosinophils, Lymphocytes and Carolyn is and their roles in the body's immune system. Copyright of the Cleveland Clinic.]

Julie called me back quickly and confirmed that there were no approved drugs or treatments for COVID for kids in Canada. Since only 4 cancer drugs specifically for kids have been developed and approved in the past 30 years, it did not surprise me that we had no options for our immuno-compromised kids. Sad that no COVID drugs available to adults have been adapted for kids yet, but considering we don't even have vaccines for kids under 5, again not a surprise. She did say that she was consulting with the CHEO pharmacy and oncology teams on his specific situation and would call me back later that afternoon with any further information. 

Thankfully they were well-familiar with his case after two constant years of following him and she quickly called me back. They had verified that the cancer inhibitor drug that he is on (Lorlatinib) is normally an immune system suppressant, but noted that since he's been on it constantly for 20 months now and his bloodwork (especially his lymphocytes which help fight viruses and make antibodies) has been stable, they felt he was strong enough and much less likely than the average immuno-compromised person to have serious illness from COVID. They did warn us though that immuno-compromised people can have symptoms hide or linger for longer, so he'd have to isolate and stay home at least 10 days or until he had no symptoms and a negative COVID test.

[Photo description: A graph of Ollie's lymphocytes since his Nov. 2019 diagnosis.]

Prior to treatment his lymphocytes were at the bottom of what would be considered normal. This explains why he seemed to get every bug possible when Abby was able to avoid most of them. During cancer treatment and stem cell transplant they were below the normal low and this is what makes things dangerous for immuno-compromised people - their inability to fight off common bacteria and viruses.

Thankfully since he was a year post transplant he's been in the coveted normal high range (the best place to be for fighting viruses). Honestly I've never looked at the chart like this before for context and I wish that doctors would do this risk analysis before the onset of COVID symptoms for all immuno-compromised people. Not that this would be a guarantee that he wouldn't have Long COVID, and indeed we recognize how incredibly lucky (blessed really) we are that our immuno-compromised warrior sailed through COVID easily. 

[Photo description: Dawn wears a KN95 mask until all family members tested positive for COVID-19.]

So when Ollie had a dry cough on Friday morning 3 days after Mario's symptoms began, I was scared, but felt comforted by the opinion of his oncology team. I had prayed all week that if he had to get it (if any or all of us got it really) it would be easy for him, have no long term side effects and help to finally allow us to let go of another significant fear. I kept him home (he and Abby had continued to go to school although Mario had symptoms, but were following the rules and also continued to mask despite the mask mandates being dropped earlier in the week) and immediately alerted his teachers that he was ill, apologizing and hoping that they would be okay. Both members of his one-on-one vision itinerant team told me not to worry because so far they were testing negative and had continued to wear their N95s around him all week (just as he continued to wear his), so they felt that the likelihood of them getting it from him was low. I am relieved to report that they look clear 10 days after their last exposure to Ollie before symptoms appeared! Masks DO work when they are well-fitted N95s and KN95s and worn constantly, especially indoors (although Ollie had continued to wear his outdoors, too at school to keep himself and others safe).

[Photo description: A package of Lysol wipes, disinfectant spray and a KN95 mask.]

On Saturday morning Ollie was (predictably) COVID positive. 😔 At that point I told Mario that they might as well isolate together so I could attempt to sanitize as much as possible and get some things done as it looked like it was likely inevitable that I'd get it, too and may not feel up to doing the day to day things that are necessary to keep our family going. Ollie was feeling pretty giddy on Saturday about not being really sick after so much stressing about it for two years. He jokingly said he and dad were starting a COVID Club and Abby and I could soon qualify for membership. At the time I was not amused, but looking back at him joking and singing and dancing through it all, I'm struck by what a relief it was to all of us that he got it, and simply kicked it's butt like he did lymphoma and stem cell transplant. He is a complete medical and spiritual wonder!

So leaving him in the clubhouse with Mario happily building Lego, I frantically did things like order groceries, do the mountain of laundry, ensure we had sourced enough Rapid Antigen Tests to last us until we were out of isolation, ordered more masks as we were running low on Ollie's preferred KN95, etc. Don't even get me started on the monthly cost of KN95s for all of us to have multiples everyday! It's like going back to paying for disposable diapers again! 

And yet, I know how privileged we are that we can still afford this even as I've been on reduced salary for two years. And to that end, I haven't actually shared that I am now on week 4 of a gradual return to work part-time time, slowly moving towards full time over the next two months. That certainly added to my stress as well since I knew Mario and I would have to juggle Ollie while he was home for a minimum of 10 days with COVID so that each of us could still get our work hours in. Thankfully as always, both of our employers were very flexible and understanding. 

[Photo description: A large LEVOIT HEPA air filter in each of the common areas like the living room/dining room, basement TV room and in the kids clubhouse spaces.]

Mario's virus had progressed through the week to sneezing, congestion, cough, runny nose. By Day 5 he was mostly clear, with just a slight runny nose persisting. Naturally that was Saturday night, and by then both Abby and I had scratchy throats. Sunday she and I tested positive. She had the dry scratchy throat, sneezing and a runny nose for 4 days and then it disappeared and she was symptom free, but still positive until the following Sunday - 8 days after symptoms appeared. Mario's took 9 days to be negative, Ollie's 7 (noting that again it could be hiding so we kept him home the full 10 days) and mine was 9. So this idea of isolating for 5 days is ridiculous. We know there are many running around unknowingly infecting others because they isolate for 5 days and go back to public life. Some apparently are even unaware that after having it you're required to mask in public for a further 10 days after your isolation of at least 5 days! 

[Photo description: A compact LEVOIT HEPA air filter in each of the the bedrooms.]

To us it doesn't matter as we'll be wearing masks for the next weeks anyways in hope we can get past this without catching it again. And YES you can catch it again as we know people who have 3 and 5 weeks after the first time - each time we'd have to isolate for 10 days from onset of symptoms with Ollie, so this is not really making us want to take off the masks entirely yet. Plus, we now have so many little immuno-compromised friends from CHEO and would be mortified if we brought something in to them when we have to go for bloodwork, checkups and 6 month scans over the next month.

[Photo description: Ollie going to bed in his clubhouse while hugging his Hope on day 2 of COVID symptoms.]

I had confirmed with his oncology team that he had been COVID positive and let them know how it went. They were so glad to hear that it had been easy for him and the vaccines and his immune system worked fantastically well. At my request they moved his 6 month scans from April 13 to May 11 as I have heard from many oncology families online in support groups that their loved one went for scans right after either having COVID or the vaccine and the scans lit up on their lymph nodes causing panic and uncertainty over whether it was the cancer back or just COVID. So we want to avoid that stress entirely, especially as Ollie had BOTH the vaccine and the virus in a 3 week period. 

[Photo description: Ollie writing a story on his Brailler about us all having COVID.]

The few friends we did tell were as always wonderful to us. Checking on us regularly and offering to get anything we need, bring food, etc. Honestly people have already been so overwhelmingly incredible to us, that we need nothing more! We felt bad when other friends that we would normally like to help out had COVID in recent weeks and months and we could do so little for them given our need to shelter Ollie. 

[Photo description: Delicious food dropped off by dear friends.]

Ollie's amazing Vision Itinerant teacher shifted years quickly again and from Tuesday to Friday last week taught Ollie English, Braille and Math online each morning.  We even squeezed in a "Tech Club" meeting online one afternoon for him where he and two of his buddies from the Vision Itinerant program met with Miss Meghan who is their tech specialist teacher who helps them all to learn how to use the accessible features on their Ipads. 

[Photo description: Ollie attends online classes this week from home. Here he is in Tech Club.]

Abby did asynchronous learning this past week and her weekly meeting with her tutor enabled her to get caught up on anything she missed or was uncertain about. Overall she missed her friends, but she was pretty good all week and I could tell she was relieved that she had not been the one to give COVID to Ollie. I know it's been a huge fear of hers, but didn't really realize how much it has affected her until we got COVID. We've all gotten more hugs from her in the past week since we were all positive than we have in the past year. I think she was so terribly afraid of getting it and passing it on to one of us and getting him sick that she actually withdrew from physical affection (uncertain whether knowingly or sub-consciously, but either way heartbreaking) to keep us all safe. We still have a lot of work to do to help our kids feel loved and safe again.

[Photo description: Two positive COVID tests - Abby's on the left with a faint second line still and Dawn's on the right with very evident second line - on Day 7 for both since the onset of symptoms.]

So here are the things I've learned about COVID (in Ontario anyways) over the past few weeks:

1. Isolating for 10 days is what is really needed and 5 will do little but give people a false sense of security while the go around likely infecting others.

2. People are either perpetually confused about the rules or just don't care to follow them anymore. 

3. Masking after having COVID for the 10 days is essential to protect others from getting it as you can be contagious for up to 10 days after onset of symptoms.

4. Many people went away internationally for March Break  and did not mask for the 14 days after, as is the law federally. I think this is ignorance, not defiance, but am certain it is contributing to higher numbers. 

5. Although we didn't go out of the country, we did keep the masks on and clearly have prevented further spread of the virus when we unknowingly had it and were not yet symptomatic. Masks work. 

6. A family of four will need at least 7-10 days worth of RAT tests stockpiled to test regularly. That's 28-40 tests or 6-8 kits of 5 tests each. Thankfully we had 8 boxes and still have about 9 tests left, so now I'll go out for the next week or two and stockpile again. The government should simply have provided every family or individual with this from the start. Picking up one a day whenever you see them is nonsense!

7. Be prepared with enough food and supplies for at least a week of isolation. 

8.  While I hate the defeatist attitude that we're all going to get COVID, it's become painfully obvious that this is the Ontario government's strategy at this point...abandon all protection measures and let everyone get it (likely to see if we finally achieve the elusive herd immunity or maybe just to get people to accept that COVID will now be business as usual like any other virus). Sadly it does seem inevitable that we'll all get it the way things are going (and I say this as the perpetual glass half full girl).

9. Knowing that this is the case, be prepared by being fully boosted. It literally made COVID so easy for all of us including the one most at risk of serious illness. This includes boosters for adults, teens and get your kids who are eligible vaccinated, too. The number of kids hospitalized with COVID for the first Omicron wave was significantly higher than any previous wave even as they say the virus is "mild". Our experience is that it likely will be if your kid is vaccinated. Data still isn't in on whether there will now be more kids with long COVID, but it's a certainty that we'll have more waves, so best be prepared going forward.

10. There is no feeling like the gratitude you feel when your kid survives something no one was certain they would. We've now felt this a handful of times in the past two years. Please trust me that you NEVER want to be in the position of seriously having to pray that your child will cheat death and survive.

11. Science and God remains the most powerful combination around.

Another milestone reached, another fear overcome, another blessing received and celebrated. Now let's all do our best to get through this wave, being humane and continuing to protect the most vulnerable who may not be as lucky as we have been. 

The Epic Masked Stem Cell Crusade - 2 Years Later

[Photo description: Ollie is on ice skates again for the first time since going blind in January 2020. He is wearing a hockey helmet with face mask and holding his white mobility cane with a Dakota tip on it.]

Almost two months have flown by since we last posted an update! And it seems fitting to post today on the two year anniversary of the day that we left for Toronto to start Ollie's stem cell journey that would begin really well (despite the pandemic's arrival at the same time) with Abby's donation on March 31st, take us on an unexpected detour just days later when he relapsed a second time and would eventually need brain and spine radiation and a brand new drug untested in children obtained under compassionate grounds when the first and approved "miracle drug" didn't work for him, and eventually lead us back to a successful transplant in July 2020 and an incredibly smooth recovery to-date. 

In fact today Ollie is +610 days since transplant and the stress of just trying to get him through all of this and past the first critical 100 days after transplant seems decades ago to my brain and yet like yesterday in my heart. Especially this week as we heard that another CHEO and Sick Kids transplant family lost their brave warrior after 10 years of battling and over a year of post transplant complications that his poor little body just couldn't overcome. Another child taken unfairly and too soon, and a poignant reminder of how blessed we have been. All of our sacrifices have been worth it to keep him and some sacrifice so much more and still don't get to keep their babies. Please pray for the family of Mackenzy who have sacrificed SO much, but are so grateful to have had the past 10 years with their angel before letting the Creator take him to paradise.

It also reinforces why we are continuing to be diligent and masking (at least for a while) even after the mask mandate was dropped in Ontario this week. We continue to evaluate our risks, mitigate them where we can, sacrifice where needed. I just can't remove all protections and hope for the best yet with all that we have experienced and seen. Despite all of this we still live full lives of joy and gratitude because we understand too well how close we've come to the complete devastation of losing our child. There but for the grace of God go I.

[Photo description: On the left is Ollie's now well-loved official hockey puck from the Canadian Blind Hockey Association, which is about 3 times the size of a normal puck, is made of metal and has metal balls that rattle. On the right is a normal sized puck for perspective.]

These past two months since we last updated have been healthy and filled with busy activities like ice skating, playing hockey, and trying cross-country skiing with Ollie's class to name but a few! The kids have been blessed to attend a school in an urban area with a huge green space nearby so that they get to enjoy it at school often. From skating at nearby Champlain Park to cross-country skiing on the nearby KichiSibi Trail, Ollie's teachers have taken full advantage of the beautiful winter and gotten them out regularly to enjoy it. 

[Photo description: Ollie plays hockey with school friends at Champlain Park during outdoor gym class. Since Ollie is still learning to skate again since going blind, he opted to wear ice picks on his boots to enable him to keep up with class mates as they played.]

Given I have been in my last months off on leave, I took the time to go and help with Ollie so that he could experience it all safely and I could learn how to better support him to do it all with his peers. I remain grateful to his teachers and educational assistants who always help us to find a way to ensure his safe inclusion in every activity. Having a bird's eye view on how he interacts with his peers and vice versa has also been tremendously comforting. I am so happy to report that his friends go out of their way to help him and include him in all things. The very first day he was on skates again, two of his closest buddies were never far from his side, encouraging him and praising him for how well he was doing, saying how much they knew it was so much harder now that he was blind and he was doing it anyways. I was in tears and sent messages of gratitude to each of the boys' parents to thank them for raising amazingly kind humans. 

[Photo description: Ollie learns to cross-country ski on the KichiSibi Trail with his class, while assisted by his Educational Assistant, Mrs. Taylor.]

I know from experience with Abby already that these years where he'll want me to come to field trips and special events with him are for a limited time only and will end too soon, so I am so grateful for this time with him. And for now as he gets used to doing everything blind and all of the firsts are happening, it comforts us both to do it together. 

Thankfully while we cautiously participated post-Omicron, Ollie was happy to continue wearing his mask even outdoors and we were able to do all of this with relatively low risk for Ollie. 

[Photo description: Abby gets her COVID-19 booster at the #Jabapalooza vaccine clinic for immuno-compromised families in early February 2022. Dr. Nili Kaplan-Myrth and her team has organized vacination clinics for the vulnerable across Ottawa since vaccines were first available and actually gave Abby her vaccine. It was an honour to meet her and Abby even allowed her to take and Tweet out this photo of her!]

Abby has been so much happier being back at school, although in the past two weeks as it was announced that vaccine mandates would be removed in schools, she was highly anxious about it. She wants to keep her brother safe, but also wants to be "normal" and doesn't want to be the only "alien" wearing one. Thankfully there were 14 kids in her class (of 28) today wearing them and ALL of her teachers did as well. We remain thankful for all of these people who are protecting themselves and others like Ollie. We totally get that others want to get back to "normal" and hope that someday soon that will really be possible for everyone and not just because our provincial premier is looking for votes in an election that will be called any day now.

[Photo description: Ollie does a snow angel in the park on a sunny day as friends hold a Childhood Cancer Awareness flag nearby.]

We've been pleased to support the 5th annual Snow Angels for CHEO (#sa4cheo) this year again (our second year involved) to raise needed funds for CHEO's Oncology clinic and ward. The money is still being tallied as the campaign is just ending now, but it looks like the best ever result so far with more than $12,000 raised (last year it raised $8,000)! 

[Photo description: CHEO Bear and Ollie dressed as Cookie Monster and wearing a mask on his face give thumbs up while CNIB Buddy Dog Hope in her CNIB yellow vest sits at their feet.]

Ollie even got to participate in an event where most of the volunteers and CHEO Families featured in this year's campaign got together at CHEO with CHEO Foundation staff to make snow angels. Even Buddy Dog Hope came along for the fun! 

[Photo description: Ollie does a snow angel in his Cookie Monster costume at CHEO.]

[Photo description: A peanut butter and banana sandwich with a dog biscuit sticking in the middle made by Ollie as Hope's birthday cake for her third birthday on February 28, 2022.]

In late February we celebrated Hope's third birthday and in early March we celebrated one year since her "Gotcha Day" when she came to us! She has been among our greatest blessings over the past year and the confidence she has helped to bring out in Ollie since then is evident everyday.

[Photo description: Hope lies on her bed with her new football chew toy from Ollie on her 3rd birthday, February 28, 2022. A birthday sign made by Ollie is stuck to the wall above her head.]

Hope will be donating blood again for the Canadian Animal Blood Bank on April 2nd at the CNIB Canine Centre. Her (and Ollie's) summer is also shaping up pretty great as she'll be at CNIB Lake Joe a couple of times with the whole family and with Ollie and all Ontario CNIB Buddy Dog duos! 

[Photo description: Ollie and friends sit in an arcade race car game at a recent birthday party.]

Ollie got invited to a dear friend's birthday party recently and had a blast at laser tag. Mom had to tag along to be his audio guide and eyes, but he had so much fun! After the party in the arcade (it was way quieter in there after the party as it was dinnertime for most so it had cleared out) his friends grabbed Ollie's arm and lead him around the games, explaining everything and helping him up into some of the games. I watched in awe as 9 and 10 year old boys took responsibility for his safety and helped him to just be one of the guys. 

[Photo description: Ollie and friends straddle a motorbike racing arcade game at a recent birthday party.]

As a parent of a special needs kid you fear so much that your child will be excluded or made to feel less somehow. Even though we have built him up over the past two years to feel that he is NOT broken and still a normal kid who just needs a little accommodation or modification to do the same things as the other kids, I've worried that this would not be enough and his tender heart would be hurt by those who don't understand. So grateful that my fears were for the most part unfounded and he and his friends have all adapted so well and normalized it all for themselves. Kids are incredible when we teach them to accept and adapt.

[Photo description: Ollie stands in the kitchen holding his last cane bought in August 2021 and his new cane that just arrived. The old cane was a custom red for Ironman and the new cane is a blue and red homage to Captain America. He has grown so much in the past 7 months that his new cane is 6" longer than his last!]

Ollie is growing rapidly both physically and intellectually. We just received his new cane. His old one was bought 7 months ago and was 44" and his new one is 50"! Some days I wonder if the radiation he's had from treatments have made him a mutant as his feet have also gotten huge and he is now wearing a MEN'S SIZE 9 shoe!!!

Intellectually he is doing fantastic at school and is completely caught up with his peers despite missing the better part of 2 years of full-time school. He also recently had a Braille reading assessment. At the beginning of the school year his Vision Itinerant did a benchmark assessment and found that he was reading Braille at about a grade 1 level. Not surprising as he'd been a late reader before cancer and had just finished grade 2 a bit behind the average in reading independently. Plus his spelling was behind from missing so much school over the past two years. The latest assessment showed that he is now reading Braille at a grade 4 level!!! So he's advanced 3 years worth of progress in 6 months. A powerful combination of determination and a great teacher have made all the difference and his dedicated vision itinerant teacher last year focusing on his Braille literacy so he'd know it inside and out this year gave him an incredible basis to quickly launch from this year!

[Photo description: Matt Bennett, Senior Director of Corporate Partnerships and Consumer Products for the Ottawa Sports and Entertainment Group that includes the Ottawa 67's and the Ottawa RedBlacks sits in the stands at a recent Ottawa 67's game to bring Ollie a new 67's jersey with his name on the back and his favourite number 7. Friends and our family look on.]

During March Break we were invited to attend an Ottawa 67's game and bring some friends. Matt Bennett had heard that the 67's jersey that they gave Ollie when he was relapsing in Toronto (when Ray Skaff from Gabriel Pizza brought us pizzas and presents like the jersey) was now way too small and he told me to bring Ollie and he'd have a new one ready for him! 

[Photo description: A bald and relapsing Ollie wearing his first Ottawa 67's jersey in April 2020 in Toronto on the left and Ollie today wearing his new 67's jersey and a Canadian Blood Services Hockey Gives Blood hat at the recent game on the right.]

 The 67's game was our first public event in 28 months since diagnosis and we figured we'd better get out before the mask mandate was dropped and so many would be out without them, putting Ollie at greater risk. 

[Photo description: Mario helps Ollie to put on his new 67's jersey. the back reads, "OLLIE" and has the number 7 on it, which is Ollie's favourite number and has actually been retired by the 67's in honour of two previous players.]

[Photo description: Ollie braces for his third COVID-19 vaccine at CHEO.]

Also during March Break, Ollie got his third COVID vaccine at CHEO. Because he's immuno-compromised, he needs three instead of two for the initial doses. Now we wait two weeks for it to be effective and pray that he has an antibody response similar to others with a healthy immune system as many with compromised immune systems have even less effectiveness. 

[Photo description: Ollie wears his One Year in Remission t-shirt at CHEO while holding his mobility cane and a stuffed dog that he got after his third COVID vaccine.]

We've also recently reduced his t-cell kinase inhibitor (TKI) drug Lorlatinib from 100 mg to 75 mg in hopes it will reduce the hunger, weight gain, and paranoia he's often experienced on it. Since stopping two weeks ago his appetite has gone down significantly, and he seems better able to cope with most of his anxiety. He has MRI Ave CT scans scheduled for April 13 as part of the twice annual scanning that we have put into his post-treatment plan/roadmap that Dr. Abbott and I have agreed to. Hopefully it will confirm that he remains in remission with no evidence of disease. The plan is still to take him off of the TKI in July after two years and that will also allow us to give him his final re-vaccines (he can't get the live ones - measles, mumps, rubella and varicella - until two years post transplant and he's off of the Lorlatinib). Then we'll know for sure if the transplant really was successful or if it was the Lorlatinib simply holding the lymphoma back. 

[Photo description: Ollie and Mario give thumbs up while Abby and Dawn stand beside them. All are wearing face masks and Medieval Times crowns.]

We also decided to go to Toronto for the last few days of March Break to "Take Back Toronto" so that the kids no longer associate it with illness and isolation after the 5 months we lived there during transplant. The kids were begging us to go somewhere and again, we knew it would be harder once the mask mandate was dropped. We deliberately chose a hotel far away from downtown in the north end of Toronto that was very quiet. 

It was a fast couple of days so we didn't really get to see more than one family of friends who supported us so much through cancer and moved to Toronto this school year. It was lovely to see them, though and as always they were super careful to keep us as safe as possible. We were so glad to see them and miss them a lot. 

[Photo description: Dawn and Abby about to eat dinner at Medieval Times are wearing crowns and Abby is hiding her face behind a light up unicorn sceptor.]

We did a bunch of shopping (Abby was SO happy) and had takeout from the few favourite restaurants only found in Toronto.

We went to one public event which was Medieval Times as we'd promised Ollie long ago before cancer and never made it there. We also figured big arena was better than small restaurant, picked a mid-afternoon seating to avoid big crowds, asked to sit in the accessibility section far away at the back to be away from most other people and wore our masks except while eating. The kids actually had a blast (even Ollie who didn't think he would and was initially bummed not to be able to see it) and we spent a small fortune on unicorn adaptors, light up swords, as well as wooden shields and swords. Considering how little these kids have been out in public the past two years and all of their entertainment has been online, this seemed a small price to pay to make the event as fun as possible! 

[Photo description: Ollie shows off his new Medieval Times Shield and sword in the hotel room in Toronto at the end of March Break 2022 while Mario photo bombs in the background with his tongue sticking out.]

And this week they were back to school after careful consideration given the removal of masking in Ontario schools and public places today. I did an interview with CBC Ottawa Morning today to talk about the unique position that immuno-compromised families like ours are in with this change. They also published a print article about it here. Tomorrow I'm doing another interview. Not trying to stop anyone from living their mask free life, simply raising awareness of what it's like for immuno-compromised families and why people need to be humane and kind and respect that not everyone is in a situation where they can simply get on with maskless life and accept the risk of COVID.

We will continue to wear our masks and mitigate our risks for the next few weeks as we wait for Ollie's third vaccine to become effective and to see what happens with COVID cases and the Ottawa Wastewater Meter to determine when it may be safe enough for our family to remove our masks, too. If cases rise suddenly like they did with the first Omicron variant (reports of hundreds of thousands of kids in England having the new variant and it multiplying three-fold in two weeks are just now coming out) we may be forced again to isolate, but we sincerely hope that this time the modelling gets it right and it will not be as bad as the first Omicron wave was.

[Photo description: Ollie kneels in the kitchen floor to give Hope a hug.]

In the meantime, please take care of yourselves, get boosted and get your kids their shots if they are eligible and not yet fully vaccinated. Ollie has now had 19 vaccines over the past year (3 COVID since December and 16 other childhood re-vaccines since February 2021). We can honestly tell you that science works and your children are more likely to avoid serious illness and death when vaccinated. I promise you that you never want to be in the position where you are sitting at your seriously ill child's bedside praying for their survival and wishing you'd done more to keep them well.

To those still masking to protect families like ours, I am as always so grateful for all that you do to help us keep our Ollie safe and well. To everyone, please be well and stay safe.

Abby's Point of View

On December 3, 2020, Abby's Point of View piece was published by CBC News Ottawa on their website and on social media. She'd been asked to do this piece back in August when we were still in Toronto for Ollie' s stem cell transplant and one of the producers saw the blog post that she wrote at that time sharing how she was feeling about Ollie and COVID. 

She's always wanted to be a writer and writes profound, insightful pieces for one so young. She was thrilled to be asked to do this and even more thrilled later to find out she'd be paid for her piece, so it was not only her first published work, but also her first paycheck ever, too. Stem cell donor, advocate, writer and breadwinner at 12 years old!

The letter that she wrote was accompanied by a video of her reading the letter and photos of our journey to get Ollie well. She worked on the letter for months with the editor/producer and the videographer spent a lot of extra time working on making the video as beautiful and moving as her letter. 

To-date it has been posted on CBC Ottawa's Instagram, Facebook and Twitter accounts, CBC Kids News and was featured in the CBC National News that night, too! Overall it was a tremendous experience for her, although the outpouring of response has been overwhelmingly emotional for her.

Our Member of Parliament and Minister of Infrastructure and Communities shared it and sent Abby a message...

And of course, Alex Munter who is the President and CEO of CHEO shared it, too! 

And Canadian Blood Services shared it to promote stem cell donation, of course!

She got messages from the Prime Minister's staff, Ministers and Members of Parliament, doctors, lawyers, teachers, nurses, authors, national and local journalists and media personalities and so many others across Canada! Family and friends from across the country were so excited to see her on the National!

We are so incredibly proud of her and her bravery in not only giving Ollie stem cells, but also for sharing her donation story with Canada and using it to highlight the importance of masking up and protecting those that are most vulnerable right now.

P.S. - Ollie is still doing great and we'll share an update on him again soon!

The Pain of Empathy

I just read a tweet from Canadian Blood Services about a young boy named Cameron who was a frequent recipient of blood transfusions and whom they featured on their web site last fall. He was 8 years old and just died of brain cancer. I don't know this family, but I am shattered by their loss. 

Empathy is something I've generally considered to be a beautiful, important human ability. I have always considered myself to be an empathetic person and have always been glad to see it in my children as well. On the positive side it enables you to connect with and feel deeply for others...to put yourself in their shoes and try to understand how they feel and what they're going through. On the negative side when you're an empath and read a simple tweet like this, it stabs you in the heart. You feel so genuinely and deeply for others and wish desperately to take away their pain because if it hurts you this bad you can hardly imagine what their real pain feels like. 

I would have felt like this even before Ollie's cancer, but now every story I read like this leaves me aching for these families. It makes me want to rage at the injustice that these beautiful little innocents are dealt. It sometimes makes my faith in God and his abilities a bit shakier. 

I'll be okay tomorrow, but for this moment I am letting myself grieve for this angel I never knew. It is necessary to let the emotion out. Most days I'm great. People ask me how am I "really" doing and most days I am really okay. I am focused and my glass is half full. But some days it just hits you in unexpected waves of emotion. 

For example, this weekend while taking a short drive with Mario and Ollie to do a curbside pickup. I was sitting in the back with Ollie and he was really happy. Singing along with his favorite songs on his playlist. All songs about strength, fighting, not giving up and there he sat battling lymphoma, blind and just happily singing his little heart out about how he still has fight left in him. I got a lump in my throat and tears poured while I tried not to sob and ruin his great mood. 

It happens to Mario, too. We look at each other and have to quickly look away for fear of scaring the kids. They've seen us tear up, but sobbing we do only when they're not going to see it because we don't want them to think we don't believe we'll beat this. We will. We just have perfectly normal moments of agony and need to let them out.

For those of you who are empaths, too. We are sorry to cause you pain, but are so thankful that you are in this with us.

Fortunately, Ollie has generally been happier lately, and desperately wants to see friends his own age after seeing almost none for the last 6 months. His neutrophils and all of his blood counts are still high despite radiation, yet we know that his mental health has suffered greatly from the necessary isolation that kept him from getting sicker. 

Since we know we need to keep him motivated to get through this part and eventually a stem cell transplant, we decided to allow a couple of visits with friends he asked for whose families we know are being diligent about social distancing, hand washing and wearing masks in public.

We were grateful to dear friend Jamie (who is and manages a team of respiratory therapists at CHEO and has many times come by when we were admitted before COVID-19 for hugs or to drop food for us) and her teenage son Jaden who came by Saturday for a deck visit. It was so lovely to finally catch up with her after almost two months in Toronto and Ollie loved having a big kid pay attention to him. Their family understands very well the need to be careful since Jamie is potentially exposed every day. 

We also had a couple of visits with some of Ollie's closest friends from school (with whom we are also friends with their parents). We explained to these parents that while we are pretty confident we do not have COVID-19 (Ollie had 3 negative tests at Sick Kids because they did one each time he was admitted or in the ER), we are at the hospital daily, so we may be more of a risk to them then they are to us right now. They both showed incredible concern to keep Ollie and us safe. We agreed to deck visits with masks and hand sanitizing and minimizing touch, recognizing that Ollie desperately wanted to play Beyblades with them, too. So one day we welcomed mom Sarah, Olivia (from his class, daycare and soccer team) and Charlie. The other we were happy to have mom Sarah and friend, classmate and daycare buddy James. 

I didn't take many pics because I was just enjoying seeing him interact with peers for the first time in so long. He was so happy afterwards that despite the slight risk to everyone, I felt it was the right thing to do. How can we torture this boy with treatments and tests constantly and there not be any short-term rewards or reminders of why he wants to get well again?!

That said, with things slowly opening up again and given not everyone is choosing to wear masks and maintain that 2 metres of social distance, we know we'll have to go back to being isolated soon as the risk for cross contamination becomes greater. People will start to see other friends and family, too and each interaction multiplies our potential for risk. Plus, when he's back in remission, we plan to go back to Sick Kids for a stem cell transplant to finally give him Abby's beautiful stem cells and that will mean more months of complete isolation.

Today radiation was harder because we had appointments at CHEO with Dr. Pinto and in the Ottawa Cancer Centre's radiation clinic with Dr. Chang before his radiation session, and that agitated him. We had to stop the radiation treatment a couple of times to calm Ollie. But, we've done 6 now, so tomorrow we tip into the second half! 

A CT is now planned for Friday morning before radiation. This will confirm if the drugs and treatments are working or not. On the one hand I'm not looking forward to the stress of it and getting him to drink the orange contrast drink. On the other I am desperate to know if this in combination with his Lorlatinib is really working. Either way, we'd continue with this treatment until radiation is done next week, but it would be such a motivator to know for sure that it's all really working instead of just being hopeful and thinking that I only see improvement because we so desperately want it. 

As of today it's been exactly 182 days or 6 months since Ollie was diagnosed. Originally his treatments were going to take 6-8 months. I thought by summer he'd be well and we'd take an amazing trip somewhere as a family to celebrate. Now we may have that much more time ahead of us on his journey to get well and then some. He's being granted a wish from the Make A Wish Canada Foundation, but he's chosen a trip to Atlantis Bahamas because he loves waterslides and wants to swim with dolphins. Sadly because of COVID it might be years before we can take this trip (thankfully they give you until your 18th birthday!). 

So rather than stress about the CT (I've already had a tight neck and headache off and on for 4 days over the radiation) I'm going to let go and let God.  I have learned that obsessing about any of this does not help us to control it or feel better about it. That He is the only one who knows the real plan or outcome of any of this. So I am asking Him constantly and believing that He will gift us what we are asking for. That Ollie will survive and thrive after all of this.