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