Appreciation, Vaccination and Integration

[Photo description: Ollie and Hope asleep in his bed while he hugs her.]

Throughout Ollie's cancer treatment, stem cell transplant and recovery period we have been loved and supported by so many. I've said this many times over the past year and a half and I never stop being overwhelmed by how many kindness have been sent our way. By the selfless acts and the humility with which people simply tried to do the right thing to help our family in whatever way they could when we were in need and to help us to keep Ollie as safe as possible throughout this period.

[Photo description: CHEO's signage last fall notifying visitors that it was flu season and of measures they'd put in place to keep patients safe.]

People took special care to prepare meals safely and only when they and their own families were well. I received several messages over his treatment from friends who were signed up to send meals that said someone in their family had a cold (pre-COVID) and they didn't want to risk passing it on to us so they either sent us an e-gift card to buy a meal for our family instead or brought it by later when they were all well again. 

[Photo description: A foil wrapped dish of Chicken Broccoli and Rice Casserole from one of Ollie's former kindergarten teachers with the message, "You've got this Ollie. Love Ms. Charron" with heating instructions.]

Some families who were helping us with nurturing and chauffeuring Abby checked in when they had illness at home to warn us that we'd have to reschedule or even went the extra mile and called another of our friends who were well to arrange to take Abby when they couldn't. The school would call us when there was an outbreak of anything they thought we should be aware of in case we wanted to keep Abby home for a few days to avoid potential exposure.

There were many gifts dropped off lovingly and carefully with notes or messages texted to us explaining how they had taken extra precautions to sanitize them for us before dropping off. Respectful drop offs happened regularly where they gave us space for safety even before COVID struck and we all needed to. I remember being in church in fall of 2019 and a mama I knew who had heard our diagnosis news came to me and hugged me apologetically. She said she knew she really shouldn't be putting me at risk by hugging me, but told me she knew this was likely the last hug we'd be able to have as treatment got under way because she was a cancer survivor (I hadn't known!) and knew what we'd need to do to keep him safe, too. 

[Photo description: Ollie in his hospital bed at CHEO just after COVID-19 began in Ottawa in March 2020. Dearest friends (family to us) Uncle Vic and Mackenzie play Beyblades with him while wearing masks to protect him (and this is long before masks were recommended).]

So many of our closest friends and family got flu shots over the past two flu seasons for OLLIE. Because they knew we might need their help and they couldn't risk passing a flu on to us when Ollie had low neutrophils from chemo and post transplant. Many of them wouldn't normally get a flu shot, but got it for us. They told us they knew they needed to be ready to help us and couldn't be anywhere near us if they got sick.

These are the most beautiful gestures of people caring for each other. Of people selflessly putting the needs of an immuno-compromised child before their own. Of realizing that they had the power to make things a little easier and a little less scary for us as we fought to save our child's life and began to fear all of the invisible bacteria and viruses that could potentially kill someone with a low functioning or non-existent immune system. These generous souls researched and educated themselves on how to help us. And it wasn't just people we knew. Many were friends of friends and some even perfect strangers in our neighborhood and our city who heard our story and were moved to help in some way.

[Photo description: Friend Alexa's Instagram post sharing that she had donated blood in BC in Ollie's honour.]

So many friends and family from afar have donated blood and tagged us in posts saying they were doing it for Ollie. Several incredible humanitarian friends got swabbed and are now on the international stem cell registry because they were moved by Ollie and Abby to try to help other families like ours who need matches to save their own children. And many many more have sent financial donations to us and to every single fundraiser we've supported for the various organizations that have helped us to survive it all.

Why am I reiterating so much of this now? Because the truth is we're always ALL OF US in this together and we're all connected whether or not we want to be or even realize it. This is true not just during cancer, nor just during COVID, but always. COVID has just made more people realize it and yet there are still some who continue to live their lives like they should do whatever they want, whenever they want, without concern for how it impacts others.

[Photo description: Dawn, Ollie and Mario wait at CHEO for caregiver COVID-19 vaccines.]

Last weekend Mario and I got our first Pfizer COVID-19 vaccinations at CHEO as part of the province's Phase 2 where caregivers of stem cell transplant recipients (they're vaccinating every recipient and/or their caregivers within 3 years of transplant) were finally eligible to get vaccinated. It was an emotional day and Ollie was with us to mark it, wishing he could get the vaccine too (he will as soon as it is approved for immuno-compromised children). As most parents would, we got it first and foremost to protect our little survivor. 

[Photo description: Dawn is given her first dose of Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

But the truth is that we would have done it for anyone else's child, too. Just as Mario was a Big Brother and I was a Big Sister for Big Brothers Big Sisters Ottawa to help other people's children. When we first volunteered we didn't know the children or families we'd be helping by volunteering to be mentors. We spent our time and money to help these children become strong and independent adults and I'll tell you it was totally worth it. I know that our not so Littles (both have families of their own now) and both of their moms read this blog. Any person who's volunteered to help someone else would attest to the fact that they felt that they got much more out of doing something good for others than they gave.  

[Photo description: Mario is given his first dose of Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

Getting back to the vaccine, I've watched this week as the AstraZeneca vaccine (that so many were fearful of due to reports of blood clots) was opened up to our peeps in the 40+ crowd and rejoiced in how friends and family have embraced this and went out in droves to find and get the jab wherever they could! Record numbers of fearless, altruistic people who just want us all to do the right thing and take care of each other and end this nightmare finally. Again, I got so many messages from so many of you sharing that you got it, knowing that each one makes my anxiety lessen a bit and increases my hope that Ollie and all of us can safely rejoin the world again soon. We love that so many of you think of us, but know that you are all worth protecting and so are your loved ones, too, so please keep getting vaccinated everyone! 

[Photo description: Ollie high fives Mario after getting the first dose of the Pfizer COVID-19 vaccine at CHEO during their caregivers' clinic.]

Before I sign off, I want to share a powerful and a shockingly familiar story with you. It's about a smiley, kind, smart, determined 13-year old boy named Mateo. I tell you this story and share his photos with permission from his amazing mama who shared them lovingly with me. 

In the summer of 2016 Mateo became very ill and doctors couldn't figure out what it was, so he was admitted to CHEO for a month and a half while they did countless tests to get a diagnosis. By October he had started to grow lumps on the side of his neck and a biopsy finally revealed that he had Anaplastic Large Cell Lymphoma. He also had Hemophagocytic Lymphohystiocytosis (HLH) which is a severe inflammatory syndrome and complicated his ALCL treatment significantly, making him higher risk. The ALCL had also spread to his spleen and lungs by the time he was diagnosed. 

[Photo description: Mateo before being diagnosed with Anaplastic Large Cell Lymphoma.]

Dr. Abbott (Ollie's doctor) was his oncologist and I'm told he adored her (as do we). He began with the standard ALCL treatment that involved 6 rounds of chemo and his disease shrunk on his scans after the first treatments. Suddenly during his treatment he relapsed with lymphoma in his brain and spine. He went blind in one eye. They gave him stronger chemo treatments to try to get him into remission, which made him very weak and sick. The doctors tried desperately to find clinical trials that he might qualify for, but his condition was quickly deteriorating and the timing to get into a trial was more than they had. He also had radiation, but it wasn't enough. They had been told that if he could get into remission he could get a stem cell transplant at Sick Kids Hospital because miraculously his brother was a perfect match. Sadly even the hard core chemo and radiation couldn't get him into remission. The boys begged for a chance at transplant and with no other options left, Sick Kids agreed, but it was very high risk. They both got baptised just before they went to Toronto for transplant. 

Mateo got his brother's beautiful and perfectly matched stem cells, but he was too sick. A week after his transplant he fell into a coma and wasn't expected to live more than a few hours, but ever the determined fighter, he hung on so they transferred him home to Ottawa where he passed five days later in June 2017. His family and friends have missed him every single day of the four years that he's been gone.

[Photo description: Mateo during treatment for Anaplastic Large Cell Lymphoma.]

I believe in the depths of my soul that Mateo and his unbelievably brave family taught our oncology team what they needed to know to save our Ollie. That Dr. Abbott knew how to treat his first relapse and to request the miracle drug Lorlatinib from Pfizer (developed and clinical trials done since Mateo passed) under compassionate grounds after Ollie relapsed the first time because she knew we'd likely need a plan C and had to be ready with it quickly. Thanks to this it was there and ready to access when we needed it and it saved his life.  Mateo helped to save my son. 

His mama and I are forever connected because of our sons. She wanted me to use her son's name proudly and tell this story because it keeps his memory alive and validates for us that every life is important and we're all connected in ways we cannot even imagine. That the sacrifices that we make daily help others and even when we are suffering, others will learn and gain from it. I can never repay her family for their sacrifice, but I will always speak of Mateo as the true hero that he was. 

[Photo description: Mateo at the beginning of cancer treatment at CHEO opens his shirt to reveal a Superman shirt underneath.]

So every one of you out there working through your own fear on the frontlines to keep us all safe, contributing to research, accepting risk for the greater good, taking care of each other, wearing masks, washing hands, staying home during lockdown and getting your COVID-19 vaccine is a helper and a hero in their own way. No one sets out to be a hero, but by doing the right thing they become one.

[Photo description: A clipart character connects dots on the floor with a pen.]

You have literally no idea right now how what is happening to you today impacts others around you and those that follow in your footsteps. Just like Mateo and his family had no idea that although they'd lose him to ALCL, he'd one day help to save Ollie and inspire us to keep helping others after us. I'm so glad that I learned about Mateo and was able to connect the dots between his sacrifice and my son's survival. Connect the dots and draw the  lines between you and others. Be brave and giving like Mateo. It may just save someone else's life down the road.

Faith In a Better Tomorrow

I have not been okay today. I knew it was coming and tried not to make a big deal of it or to let the memory of January 25th, 2020 increase my anxiety or sadness, but it was too much for my battered brain and heart to ignore.

This was the worst day of my entire life last year. Worse even than diagnosis day. On this day last year Ollie had gone blind, I was told he had relapsed in his brain and spine, had to tell Mario and Abby, heard that he'd need radiation and a stem cell transplant, and he was transferred to ICU to manage his incredible pain and blindness. 

How do you ever forget your seven year old crying that he felt he was dying and begging you to make the pain stop? How do you forget having to cause your husband and daughter incredible agony because you had to tell them that lymphoma was trying to take over your baby's brain? How do you unremember sitting in a room of doctors who told you that they had no idea why your son was blind, if he'd ever recover any of his vision or if their treatment would definitely get him into remission for the stem cell transplant he'd now need?

I'll never be able to unfeel any of the fear, anxiety or sorrow that I felt on this day or throughout this week last year. I've never been so afraid in all of my life. Diagnosis was scary, but also a relief as we finally knew what it was and had a plan of attack. We were told it was a very treatable form of lymphoma and the ALCL 99 chemo protocol worked in about 75% of cases. Great odds we thought! 

Never did we imagine that he'd be in that dreaded 25% for whom it wouldn't work with the basic 6 rounds of chemo. Relapse and blindness came out of nowhere and thumped us on our butts good. For a brief time I was really feeling desperate and uncertain that he'd make it. My faith had been strong, but felt shaky that week. When I think back to that week I am always, reminded of "Footprints in the Sand" whereby I now know Jesus was carrying me. In retrospect, God sent me help to bolster me and prop up my faith. He sent me incredible messages of love and support from so many people. He sent dear friends to feed and check on Mario and Abby while they were ill.

He also physically sent me: 

- Roisin and Rich with gifts and hugs from St. George on the very day we were moving to the Pediatric ICU and were so overwhelmed;

- Nurse Kim in the PICU to help us through the night he was having seizures that I thought might be a stroke and to insist the next night that I take a parent room to get some real sleep for the first time in over a week while she and another nurse stayed with Ollie non-stop;

- Maria and Toni to nurture me and give me emotional support and physical respite when Abby and Mario came down with strep throat the same week that Ollie was in ICU;

- Vic and Jenna to bring Ollie out of his pain-induced coma-like state to show me my boy was still in there;

- Nurse Maddie whom we loved from 4 North with us in the PICU during a floating shift to help us through some difficult procedures that week;

- Jamie who actually worked in PICU, but was not assigned to us came to see us during her shift every day we were in the PICU bringing fresh fruit, snacks and the best and most needed hugs.

And there were so many other Godwink moments that I now understand to be signs from God that He was with us in our worst moments. 

That week changed the trajectory of our lives forever in countless ways. Naturally the blindness after a full year has completely changed how we support and parent him, how we feel now about ability (not disability), and how we help him to navigate and view the world. But it also changed our family's genetic footprint and our appreciation of medicine and science. That was the week we all went to have our HLA matching done to see if any of us were a stem cell match for Ollie. It started our less than smooth path to stem cell transplant and in the end made us all believers in the powerful combination of faith, science and medicine. 

He had another chimerism test last week. It's the fourth since transplant 6 months ago and it's still 100% Abby's cells. His "Abby treatment" has been unbelievably successful after so much agony and fear. His oncologist says that they've rarely seen a transplant (especially a half match) go so well and they wish they could bottle Abby's cells for others. She does, too. 

It's like these monumental days are now etched into our DNA and sometimes even without knowing why, each of us has reactions to the memories (in my case consciously, in the case of Mario and the kids, subconsciously as they don't remember the dates like I do). Over the last few days each of us has had our moments of freak outs and melt downs that are seemingly unrelated, but I know that they are connected to last year. Whether I somehow give off some subliminal signs or secret code that we should all be remembering these milestones or my anxiety and sadness simply adds to their underlying and omni present similar feelings, I don't know. I do know it's hard and that as my therapist says, it's also necessary to remember and feel it all to work through it and get past it. 

Other cancer moms tell me you never forget, but it does get easier the farther you get away from cancer treatment. The thing is, you never get away from it. The long term effects will always be with us and as Ollie grows up we'll have other potential physical side effects to contend with. 

Today he had an ultrasound on the back of his neck. On the very day that last year his relapse was confirmed and he went blind. What kind of cruel irony keeps putting me at CHEO for tests on already difficult days? It can't be random. So it must be for a reason...maybe to remind me of how strong we are? To show us how far we've come? 

Maybe it's to give us better memories on these days going forward. Today we heard that there is no bump in the ultrasound and our radiologist and oncologist believe it's a simple knot in his muscle. We're going to keep an eye on it, just in case, but unlike that first ultrasound on his originally very visibly evident bump on his neck, they saw nothing to be concerned about. Still, the initial fear in Mario's eyes when we got home and Ollie started talking about the radiologist coming in to look at it himself made me want to weep or rage that this anxiety and the unknown will always torture us to some degree. Thankfully I was able to reassure him that the radiologist saw nothing and a call shortly after we got home from our oncologist confirming this was comforting. 

So we've had an emotionally exhausting day, but it's turned out so much better than this day last year, so we'll take that as a win. I'm not okay, but I am getting better slowly as I work through the last 15 months of fear and sorrow, one day at a time. January 25th, 2020 took a lot from us, but it didn't take our Ollie or our faith.

For those of you who tell me we remain in your prayers, thank you so much. Days like today are why we still need them and are grateful for them.