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.

Sandy Hook Acts of Kindness and Christmas Spirit

December 14th, 2020 was the eighth anniversary of the devastating shooting at Sandy Hook Elementary School in Newtown, Connecticut. Each year since the tragedy I have held my babies tight on the anniversary and thought of those 26 families who lost their loved ones senselessly in a heartbeat. I pray for the families of the 20 little angels who never came home from school that day in 2012. Ollie was just 6 months old when that happened and Abby was 4 and a half and in her first year of school. I remember being decimated by it and crying while imagining the horror of losing my child. Mario made me turn off the news because I felt it so acutely.

Last year we had just gotten home a few days before the anniversary after round 1 of chemo. It was the first time in my life that I had a tiny inkling of what real torture it is for parents to grapple with their child's mortality (little did I know how close we'd come to losing Ollie in the months after). After the anniversary last year we were only home a few days before Ollie landed back in CHEO with his first of several infections due to low neutrophils. And as scary as it was, I just remember thinking that even with cancer and infections, at least I still had my child to hug. And we were lucky enough to make it back home again on December 23rd to be home for Christmas and then back in for round 2 on New Year's Eve last year. 

If you are feeling sad about not seeing your loved ones due to COVID-19 this Christmas, please try to remember that other families that are fighting serious illness this holiday season would happily trade places with you in a heartbeat and wish that COVID-19 was the only thing making their lives more challenging. We are thinking in particular of all cancer and bone marrow transplant families battling right now and those that have lost a loved one this year and sending them all prayers and strength to get through this holiday period. 

Earlier this year after Ollie got lymphoma in his brain and went blind, we began receiving messages of hope and thoughtful gifts from Louise from Brampton. Louise does 26 random acts of kindness each year in honour of all those lost in the Sandy Hook tragedy. She chose to send hope to Ollie and Abby this year and this has meant so much to us. Recently the kids received a Christmas package from her, complete with letters from Santa lauding their bravery and kindness this year in spite of the difficulties they've faced. It couldn't have come at a better time as it finally seemed to pull the kids out of their Bah Humbugs and pushed them into their Christmas cheer! Thanks, Louise! 

So Christmas spirit is here, albeit with a bit less excitement than past years, but we finally got the kids to help us decorate the tree.

Ollie got to add the star this year and that moment felt pretty special to all of us.

Christmas carols are being spontaneously sung, we've had some Christmas dance-offs and started watching Christmas movies. Ollie even wrapped most of my gifts this year (although despite his blindness, I still didn't have him wrap his own gifts as he's super smart and can figure most gifts out by their feel and sound!)!

Snuggling while watching Christmas movies!

He's also done some Christmas activities with his vision itinerant teacher, like making a snowman out of baking soda and hair conditioner!

And Christmas always requires funny hats...

The Epic Playroom is coming along...the kids have now dubbed it the "Clubhouse" and Make A Wish of Eastern Ontario will be helping us out to make Ollie's accessible space truly epic! More to come on that, but for now, here's a box that one of the new additions came in...

This cracked us up...

But Ollie being a typical kid insisted we keep the box and make a fort...we're now convinced we should have saved some money and instead of the Epic Playroom and just bought him a box!

The box now dominates the living room and Chewbacca has also decided to hang out in it when Ollie vacates it! 

Barely enough room for Ollie to do his karate power breathing with Daddy with the box in there!

So that's how things have been rolling here. Medically Ollie remains very well, now only going to CHEO every two weeks for bloodwork and checkups. He did give us a big scare recently when he carried a big present up the stairs on his own (after I told him not to!) and when he got to the top, misjudged his footing and tumbled down seven stairs to the landing! I heard the fall from the kitchen and went running up with my heart in my throat! Mario had been in the bathroom upstairs and cane running out as did Abby from her room. Ollie jumped up immediately and said, "I'm okay!!!" Thankfully I'm usually good in a crisis and a trained first aider at work so I remained calm while checking him out all over. Despite some bumps and bruises he always okay and swore nothing hurt. 

Mario and I were both immediately concerned about his bones and especially his hip given his reduction in bone density (he's having an MRI this week on his hip). Mario was also afraid and started getting mad at Ollie given his fear. Then Ollie started crying because daddy was mad at him. At this point I told Mario anger wouldn't help and I knew he was afraid and then I started crying and shaking. I sat on the step and started trying to do some deep breathing to calm myself and let the shock go (my therapist says my body's reaction to the stress was perfect and it shows I'm trying to let the fear go versus holding on to those feelings). Abby tried to hug me to calm me down (and herself, too). 

Ollie had stormed off to his room by then, which was a positive sign that he was physically well enough to stomp off. Mario and I went and laid with him in his bed while Abby sat on the floor nearby and we calmed him and told him that our reactions were because of our fear of him getting hurt. We assured him that we knew he was strong enough and big enough to carry things up the stairs and no one doubted his ability, but that with the reduced bone density, he couldn't take these risks yet until we were certain his bones could take a tumble! We told him that we didn't want to see him end up in hospital with a broken hip or worse. He calmed down, apologized for not listening to me and we all went to bed. At Ollie's CHEO appointment today, his doctors joked that this was not the way they recommended testing bones, but it is clear that his are still very strong and he was okay. 

Aside from this he continues to have some swelling in his eyes and it gives him the odd small headache which they believe is persistent dry eyes from all of the radiation and the optic nerve continuing to heal what's left of the inflammation, so he we'll go back to using the artificial tears for a bit. There's a natural tendency to stress that it might be lymphoma in there again, but as we discussed with his doctors today, his severe eye pain and brutal headaches came on fast when he was relapsing and his energy level was nil. Given Ollie was dancing during his appointment today and he's constantly in motion with his increased energy stores these days, it seems highly unlikely that the lymphoma is back. I am once again comforted by our decision to continue him on the Lorlatinib (his cancer is Anaplastic Large Cell Lymphoma ALK Positive and this is an ALK inhibitor that targets and blasts any cancerous cells that may try to reproduce) post transplant and remain grateful to Pfizer for providing it to us under compassionate grounds. 

Forever changed or scarred?

I didn't want to steal Ollie's thunder with a post the same day as his and as usual his words were fewer,  but more powerful than any of mine could be.

Nevertheless, I want to share some thoughts and observations to mark one year since Ollie was diagnosed with Anaplastic Large Cell Lymphoma ALK Positive. 

I didn't sleep much last night. I kept thinking about last year on the same night. We'd been to CHEO the morning of the 18th for a one week post-op follow up after his biopsy. Dr. McCormick the pediatric specialist that we'd been seeing in the Ear, Nose and Throat Clinic that we'd been seeing to that point. She was very apologetic that she didn't have results yet and said she was pushing for them. She told us if she called us and told us it was just the relative of Tuberculosis they suspected it was, we'd just keep taking the medicine Ollie had already been started on. If it was more complicated she'd ask us to come in to meet. 

By the time we got home from CHEO on November 18, 2019 her office had called and asked us to be there the next morning at 7:30 before her first surgery. We knew this was bad news.

After a year, every moment of that day remains vivid in my mind. You'd think I'd try to repress it, but given I've always been the type to deal with hard things head on and try to learn from them, I guess it is natural that I'd remember. And I guess you'll always be able to recall the day that your whole life and outlook changes, and when your priorities truly crystallize.

I remember being very scared at first and then numb as we waited the two hours to see the oncology team. So much information came at us and overwhelmed us, despite the doctors speaking slowly and kindly and giving us opportunities to ask questions. I remember my main moment of being choked up came when they were talking to us about the possible side effects of chemotherapy. 

They told us he may be infertile and never have children of his own. My eyes welled up with tears as I struggled with that. Mario being a man didn't really get it and reminded me, "But he'll be alive!". I told him I knew that, but as his mama I was imagining him falling in love one day and having to tell his partner that he may never be able to have a child of his own with them. That he may never have the overwhelming joy of welcoming his own baby into the world at the moment of their birth. That his love may reject him as a life partner one day because of this. 

The doctor was a mama and in fact was pregnant with her second as she sat there with tears in her eyes and firmly told me, "If he wants to be a father when the time comes, he will be. There are other ways." 

Later that day I picked Abby up from school and told her about her brother. One of the many hard moments of the past year. In her despair when I told her she sobbed, "But I don't even have a spare! He's the only one I've got!" I assured her that while I had multiple "spare" siblings if that had happened to any of mine, the fact that I had backups wouldn't have made it easier. Coincidentally later that evening when she'd calmed down and we could tell her what treatment and next steps would look like, one of the first things she asked was whether he'd still be able to have children. She wanted to know if he'd be a daddy and if she'd ever be an auntie. Like mama, like daughter. 

I feel like I have an emotional hangover today. I've gotten that a lot over the past year. 

Abby's sad today thinking about all that's happened in the past year and how much her own friends got her through when she was most sad or afraid. She's wishing today that she could be with them and hugging them for all of the emotional support they gave her. But instead we're home avoiding COVID-19. What a year.

We talk a lot about the beauty of adoption now. Without saying so, we're prepping Ollie for the long road. After chemo and radiation it's highly unlikely that he'll ever have his own genetic child, but then again, I'm on various Facebook groups for caregivers and survivors of cancer and bone marrow transplants and I'm often shocked by the stories of those just like Ollie who miraculously went on to have them. If Ollie's taught us anything this year, it's not to count him out or assume he'll be typical. Always atypical. 

A year ago they told us it would likely be 6-8 months of treatment with 6 rounds of chemo. I stupidly thought we could plan for the 6 rounds of chemo and 8 months worst case scenario. That if that's what we expected, anything better than that was a bonus. Now even after a year when he's been through so much and still rang the bell a couple of weeks before the year was over, I think we were lucky. Because now I know and understand how bad it can get and that it can get even worse than we had it. And Ollie had it bad and things didn't look good for a while.

Still others we have met this year have fought for years to get their child well. And some fought and went home forever without their babies. I am forever changed by the bravery and resilience I have witnessed in all of these families. 

Cancer is so far reaching it honestly breaks my heart in two sometimes. I spoke with someone today I've gotten to know a bit who's helping with Ollie's various needs and she confided that it's personal for her to help him because she lost her young husband a decade ago when he fought it. And I saw our friend and former neighbour at the pharmacy while picking up meds today. As a teen they lived next door with their mama when we first moved here. The mama passed a few years ago from cancer, but they always ask about Ollie and reminded me today that the ache of losing someone you love to cancer never really goes away. It just becomes your new normal after cancer. 

With the help of CHEO staff and to honour Ollie's journey and this anniversary, we did a little thing at CHEO where we sent some treats and a message of hope to 4 North. It's a little way that we are paying your love and support from this journey forward. I'd just like to thank Jenn at Sew Happy Masks for helping us do an homage to Llama Llama Blue Pajamas and to her cousin Natalie for the CHEO cookies, as well as Ray and the team at Gabriel Pizza for feeding the staff and sending some Ollie's Pizza love for all families currently admitted in oncology. Ollie got to be the tester of all goodies. LOL

Thankfully after a year of hell, our boy was blessed with survival and aside from a bit of an off day today, he's doing great. He still has a long road ahead. Next week a respiratory test and in a few weeks another MRI, specifically in his hip where he has reduced bone density from treatments and prolonged use of high dose steroids. His whole life from now on he'll always be followed for side effects of his treatments and possible relapse or secondary cancers. 

It's this that keeps me from feeling completely happy and victorious. Will we ever be completely happy and carefree again with this always looming in the background?! Unlikely, but we're sure going to try. Ollie's happily ever after depends on it. He says he is the same even blind, but he's not the same post-cancer. He's a more cautious, thoughtful, less carefree and fearless boy than he was a year ago. We're all forever changed. How could we not be?! 

I know many of you have also told me his journey has changed you in some positive way or that he's inspired you. That's what has made it all bearable...that he has helped others, even as he suffered things a child should never have to. And that you hung in there with us a whole year, even when we know it was sometimes hard to read about our agony. Our adopted family motto extends to all of you, "We fight as one!" and now we all have to fight to be happy, despite cancer, COVID-19 or anything else threatening our happiness. It's too precious to give up easily.

I'm not done blogging yet. I feel that so little is shared about the post-treatment period and yet, so far from a mental health perspective, so much happens in it. Maybe I won't be able to stop blogging until I write that book so many of you are telling me to write...either way, Thanks for sticking with us. Big love to all of you!

One Year Reflection by Ollie

Today is my one year anniversary of my diagnosis. I'm feeling kind of stressed today. 

I got frustrated, mad and sad trying to do my schoolwork today that felt too hard. And then I cried a little and it was okay. The crying sometimes makes things feel better.

I loved getting new Beyblades this year. They helped me get through all of the needles and scary stuff. The hardest part of the past year was really needles and dressing changes.

I don't feel scared anymore when I have to go to CHEO. This is because I learned to take deep breaths and calm myself down when I get needles. 

I'm okay with my blindness now. It made me feel scared and mad at first that I couldn't see. I just decided to accept that I'm going to be blind. I'm still the same even though I'm blind. So far there's not really anything I can't do.

I want to say thank you to everybody who got me through this. Thanks for all of your help and kindness. And thank you for all of the gifts.

Cancer's ass has been kicked (this is the one bad word my dad let me use this year)!

(Note from Dawn that this is a transcript of exactly what Ollie told me he wanted to say.)

Racing Lives, Hearts and Go Karts

Our family always seemed to be racing somewhere before cancer. As much as we tried to keep things manageable in terms of work, school, lessons and daily activities, I never felt like we had enough time to just be. To be together, be happy, be mindful, be present. I think COVID-19 has made a lot of families realize that their insane day to day pace was not the greatest for their family. We started learning this about a year ago as the kids were going back to school, we were working (I was actually in full time French class for work) and we were trying to figure out what that darn bump on Ollie's neck was. The stress of it all was unbearable. 

You'd think I'd feel more stressed now after my son had cancer for the last year and almost died, but honestly I was more stressed then, knowing something was wrong and feeling like there was never enough time to figure it out quickly and work our life around it. Soon it became our life and everything else was unimportant. We worked the rest of our life around our family and around cancer. Furthermore, COVID-19 took away the need and really the desire to race anywhere. 

I've been thinking about this because we took Ollie Go Karting last weekend. We wanted to show Ollie that despite COVID-19 and him being immuno-compromised, we can still have (safe) fun. We called ahead to the Centennial Mini-Indy to verify how busy it was and ensure we could get a side by side racer so that our blind Mario Andretti could really feel that he was in the driver's seat and not just a little kid riding with their parent. The staff there were amazing and so kind. They accommodated Ollie's every need from extra care to sanitize things to more time to get in and out of the kart. We used a ton of surface and hand sanitizer and we were off to the races! 

I was behind the boys and was able to watch Ollie spinning that wheel like his life depended on it. When I got close I heard Mario yelling, "LEFT! LEFT! RIGHT! STRAIGHT!" at each bend in the road while Ollie either yelled that his dad was horrible at giving directions or just laughed out loud. At one point I slowed right down to take a picture of them and to wipe my eyes, because I was so happy to see him just being a normal kid that my eyes were leaking. 😭

 

The adrenaline of it was a great release for all of us and a reminder of how many bends and bumps in the road we've had, but gotten around. It also brought to mind the rat race that was our life before cancer. I recalled how the constant adrenaline of running around pre-cancer felt, how the adrenaline from fear during cancer felt and the incredible contrast of our very calm life now as we simply live and heal. I think the only race I want to be in from now on, though, is on the Go Kart track.

Ollie has been wanting to play a lot and frankly, it's not something I'm always great at unless we're at an amusement park, so I brought in some help with games like "Don't Step In It". This is a great equalizer for Ollie because you wear a blindfold (or Dad and I did since he's already blind) and try not to step in poop-shaped playdough. So we're all blind and it has poop in it. Every 8-year old boy's idea of fun! 

We also bought a Hot Wheels track where you launch cars and try to jump them into a scale at the end. Ollie is highly competitive and loves stuff like this. It also gets him down on the floor and moving his body up and down with his own strength, which he couldn't do for the 5 months before transplant!

We've finally got his sleep back on track! Not allowing him to have long naps during the day (1-2 hours max if he needs it, but often he doesn't anymore!) has helped him to be tired by or before his 9 pm meds. He's then sleeping through the night and waking about 7 or 8 am! This has made a world of difference for all of us. He still loves us to make an "Ollie sandwich" when he's falling sleep, though! 😄

He's doing amazingly well. So sometimes it feels wrong. How can things be going so well for us when the past year has so often gone wrong and atypically?! Unfortunately because you've come to expect it and are likely suffering from post traumatic stress disorder (PTSD), you're still on high alert for trouble, even though you are constantly trying to convince yourself to calm down and not overreact. 

For example, two weeks ago before Abby left for Ottawa, she pointed out what looked like a mosquito bite or a pimple on the back of his head. This is exactly how Ollie's bump on his neck that turned out to be Anaplastic Large Cell Lymphoma began. I reassured her that it was only a pimple and tried to forget about it, but my eyes and my hand have been constantly drawn to it, wondering, worrying. Last weekend it suddenly looked bigger and very red. I panicked and consulted my expert ALCL mama friends. They tried to reassure me that it was likely nothing, but both told me to contact the doctor to ease my mind. I talked to Mario about it and stressed him out, too. I sent a message to the bone marrow transplant doctors, asking for a scan this week to rule out it. The doctor promised we'd talk about it on Tuesday at Ollie's check in. I prayed so hard again. Please don't let the lymphoma be back!! By Tuesday it was reduced and almost gone. Just a pimple as his hair is growing back and sometimes clogging follicles.

 He's also had some eye irritation and sometimes pain in the past few days. It would be very easy to leap to the conclusion that he had lymphoma in his brain again given we've seen this twice already, but when we calmed Ollie down and tried flushing his eye out, we realized his eyelashes (that fell out after radiation and chemo pre-transplant) are growing back in and their stubbiness is poking his eyeball and irritating it. 

He's also had a loose tooth for weeks, but in hospital post-transplant they told him not to play with it as they were worried with his platelets low that if he pulled it out it wouldn't clot easily and he could have a hard time stopping the bleeding. So he left it, but it was becoming really annoying to him. On the weekend he decided to play with it and kept asking if he could pull it out. Even though his platelets and blood counts are way up and actually normal, we didn't know what would happen if he did pull it out. He kept pushing it with his tongue and finally popped it right out. A bit of gauze in his mouth for a few minutes showed only a very tiny amount of blood and it clotted in mere minutes. Normal. Not cause for alarm or stress at all.

We have to take every little thing seriously, without overreacting, but I am struggling to balance my emotional reaction with my rationality sometimes. So I'm going to see a psychologist virtually to help me deal with what I suspect is PTSD. There's no shame in it because I have proven how strong I am over the last year to myself and now I need to make sure I've worked through all of it so I can keep moving forward without a constant sense of fear, dread or escalated alarm. As I told Mario and Ollie when we went Go Karting and told Abby every time we went out somewhere in Toronto, we have to LIVE. We've fought so hard to save his life and now we all have to enjoy living life together.

Ollie wants to live. He's interested in doing and trying everything. He's finding new skills and strengths (he can balance almost anything on his head! 😄).

He asked for a chess set and I ran around downtown Toronto trying to find one on Labour Day. He played against Daddy, telling me where to move after we told him where Daddy's pieces were and where his were. It was amazing to see what he could picture and keep in his head. He really shocks me daily. How does a kid who's had 19 sessions of radiation and 6 rounds of chemo remember anything?! You hear of chemo brain and there are moments when he needs short term information repeated, but most of the time he is still sharp as a tack.

Mario also finally acknowledged that his COVID hair had to follow the former COVID beard. Ollie wanted to help. We forgot to bring the clipper guides, though, so Mario really got his money's worth on this one! 😄

Now they can both balance and stick things on their heads! 😜

Ollie is his usual silly self now. Wanting to retry everything. Constant pranks. Laughing at the idea of wearing my glasses because he can't see anyways...

We're connecting with his virtual teacher and his Vision Itinerant teacher and he's getting ready to be a real student again. It'll be a tricky transition after very little formal instruction over the past year. As I told him, he's wicked smart.and can do it. 

We listened to the book, "Who Was Helen Keller?" on Audible and he grudgingly admitted she was pretty impressive and did so much with even greater challenges (in some ways) than he's had to deal with. He agreed that if Helen Keller could deal with being deaf AND blind, he can certainly learn blind.

On Tuesday (Day +50 post transplant) at our appointment at Sick Kids, we were delighted to see Dr. Bader who had been one of our many dedicated oncologists on 4 North at CHEO. He has a tremendous bedside manner and has always been so patient and kind with Ollie. He's doing a rotation at Sick Kids and was excited to see Ollie doing so well. 

His bone marrow transplant doctor, Dr. Ali came in and reassured me that medically Ollie is well and doing better than expected. There is no sign of Graft Versus Host Disease, he's fully engrafted with three chimerism tests of 100% and his counts remain high and normal now. I joked that Abby had said the night before his first chimerism test that her stem cells were likely overachievers. He laughed and said they certainly were and they'd rarely seen a half match transplant go this well. And then he said he'd talked to our CHEO team and they all agreed that there's no medical reason for us to stay longer and we could go home THIS WEEK!!! I was elated and scared all at the same time. 

They originally told us 6-8 weeks in hospital for transplant (we were 5) and at least a month nearby after transplant (it's been 2.5 weeks). Can we really be ready to go home?! We're uncharacteristically ahead...atypical again, but finally in the best way! We've all been pretty emotional over the last 24 hours.

So we're heading back to Ottawa this weekend! I was out running an errand yesterday and all of a sudden became overwhelmed with emotion. I started to sob and had to pull the car over. It's done, I kept thinking (not really, but this part I was so afraid would never happen has been a success add we got through it all). It's real. He's better every day. We kicked the lymphoma in the teeth just like we promised. As usual I get done the hard thing and break down after everything is okay.

On a last happy note and with her permission, I want to share my pride in Catherine Nava. As many of you know, the Navas are dear family friends who have been amazing to us throughout this journey. We got to know them through Francesca who has been one of Abby's dearest friends since Kindergarten. Catherine babysat for us in the past. We have known her for the past 7 years and watched her become an impressive and caring young woman. She's thinking about a career in nursing. She'd be incredible. Every single time Ollie asked her to come and see him in  hospital or at our house, she dropped everything and came. Her maturity (she's 17) and compassion in helping him throughout his battle have touched me deeply. 

Just when I thought I couldn't love and admire her more, she goes and gets registered to be on the stem cell donor registry because of Ollie and Abby!!! My eyes are leaking again! ❤ Please raise amazing humans like Catherine (kudos to her devoted parents). Our future is secure if there are more like her out there.

My heart is full. I am so very grateful to  God, everyone at Sick Kids, Toronto, and everyone who supported us in this part of the journey. Toronto definitely redeemed itself for us this second successful attempt at a stem cell transplant. We're sorry that COVID and our need to keep Ollie safe have kept us from being able to see dear friends who live here and have checked in regularly to offer assistance and support. Your willingness to help was enough and so appreciated. We'll come back for a great visit when COVID is gone for good. 

Watch out, Ottawa! We're coming back!