The Official End of Treatment

[Photo Description: A masked Ollie and Dawn pose on the first floor of CHEO under a street sign that reads, "Memory Lane".]

Yesterday was our last of three years post stem cell transplant regular oncology checkups and bloodwork at CHEO. How naive was I when I thought we'd be done with cancer in 8 months of treatment maximum?! 😆 It's been almost 4 years since we started at CHEO!

On October 22, 2019 we started our medical journey at CHEO when we arrived for our first tests, so today we took a little trip down memory lane. 

[Photo Description: Ollie, Micah, Isaiah and Theo sit in the lab waiting room talking and watching tablets.]

We started at the lab where we bumped into friends Paula and her boys Isaiah, Micah, and Theo who were also waiting for bloodwork. They were one of the many amazing families who helped during our battle. How fitting that we had a reminder of the army that helped us over the past 4 years.

Also fitting that while in the unusually long line waiting at the lab, CHEO's fearless leader, Alex Munter came along, said hi and set about trying to find out why the line up was not moving faster and updating us soon after. A simple example of the leadership at CHEO that has kept things moving for us even during the difficulties of the pandemic. In February 2020 Alex came to Ollie's hospital room after the story about his missing stuffed llama went viral. At that time Alex told Ollie if he needed anything to let him know. Needless to say, Ollie and I have taken him seriously and never been shy to ask for the things we think can make things easier for families like ours. In turn Alex has always considered every request or suggestion and done what he could to help. So in keeping with his action-oriented approach, he followed up tonight by email, asking our opinion on some other possibilities to make the lab easier and more efficient for families. How lucky are we to be able to influence even better care for CHEO families?!

[Photo Description: Ollie wears his CHEO shirt, shorts and a mask and poses in front of a mural of children playing in a tree with the word CHEO in a cloud above. Ollie is giving two thumbs up and holds his cane in the crook of his arm.]

After Alex left and we waited with our friends for a while, I did have to go into the lab reception area and advocate to be accelerated so that Ollie's bloodwork would make it into the courier by 2 pm to head to Germany for his final inclusion in Dr. Woessman's Anaplastic Large Cell Lymphoma relapse research and be tested one last time to determine if there is any Minimal Disseminated Disease (MDD). It has been negative (or clear) every single time we've done it the past few years. This has given me significant comfort in concert with his scans, even though the test is not yet widely used for lymphomas. 

They did accelerate us to make the courier and Ollie was a complete champ. We did it so quickly that we forgot to ask for the freezing spray that numbs his arm before the poke and he didn't even make a peep and only mentioned it after we were done, saying his arm was a little sore. From a boy at least 3 of us had to hold down 4 years ago as he kicked and screamed during pokes even with freezing spray, to this calm and capable of handling anything boy. What a transformation.

[Photo Description: A photo of posters in English and French found on the reception desk in the CHEO Medical Day Unit promoting the Patient and Family Advisory Council (PFAC) and Campfire Circle Family Picnic for oncology families. This is one of the many initiatives that the Oncology PFAC that I am a member of has organized to connect with and make cancer care easier for new families.]

On to oncology where we had a final checkup and they told me this was really it...that there would be a check in once a year, but no scanning unless there were symptoms and they were a phone call or an email away, but didn't need to see us again unless we really needed them. I admit I got teary and a little fear gripped my heart all of a sudden. I've felt somewhat this way each time we reached a new milestone where we'd reduce the frequency of visits, but this was really the last one. They consider him to be well and completely stable and no longer in need of them. After my panic and tears I used my best Kids Kicking Cancer Canada power breathing to help the panic pass. We gave big (masked) hugs to our post transplant clinic Nurse Julie who has taken amazing care of us the past two years, and helped me through more moments of panic than I could count simply by responding quickly and getting us access to whatever we needed to keep him well. She is one of the most responsive health care practitioners I've ever met and she has been such a blessing to us.

[Photo Description: Ollie eats a sub at the Oasis Cafe at CHEO]

From there we had one more of the likely hundreds of subs that we've eaten at the cafe. For whatever reason the food even tasted better today than it usually does.

[Photo Description: Ollie lies on the table and is connected to 13 wires for his routine EKG in cardiology.]

On to cardiology for EKG and Echocardiogram  and I laughed out loud remembering them trying to get Ollie's hospital bed down that corridor after relapsing in his brain. I did not imagine then ever being able to laugh about anything that happened to us during that awful time. Time and doing the emotional work really does heal wounds (as my therapist reminds me).

[Photo Description: Ollie lies on the table for his Echocardiogram as the technician's gloved hand can be seen using the probe during his test.]

Next we popped up to 4 North to say welcome back from mat leave and goodbye to our angel on earth, Dr. Abbott. Our other oncologist angel, Dr. Brianna Empringham is also on mat leave right now. After a short visit, big hugs with Dr. Abbot for Ollie and I. She marveled at how tall and lean Ollie was since she last saw him a year ago (he's lost 22 pounds since stopping the Lorlatinib a year ago and built a lot of muscle playing all of the sports he plays, plus he's still in the 97th percentile for height for his age). She told me I was a great hugger. I could hug her forever and never let go after all she's done for our family. LOL Grateful to have also seen a bunch of our incredible nurses, our favourite pharmacist and one of our child life specialists, too.  

We were too busy hugging our team in MDU and 4 North  to take pics! And as they all reminded us, we'll see them in October at the SIOP international oncology conference that CHEO is hosting and Ollie and I are speaking at on patient-centred care. I teased Dr. Abbott that they asked us because I was clearly not afraid to ask for what we needed. Dr. Abbott told me that I always asked in the nicest and most respectful, yet assertive way, and she thought I should be teaching a class to all little girls so that they'd all get what they needed as they grew up. As an outspoken person who has often been concerned that she is seen as too loud or brash, I was flattered that she saw me that way. She's done everything I asked and more for 4 years. Not once did she ever say no to any of my ideas or make me feel like I wasn't an equal partner in Ollie's care team. She always left us in good hands when she couldn't be with us and doesn't take any credit for her leadership in helping him to survive. She could ask virtually anything of me and I'd do it for her in a heartbeat, no questions asked. She thanked us for the visit, wished Ollie a good start to his school year next week and promised she'd see us in October at SIOP.

Next was the requisite visit to the gift shop. And for once my brave boy left empty handed because he already had all of the Lego sets that he wanted and couldn't rationalize me spending $8 on the world's tiniest harmonica that he'd admired. So he picked a CHEO shirt for daddy to match the one he himself already had and left happily. He's maturing so nicely and better understanding that while it's nice to have things, what matters most is having the best people in your life. 

We had one final stop before we could leave. Ollie indulged me and went along with going back to the CHEO playground we'd stumbled upon on our very first day at CHEO during testing before diagnosis on October 22, 2019. 

The playground is located behind the main building of CHEO, near the Children's Treatment Centre and Roger Neilson House. 

[Photo Description: A split photo. In the left is a photo of 7-year old Ollie hanging down headfirst and making a crazy face from the top of the playground slide at CHEO on his first day at CHEO for testing on October 22, 2019. The second image is of Ollie standing in front of the same slide with two thumbs up and holding his mobility cane on his last official day of oncology and post transplant treatment, August 28, 2023.] 

On that day almost 4 years ago we had zero idea of how much our lives were about to change nor how important CHEO and everyone who worked there would become to us. The 7-year old kid on the left of the photo above (who was not evidently sick or short of energy when diagnosed with stage 3 cancer) was ready to dive headfirst down the slide like the crazy brave kid he always was and used this bravery every one of the last 1,406 days since we started at CHEO. The courageous kid was more subdued this visit and opted to just pose in front of the playground instead of playing on it. A sign of his newfound maturity as he becomes a tween and is slowly moving away from what is left of his complicated childhood.

[Photo Description: A split photo. On the top is a selfie of Ollie and Dawn smiling while sitting on the wooden swing in the Little Garden on October 22, 2019. On the bottom is a photo a passerby took of Ollie and Dawn posing in the same garden beside the Celebration Bell on August 28, 2023.]

Finally, we reached our ultimate destination in CHEO's Little Garden located in the little forested area behind the playground. 

The bell was first rung by Hillary McKibbin to mark her remission of her Aplastic Anemia. Due to the threat of COVID and her being severely immuno-compromised, her family needed a bell that she could ring outside safely, so her incredible mama Kelly McKibbin built one and later donated it to CHEO so that ALL families could celebrate and mark milestones. 

[Photo Description: Ollie holds the string of the Celebration Bell in the CHEO Little Garden, readying to ring it to mark his last official day of oncology and post transplant treatment.]

I met Hillary's mom Kelly online just a few months before Ollie was diagnosed. I'd seen Hillary's story and plea for stem cell donors in the news and her story called out to me and touched me in ways I didn't understand then. I felt called to follow her journey and connect in empathy with her brave mama. Kelly and I had corresponded from time to time for months via Twitter private messages as I sent her encouragement and marveled at their bravery in telling their story so honestly and publicly. When Ollie was diagnosed, Kelly was actually among the first people that I told and we were both shocked that we were suddenly living such similar lives. I believe it was divine intervention that brought us together and we supported each other throughout the pandemic as we both put everything we were into getting our children well, keeping them safe, and encouraging others to donate blood products for kids like ours. 

[Photo Description: A photo of one of the gold plaques with black writing on the purple post of the bell that reads, "Celebration Bell: This community bell is for all families to enjoy. Ring it to commemorate a milestone, a recovery, or an achievement that brings you joy." The text is also translated into French and the CHEO Foundation logo is on the bottom.]

When we found the bell I read every word aloud to Ollie and got choked up as I read these words to him. Today we celebrated the milestone of being done our final of three years of regular oncology checkups, officially being off treatment, fully recovering from his cancer and stem cell transplant, and this was certainly an achievement that brought us joy. And we were marking the occasion on Hillary's bell. I couldn't imagine a more perfect way to end our last official day at CHEO.

We finally made good on our promise to our friend Hillary that we'd one day find her bell and ring it, too. So here we both are ringing the Celebration Bell. We rang the heck out of that bell (but don't worry it's still perfect and ready for many many more celebrations for other families!)!

[Photo Description: The commemorative plaque on the post of the bell that thanks all who contributed to the bell's creation.]

Now realistically, cancer survivors don't ever get to be done with their medical journey. While Ollie is officially done in oncology, he continues to be seen twice a year by endocrinology and his bone specialist for his hypothyroidism and osteopenia. He'll still visit opthamology and his retina specialist at least annually. As big things happen in his life and he transitions through different growth stages where he may be triggered by all that he's survived, we'll still see the social workers or child psychologists when needed. He has a pulmonary function test in September to ensure his lungs are still healthy. Still a lot, but so much less than our normal of the past 4 years. 

And I'm still on the Oncology Patient and Family Advisory Council (PFAC), a Family Leader for the CHEO Research Institute, and a member of the CHEO Inclusion, Diversity, Equity, and Accessibility (IDEA) Committee, so I'll still be part of the active CHEO family. And I'm still a Co-Lead of the Education and Training Matrix for the Canadian Pediatric Cancer Consortium, so am committed to continuing to help make things easier for families at all pediatric cancer centres across the country.

Ollie was randomly emotional yesterday, too. Maybe in part because he felt mine, but there were lots of extra hugs from him and requested by him throughout the day. One day he'll truly understand how his army wouldn't give up on him and saved his life multiple times. He is one of their many successes and miracles.

I feel sad AND happy, AND fearful AND hopeful about reaching this milestone and the ending of a huge part of our lives. We remain so grateful every day for the unbelievable people at CHEO who have helped us to survive so much. They truly treat the whole family and make you feel part of theirs. 

I think the Buddhist Proverb below sums up pretty well how I feel right now. Stay tuned to hear more as we get started on our next new beginning.

[Photo Description: A quote that reads, "In each loss there is a gain, as in every gain there is a loss, and with each ending comes a new beginning. - Buddhist Proverb"]

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.