The Brave Boy and Therapeutic Clowns at CHEO (plus Mario photobombing)

Saturday 17 July 2021

Precious Time-Wasting Wisely

Ollie has been begging to go on vacation pretty much since he got sick two years ago. In fact our last official vacation was this week two years ago at Mont Tremblant. So it seemed time to live a bit and enjoy the life we fought so hard to have these past two years.

Photo description: Mario, Ollie (who is wearing a dive mask), Abby (wearing goggles on her head and Dawn sit at a patio table having lunch outside of an outdoor pool.

On the same trip to Mont Tremblant two years ago we were blissfully unaware of the cancer that was about to turn our entire life upside down. 

Photo description: Dawn, Mario, Ollie and Abby take a selfie at the Mont Tremblant Mini Golf Gazebo in July 2019 just before Ollie's lymphoma bump appeared on his neck.

In the summer of 2019 we had arranged to be in Mont Tremblant at the same time as dear friends Maria, Sofia and Micheline. We had a blast running around the village with them for a few days playing laser tag, going down the luge ride, paddleboating and so much more. 

Photo description: Dawn, Sofia, Micheline, Maria and Abby in vests and holding laser guns at Mission Liberte Laser Tag in Mont Tremblant on July 2019.

I feel like this might have been the foreshadowing of how close we'd all become in the following months when we learned that Ollie was sick. Maria and Mich were among our first visitors in hospital and were a constant support over the past two years. 

In addition to everything else that they did, they had a particularly important role in bolstering my faith in God during this journey and reminding me that He was always with me and sending me incredible angels like them and so many others to help us. Sofia has also been a dear friend to Abby and Ollie throughout this journey.

Photo description: Ollie lies covered up in blankets on a radiation table at Princess Margaret Hospital readying for total body radiation before stem cell transplant with the radiation machine above him and green lasers focused on his body.

Last year at this time we had just arrived back in Toronto after getting Ollie back into remission. We were  preparing for transplant and Ollie was undergoing total body radiation at Princess Margaret Hospital/Sick Kids this same week before being admitted for chemo and then transplant. Incredible where we are versus where we've come from these past two years.

Getting back to this year, naturally we checked all COVID statistics and protocols before deciding to go to Mont Tremblant this week.  My friend Leila has been living with her husband and kids at their cottage there all winter to keep them safe from COVID and assured me that the area was still very quiet and there are zero active cases in this region and only 75 active cases in all of Quebec! Given this and the fact that the #TwoDoseSummer for Ontario COVID vaccines seems to be working (Abby got her second shot last week), we indulged Ollie and booked a week away. It's also an early celebration of his transplant anniversary coming next week. 

Photo description: Abby after getting her second COVID-19 vaccine at the Queensway Carleton Hospital Vaccine Clinic in June 2021.

Packing and getting ready for the vacation was somewhat reminiscent of our last trip, which was to Toronto for transplant. This made me feel anxious. Like we've been here before, but the uncertainty of what we'd be facing as far as risks and keeping Ollie well were enormous again, even though they're not in comparison. That's the crummy part about PTSD...any little trigger can make you feel the full weight of your past trauma and anxiety like it is happening again, even when it isn't. But I'm learning to handle it and do hard things anyways. Deep breaths, Dawn. 

Ollie's well. The oncologist cleared him to go on this trip and even to go back to school if COVID numbers remain low in the fall, so we're all going to be okay and the risk is low and worth taking for mental health in other ways. Thank goodness I saw my therapist at the beginning of last week! She helped to affirm all of this and to remind me that it's still okay that I feel how I feel and normal given our circumstances.

Photo description: Mario and Ollie play a magnetic go fish game while on vacation in Mont Tremblant on July 2021.

We arrived last Saturday evening after Ollie and Mario slept blissfully the entire way and Abby and I sang girl songs of empowerment from the playlist that we made before our big trip to Toronto in March to get her assessment for transplant done at Sick Kids. Sometimes I listen to songs on our playlists made to get through hard things and I feel euphoric, other times nostalgic and sometimes just weepy and overwhelmed with what has happened. Some may think or  have asked, "Why would she WANT to listen to/read/talk about anything from those difficult times?!" Honestly it's my way of processing. It seems to be Ollie's, too as he repeatedly asks to great his "Bye Bye Lymphoma" playlist. I sometimes still tear up at certain songs remembering hard moments when those songs were playing, but I have always been affected by music that way, too.

I have experience in my family of people having gone through trauma and pushing it away into the deep recesses of their minds and hearts. They never talk about it (others in the know whisper about those times, which is how I am aware of them) and pretend that it never happened. But it's clear that it affects them, their judgement and relationships every day of their lives. Ignoring it doesn't make the trauma any less stressful or crippling. In fact it can make other aspects of your life worse as you repress the trauma and anxiety. Often it's caused other personal issues like addictions, casting the entire family into a cycle that is very hard to break. After everything else cancer has taken from us these past two years I cannot let it permanently take my mental and emotional health nor my children's. So I'll keep taking about it and remembering (maybe a little less frequently publicly going forward if stability continues) to try to recover from it all and leave space in my mental health for wellness.

 Photo description: Mario, Ollie and Abby play in the pool in Mont Tremblant while Dawn takes a selfie from poolside in July 2021. 

The week away was lovely. There were far fewer people there than we imagined, COVID protocols were effective and followed and we generally felt safe while out for the first time in what seems like forever (remember that Ollie was sick 6 months before COVID hit). We spent most of the week walking, swimming and just resting. I even went out to buy groceries in person...first time I've done that in about 5 months as we still get everything delivered.

Photo description: Ollie and his friend James play air hockey in Mont Tremblant.

As a bonus, on the first day, we bumped into dear friend of Ollie's James from school and his family where we were staying! It was lovely to see them all and we got to have a couple of "playdates" with him before they left after their long weekend away. Since all activities including the Arcade had to be booked, were limited to few people and were cleaned in between, it was easy to limit our potential exposure to COVID.

Photo description: Ollie, Mario and Abby swim in the pool while Dawn takes a selfie of them all from the deck.

You had to book a one hour time slot at the pool and several days we were the only our almost the only ones there! Ollie was in his glory and we were able to finally give him something he's been begging to do for 20 months - swim in a public pool with no PICC (a central line he had in during treatment for blood draws and IV meds as needed)! We were all able to really get in and enjoy it because there was such low risk and even the few that were in the pool with us certain days were very respectful and kept their distance. 

We did do one interview with the incredibly kind Katherine Dines from Ottawa's Move 100 to talk about the upcoming blood donor clinic (see info later in this blog) in honour of Ollie's one year anniversary of his stem cell transplant and the #OlliesPizza that continues to be available from Gabriel Pizza in support of childhood cancer families through Candlelighters Ottawa. And our update piece with Canadian Blood Services for the transplant-iversary came out last week, too. We continue to be humbled by the interest in our story and the opportunities to promote awareness of childhood cancer and blood products donation.

Back to the vacation...at Ollie's request, he and I went up to the village one day to try to do something fun. Mario and Abby preferred to relax in our vacation home with Hope. So off we went to the village, taking the open gondola to the top to make it easier for Ollie not to have to walk all that way. Getting Ollie in the gondola while blind was a new experience, but he did it like a champ and I was grateful to the operators who had given me the signal that they had seen his white cane and were watching closely and prepared to press the stop button if we needed it. We didn't and Ollie and I were pretty proud of ourselves. I am constantly grateful for how his white cane creates awareness and accommodation when he needs it.

Photo description: Ollie and Dawn wear masks on the open gondola with wind in their hair while riding to the top of the Mont Tremblant village.

Ollie is like me and LOVES amusement rides and new adventures. So he was so joyful during that ride up. I described everything we were passing and while I still wished he could see it himself, I was grateful that he'd been before and had pictures in his head already about how beautiful it all is. 

When we got to the top, he wanted to try the luge. I had already called ahead to inform them that I was bringing my blind son and to see if we could ride together. They said we should check directly with the operator. Sadly, the staff there said we were too big to fit together. Grateful that I had prepared Ollie for this possibility, I assured him we'd find something else fun to do. 

Photo description: A Mont Tremblant staff member helps Ollie into a harness while sitting in a trampoline at the Eurobungy ride.

So off we went to the Eurobungy. Thankfully there were no lineups anywhere! A sure sign that things are not yet normal up there. 

I was nervous about him doing it with his blindness. He can get dizzy and nauseous almost like having vertigo at times as is normal for blind people who don't have the horizon  focus on to help with their centre of balance. I had thought ahead and brought his anti-nausea meds just in case (he hadn't taken any in months he's been so well). Also, I was a bit nervous about his back and hip. His bone density issues continue and while he generally feels little or no pain, I wasn't sure if this would hurt him. He just had bone density scans last week and I knew his hip was a bit better and his back a tiny bit worse. He sees the endocrinologist and the bone specialist on July 22, so hopefully we'll know more about next steps then. In the meantime I reminded myself that the risk is still low and that we got him well to let him live and I need to put aside my fears and desire to bubble wrap him now and just let him be a normal kid.

The young man who helped him into his harness had seen him come in with his white cane and understood immediately that he was blind and would need very clear verbal instructions and reassurance. He was so kind and gentle with Ollie, taking special care to keep him safe and to make it fun for him. I could have hugged him.  His name was Zach. Whoever his parents are should be so proud of what a kind and respectful man they have raised.

Ollie had a blast! It took him a few bounces to get the feel for it on his feet to know when to brace for them to hit the trampoline, but as in all things our brave warrior figured it out quickly and was soon laughing out loud in delight. I was in tears and was glad the sun was in my eyes so I could blame that instead of my emotions for once. Zach and I asked several times if he felt okay and he assured us he felt great. The timer went off and Zach (knowing how happy Ollie was and that there was no lineup of kids waiting for their turn behind him) says he didn't pay attention to timers and let Ollie bounce a bit longer. When it was done he gently helped Ollie out of his harness, told him how great he'd been at it and wished us a great day. He'd already made it perfect for us. 

Photo description: Ollie is strapped in a harness and bouncing in the air off of a trampoline while holding on to the bungy cords on each of his sides. The sky is very blue with fluffy white clouds and there is no line up for the ride.

Ollie was so thrilled with the whole experience and proud of himself. Once again he'd done something scary and difficult in his constant darkness and conquered it in every way. He felt like a "normal" kid. After that I offered him several other options, but he told me that had been enough excitement and he was ready to head back to our condo. 

Photo description: Ollie makes a move on his Tactile Chess Set on the table in front of him while playing with Mario on the sofa.

Photo description: CNIB Buddy Dog Hope looks at the beautiful lake and mountains behind her while Dawn crouches beside her and takes a selfie while on a walk in Mont Tremblant.

On the last day we went to our friend Leila's cottage (while she was in Ottawa with her kids swimming in our backyard to beat the heat!) to use her lake and boats. 

Photo description: Abby and Ollie sit in a yellow paddle boat on the water while Mario and Dawn prepare to push the boat out and get on. All are wearing life jackets.

It was a beautiful day and the kids were excited to get on the water. We paddled around for a while. Then Abby and Mario swam a bit while Ollie fished and I just enjoyed the serenity. Hope had already had a swim and settled down in the boat next to Ollie while he fished. He caught nothing, but was happy just to do it.

 Photo description: Mario and Abby stand in the water holding the paddle boat while Hope lies in the boat beside Ollie as he fishes.

Finally we enjoyed a picnic on Leila's back deck, at her suggestion used her facilities and tried out the electronic drums and headed back to our condo after a fun day. Many thanks to Leila and Adam for allowing us to use their home away from home.

 Photo description: Ollie sits at an electronic drum kit with drumsticks in his hands while wearing his hat backyards and sunglasses.

All in all, a great if quiet vacation (at least compared to our typical vacations of past) and much needed time to rest and start to slowly rejoin the world. We remain hopeful yet cautious as we watch and see what the fall will bring as far as COVID is concerned.

Before I wrap this up, just a reminder that we are doing a blood donor drive in Ollie and Abby's honour this week to celebrate Ollie one year anniversary of his stem cell transplant. 

To join our campaign, simply:

1. Register or sign in if you're already a donor and have an account.

2. Select "Partners" from the menu.

3. Search "Donate for Ollie & Abby".

4. Book an appointment to donate. If you can't make it between July 19th to 24th, it still counts, so make it in a few weeks or even months and still be counted!

If you prefer you can also call 1-888-2- DONATE and ask to be added to the "Donate to Ollie & Abby" campaign that week. 

If you can't donate, please share this with others who might.

 Photo description: A Canadian Blood Services (CBS) poster reading "Honour Abby's Be A Hero Day by donating blood" with a photo of a masked Abby standing in front of the CBS office sign near Sick Kids Hospital in Toronto days after Abby made her stem cell donation for Ollie in March 2020.

You will hear from me again soon as I planned a special post this week for the one year anniversary. Until then, enjoy every moment of your health, remember to continue to be safe and observe COVID precautions for kids who can't get the vaccine yet and immuno-compromised people like our Ollie and practice gratitude. We all have a lot to be thankful for, even when it may not seem like it.

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