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.

Cancer and Contentment

Our family has long prioritized being together and having fun experiences over a big, perfect home and expensive lessons, sports participation, etc. While there are many days that I long for a perfectly organized and pristine home, I wouldn't trade our often chaotic home and time together for it. It's especially true right now, when we're home a lot and could be finishing so many home projects at the expense of missing precious time together. These last 7 months have again and again reminded us that nothing is more important than just being content together.

So we've been splashing and playing together in our giant kiddie pool, having water gun fights, Beyblade tournaments, board game nights and anything that amuses us and brings joy.

It takes me back to my own childhood when we always had a pool. First when my parents were still together, an above ground pool until I was Ollie's age and later as a teenager when my mom and stepdad put an in ground pool in. 

Abby has been having a lot of virtual playdates online and dug out her sewing machine to make some Barbie clothes with her friend Emma (with thanks to Magda-Lena for giving virtual advice).

Ollie has been doing so well with the walker and his virtual physiotherapy sessions. He worked especially hard this week for a reward. I offered him a toy and the little devil negotiated cash instead! 😄 Whatever keeps him working hard!

Abby has been so wonderful with Ollie and so patient in helping him to have fun, even if we have to modify how we normally do things to make that happen for him. I am so proud of the young woman she is becoming. 

She made a decision about where she wants to go to middle school. We have a dear friend who teaches there and she offered to connect us with the administrators to ensure that Abby is well-supported next year given our family's situation. I then got the loveliest messages from the school's resource teacher and the principal, so we are very grateful to know that Abby will continue to have caring educators around her when we cannot be with her.

In the meantime, Abby remains stressed at the idea of being physically close to those outside of our family as she fears that one of us will become sick and infect Ollie. Everyone must make the best decision that they can for themselves as Ontario continues to open up further, but we know too well the extra danger our family is in, so we'll have to continue to be extra careful as we wait and see what happens regarding COVID-19 cases. So Abby is working with the social worker to deal with her fears and we are limiting our contact as much as possible both for safety and to ease her fears.

On Tuesday we were at CHEO for the weekly bloodwork and dressing change. At the last minute, our oncologist was able to get us an appointment with Dr. O'Connor in Opthomology to check out Ollie's eyes and optic nerve. Thankfully Ollie has had no further eye pain, but has had dry eyes and discharge (which are also side effects of brain radiation), so we wanted to get that checked out.

The doctor had a beautiful bedside manner with Ollie, telling him each thing he was going to do before doing it, so Ollie was comfortable and calm. He looked at his eyes, did a dry eye test to verify if that's all it was (which appears to be the case) and told us things look as he would expect them to at this point. He gave us steroid drops if he has any further eye pain. He said he can still see that parts of the optic nerve are pale indicating damage and it makes sense that he would see light intermittently. 

Ultimately they're pretty certain now that Ollie will remain blind, or will be significantly visually impaired if he recovers any ability to see colour, light or shapes/forms. Honestly we're all okay with this. We've made our peace with it and are focused on kicking the cancer out. When you are fighting to save your child's life, his sight is so secondary in the big scheme of things. 

He's accepted it and only feels bad about it when others say it might still come back around him. He told me he feels like when they say that they will think he is less able because he can't see, but he CAN see now with his hands and his ears and even with his sense of smell. We've told him he can do anything he sets his mind to and he has. He's a smart kid and he knows what the doctors have said. HE has lived in darkness for 5 months and adapted. Now everyone else around him needs to.

On Wednesday Ollie and I did a radio interview with Sam Laprade on her Special Coverage of COVID-19 show on 1310 News. She's been following our blog and for National Blood Donor Week, she wanted to profile Ollie's need for blood products. Ollie completely stole the show and I was so proud of him and Sam was thrilled. You can listen to our interview here (we are on just after the 37 minute mark).

In the interest of moving forward, we had our first virtual lesson in Braille on Thursday with Leona from the Canadian National Institute for the Blind (CNIB). 

She had Ollie use half of an egg carton and 6 ping pong balls as well as a die to learn the dot system for Braille. She made a game out of it and naturally, Ollie won. 🏆 Next week we'll learn how to start putting the dots together to make letters. 

We've applied for a Buddy Dog through the CNIB which prepares kids to eventually have a guide dog. The Buddy Dogs are trained at the CNIB's facility in Carleton Place and help kids to get comfortable with dogs and starting to use them as their eyes. There's a waiting list, so it'll likely be a while, which is good as we want to get that stem cell transplant first. Most importantly Ollie is thrilled about the idea and it is really motivating him to embrace his blindness and learn to do things independently so that he can get the service dog.

We also got a call that afternoon from the Vision Itinerant team at the Ottawa Carleton District School Board. The Ottawa Catholic School Board (OCSB) contracts the OCDSB's team to provide services to blind and visually impaired kids like Ollie. The CNIB helped us to make contact so we can start the ball rolling on getting resources and an itinerant teacher for Ollie beginning this fall. He'd still have his regular teacher in his regular class at his current school, but he'd also have an itinerant teacher to help him with Braille and assistance in the class for 50% of the day and an educational assistant for the rest of the day. The Board will provide him with technology and all resources that he'll need for school and home. The best part is that Ollie's rights under the Charter of Rights and Freedoms are guaranteed as he cannot get an education without this accommodation, so they cannot be cut or taken away. 

I have never been so grateful to be Canadian. No medical bills and my special needs child will still get resources and an excellent education without us needing to send him to a special school.

Also on Thursday our friends the Navas stopped by to drop something off and it turned into an impromptu socially distanced water gun fight. Ollie was so thrilled and was really good at using his ears as his eyes. Each time the girls squealed he easily pinpointed their location and hit them again. He was so mischievous and gleeful that it made everyone happy. 

Thursday was also my birthday, so as usual I spent it with my beautiful family who all made it special. Ollie made me some jewellery with a bit of help from his sister. Abby bought me things with her own allowance money this year and was way too generous. My favorite of her gifts was a beautiful little book that she filled in all about me. It made me tear up. 

Mario also bought me lovely gifts, aided heavily by Abby who insisted on running the show this year. 

Between them and dear friends who dropped little thoughtful gifts by and the many calls and messages that I got yesterday, it was a beautiful day and I was so grateful for the love and good wishes. Pretty sure you all know what I wished for...

Today was another good day with a chat online with his friend Henry and a Google Meet with his class where he was thrilled to answer their questions about his treatments and to share his latest news. He then played Beyblades with Daddy on the deck for a while. 

We got ice cream cones later and had corn on the cob with dinner on the deck (at Ollie's request despite how cool it was), could the day have been any better?!

In the blink of an eye...

I can hardly believe it's already been a week since I last posted! So much and yet so little has happened since then.

We've spent a lot of time on the deck as Ollie loves it. The photo above was a bit crazy though as it was one of those really cold days this week and we had Ollie all wrapped up in blankets while wearing warm clothes and we started the fire to stay warm!

Ollie had a visit to CHEO's Medical Day Unit (MDU) on Tuesday and they added a Friday visit since Tuesday his hemoglobin and platelets were low and they wanted to check if he needed a transfusion before the weekend (he didn't!). His dressing change on Tuesday was likely his calmest ever. Since we've stopped his morning dose of Olanzapine (anxiety med), it was all on his own steam and self-regulated. Impressive.

He'd been having some eye discharge and starting to see light again at night in a dark room when lights are turned on. A sign that his optic nerve is no longer suppressed by the lymphoma (we think). Also a possible side effect of the radiation. Unfortunately when we got home Tuesday afternoon, Ollie had terrible eye pain that required Tylenol and an ice pack under his eye mask. He slept a bit and still had it when he woke, but it did go away that evening. The next morning it was the right eye, although less painful and short-lived. 

This was scary for us because when he last relapsed in Toronto it was headaches and eye pain. The doctor checked him out Friday and thought everything seemed okay, but reminded us to let them know if he has any headaches. They also asked for an opthomology consult soon for his eyes and nerve to be rescanned.

Our friends Kim, Trevor, Ewan and Jackson kindly dropped by some specially ordered rare Beyblades for Ollie while he was feeling unwell and that really perked him up!

By late in the week he was in great form and happy, although getting a bit bored given we now have more time at home. So Daddy helped to set up the Ipad that Candlelighters provided him with and I downloaded some accessibility tools and apps for the blind. There are games that you can play even without sight! The first he tried was called, "Blindfold Racer". Essentially using the Ipad like a steering wheel and wearing his wireless headphones, he is taken through a race course where he's driving between two fences and gets audio cues to tell him where he is. If he gets too close to the left fence, it beeps in his left ear and he has to steer right and vice versa. There are also obstacles like chickens and cows that cluck or moo in the ear closest to them. The first time he competed a level he excitedly shouted, "I DID IT!!!" He was so proud to be able to do something he always loved before he went blind. I teared up and said a silent player of gratitude for that video game developer. There's something I never thought I'd do!

He also joined his and the other two grade two classes in an online Google Meet on Thursday and was thrilled to be welcomed and included. 

Abby's been keeping busy with personal projects like tie-dying everything white that we own. 😆 She's still doing some schoolwork each day, but has been kinder to herself since her teachers have told her there is zero pressure from them. Her virtual leaving ceremony is coming up June 19 and we are all sad that her last year has gone this way.

On Friday Ollie's lovely physiotherapist Allison came to the house with Shellie from the equipment company Motion to fit him up for a walker. We don't think he'll need this for long, but feel this will give him the confidence to be more mobile and independent. He desperately wants to be more of both. Another day when friend Sean dropped thoughtful gifts by and I was on the porch talking to him as he stood on the sidewalk, Ollie appeared at the front door unassisted. Mario was working at the dining room table and hadn't heard him get up and come to the door. While we're happy he wants to get up and go, it's frightening too as he's still wobbley with his balance not quite right yet. Again it's a lot like when your baby takes their first steps and you're so excited and scared all at the same time. So at least with the walker he will be supported.

Chewbacca has become Ollie's frequent lounging buddy. 

At first this made me nervous, too as animals have an innate sense of when people are sick and need help. A month ago I think that was true. Now I think they've further bonded and Chewy just loves to snuggle. Ollie is pretty thrilled with the arrangement.

As for me, I'm trying to get things done, like go through the kids clothes and give away anything that doesn't fit. Organizing my own closet to do same...doing paperwork for insurance claims for medications and equipment...sending notes of gratitude to so many kind people who do beautiful things for us regularly. 

And today I donated blood. This is something I have been wanting to do for a while but have not felt up to physically or mentally. It is also something tangible I can do while we wait for his MRI to happen the week of June 22. It took just over an hour, was beautifully organized and socially distanced and it was steady. When your child relies on the availability of blood products for random transfusions you have a deep appreciation of the importance of these donations. I've been a donor in the past, but had issues with iron and often couldn't donate. Thankfully all of the supplements and immuno-boosters I've taken for 7 months have solved that problem (with thanks to my friend and Naturopathic Doctor, Colleen McQuarrie at Ottawa Integrative Health Centre for keeping me well with her good advice).

Finally, the kids were asking for the kiddie pool I gave away several summers ago and begged for a new one, so we upgraded their idea a bit. It's a bit crazy in our small backyard, but they need entertainment and we need something safe for Ollie to play in (lakes, the river, etc. are out for him given bacteria), so a 12' by 30" pool with filter will be our fun this summer. And it will be worth any joy it brings them. Hopefully they won't get hypothermia, too!

Overall a good week, with Ollie mainly feeling good and being his silly chatty self. He's all set to enjoy summer with his pool and waterguns (loved it so much he napped with it!). He also has a birthday coming up at the end of the month, so we're gearing up for a few good and fun weeks!