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.

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.

Abby's Point of View

On December 3, 2020, Abby's Point of View piece was published by CBC News Ottawa on their website and on social media. She'd been asked to do this piece back in August when we were still in Toronto for Ollie' s stem cell transplant and one of the producers saw the blog post that she wrote at that time sharing how she was feeling about Ollie and COVID. 

She's always wanted to be a writer and writes profound, insightful pieces for one so young. She was thrilled to be asked to do this and even more thrilled later to find out she'd be paid for her piece, so it was not only her first published work, but also her first paycheck ever, too. Stem cell donor, advocate, writer and breadwinner at 12 years old!

The letter that she wrote was accompanied by a video of her reading the letter and photos of our journey to get Ollie well. She worked on the letter for months with the editor/producer and the videographer spent a lot of extra time working on making the video as beautiful and moving as her letter. 

To-date it has been posted on CBC Ottawa's Instagram, Facebook and Twitter accounts, CBC Kids News and was featured in the CBC National News that night, too! Overall it was a tremendous experience for her, although the outpouring of response has been overwhelmingly emotional for her.

Our Member of Parliament and Minister of Infrastructure and Communities shared it and sent Abby a message...

And of course, Alex Munter who is the President and CEO of CHEO shared it, too! 

And Canadian Blood Services shared it to promote stem cell donation, of course!

She got messages from the Prime Minister's staff, Ministers and Members of Parliament, doctors, lawyers, teachers, nurses, authors, national and local journalists and media personalities and so many others across Canada! Family and friends from across the country were so excited to see her on the National!

We are so incredibly proud of her and her bravery in not only giving Ollie stem cells, but also for sharing her donation story with Canada and using it to highlight the importance of masking up and protecting those that are most vulnerable right now.

P.S. - Ollie is still doing great and we'll share an update on him again soon!

Bubble Family and a CNIB Dog

Radiation planning happened last Friday. It was a difficult morning because Ollie was feeling stressed. Although he'd been to Princess Margaret Hospital for radiation planning before, this time he was not sedated. All they really needed to do was take a CT of him on his back with his head to one side and his front with his head to one side, but he fought it every step of the way. 

For the total body radiation that he'll have twice a day for three days next week, he'll be on a mattress on the floor. They basically "tent" the radiation beam over his entire body. Twenty minutes on his back, then he can take a break, go to the bathroom, stretch or whatever he needs for a few minutes, followed by twenty minutes on his front doing same. He cried that he couldn't be on his stomach with his head turned to one side for 20 whole minutes! He did eventually get the 3 minute CT done on his front last week, but it was a battle. 

So we've been practicing at home since and that little devil insisted on doing it for the full 20 minutes the first time with no problems then or since! He'll be fine once we get into the groove, but I'm not looking forward to the twice a day and having to lie around in a room in the Sick Kids Day Hospital in between. If he feels well enough, he'll come back to our condo each of the three nights.

We've had his check up with the Bone Marrow Transplant team and his levels are good, all the tests we did last week came back clear and he's ready for transplant. I've signed a pile of consents for his radiation, chemo and transplant. They tell you all of the risks including the mortality rate from transplant (5-10%), but as I told Dr. Ali, it's not like we have another choice if we want to save him and if I had believed the statistics the last time I was with him when Ollie relapsed, I wouldn't have believed he'd have made it back here to transplant at all. He laughed and conceded the point, saying how impressive it was that he was back and healthier and stronger than the last time. I told them not to underestimate my boy.

His new hydrocortisone steroid is making him quite sleepy during the day, so he maps a lot and he sleeps only about 5-6 hours at night. We're adjusting his dosage and timing in hopes we can fix this.

Ollie's been begging to see grandparents, so Gamma (my mom) and Bumpa (my stepdad) became part of our bubble the last few days, driving up from Blenheim to spend time with us. It's been 6 months since we last saw them at Christmas. That was after round 1 of chemo when Ollie was still his active and sighted self. So much has changed since then, but not our joy at being with them.

It's the first time since COVID that any of us have touched or hugged anyone but our little family. The kids were so happy. And I was grateful to have my mom with me. As a mother going through one of the most difficult things one could imagine as a mother, I have found myself often wishing that my own mother lived closer. She has been a constant support through this, calling and texting almost daily, reminding me to take care of myself too, her and Carl sending packages and money regularly for whatever we need. 

She's told me more times in the past 9 months how strong I am and how proud she is of me than I think she has my entire life. I've been a strong and independent woman since I left home for university, always wanting to do things on my own. The few times I have asked my mom for help (mostly to come and care for the kids for a few days when we didn't have childcare, when I had Ollie, etc.) she always agreed to come. Every time we have invited Gamma and Bumpa to meet us somewhere for a vacation, they have. 

They are excellent grandparents and my children adore them. This visit didn't disappoint either. They arrived loaded with groceries and many gifts from my aunts and cousins. 

They were simply happy to do whatever we needed and the kids wanted while they were here. From my always hustling and bustling mom taking time to play Beyblades and Connect Four with Ollie...

...to them both patiently learning Braille while professor Ollie taught them, Gamma and Bumpa made time for what is most important. They took walks with Abby and asked Ollie many questions about his Beyblades so he could demonstrate his expertise.

Bumpa has infinite patience and was great at giving Ollie clear directions to build Lego. And I can tell you it is not easy to give a blind person specific instructions that help them to see with their hands...especially with something as small and intricate as Lego. 

Abby was so happy to be with them, too. She's getting better about her fear around COVID thanks to working on it with her social worker. 

We assured her before Gamma and Bumpa came that they were socially distancing and wearing masks everywhere in public and that Chatham-Kent had less than a handful of cases left and had only ever had a few dozen in total during its height. 

She was happy and silly during their visit and my heart felt happy to see her being a normal kid.

Bumpa is also pretty great at bringing out their silly sides...

We also had our phone interview for the CNIB Buddy Dog Program on Monday. We were fascinated to learn more about the Guide and Buddy Dog Programs, especially the fact that most of their dogs are bred in Australia, placed with families in Canada to be socialized and conditioned before actually being trained as Guide Dogs in Carleton Place, and that the CNIB pays for all of their food, vet bills, etc. even when they are finally placed with their ultimate owners! We were shocked, but grateful and intend to be regular donors to CNIB when we're both back to work.   

We made it onto the waiting list and they offered us the chance to meet one of their dogs in the Ambassador Program. Given Ollie is psyched about getting his Buddy Dog and we know the next weeks will be long and difficult, we want to bring him as much joy and stimulation as we safely can this week, so we agreed to meet Ziggy the Dog and Audrey his handler today. 

Audrey was so kind and patient. It was easy to see why the CNIB chose her to be a host family for Ziggy and later an Ambassador in the Ambassador Program when they discovered that Ziggy had hip displasia that counted him out as an actual Guide Dog. 

Ollie was pretty happy to have the experience. Everyone asked a ton of questions and Audrey patiently answered them all. Since we come from a big family of animal lovers, we all enjoyed the experience.

Ziggy also brought Ollie a little Buddy Dog stuffy (and then promptly licked it causing Ollie to laugh) to remember the visit. 

We're all pretty excited about this opportunity for Ollie now and feeling more comfortable about the resources available to make Ollie's unsighted life easier going forward.

Ollie also got a package of rare Beyblades today, so was pretty happy overall despite having to say goodbye to the grandparents this afternoon.

Abby got a silly dinosaur night light that is apparently all the rage on TikTok and YouTube these days. 

Before they left, Gamma and Bumpa were full service guests, washing their bedding and remaking the bed before leaving. My Energizer Bunny mom had also vacuumed and washed all of the floors yesterday while I was at the hospital with Ollie and Mario was working.

So we are feeling loved and grateful for family, while knowing we have many many more in Chatham-Kent and in Western Canada who wish that they could come and help, too.

We have no more hospital visits this week, but will be at the hospital every day next week prepping for transplant.I find it so surreal that we are back and a week away from transplant. Please God, keep him in remission while we get to transplant.