A big, beautiful, blind life (with lots of hockey!)

Wow! We haven't written anything since early January, so we're happy to tell you that Ollie is still doing great and keeping busy! In addition to his usual weekly activities of skateboarding and Kids Kicking Cancer Canada's Heroes' Circle martial Arts program, the last few months have been filled with the Ottawa 67s Blind Hockey/Canadian Blind Hockey Association season, and the 6th annual (third year involved for us and it was the most successful yet - final amount raised to be announced soon!) Snow Angels for CHEO campaign with Ollie's class participating and doing  special group snow angels to help!

We also participated in a bunch of special events and activities such as: 

- Ollie's class went cross country skiing; 

- Attending an Ottawa Senators game against Colorado in the Wade's World Suite with friends thanks in part to the CHEO Foundation; 

- Presenting the CNIB Buddy Dog program at a Scouts Canada Cubs meeting;

- The Canadian Cancer Society's Palliative Care campaign commercial ran on networks and streaming services across the country  (Ollie loved the excited messages from people across the country saying they'd seen him on TV!) and Ollie's photo was once again on the front page of the Ottawa Citizen from our interview with them in support of the campaign; and

- We filmed an episode of an upcoming AMI-TV 6-part documentary series on Guide Dogs to represent the CNIB Buddy Dog.

Funny...when I write it all down I realize that winter really has been busy! I wondered why I couldn't find time to update the blog! 😂 And I am only doing it now because I happen to have down time on the way back from Toronto where we had the latest event...the 2023 Canadian National Blind Hockey Tournament! What an incredible weekend! 

[Photo description: Ollie models his new Canadian Blind Hockey shirt while getting ready for the Multisports Day of the 2023 Canadian National Blind Hockey Tournament. CNIB Buddy Dog Hope lies in the floor beside him wearing her best and halty while Mario peeks around from behind Ollie.]

The tournament was the biggest ever held by the Canadian Blind Hockey Association and was an invitational, so a handful of kids from Ollie's Ottawa team went. The event took place at the old Maple Leaf Gardens/current Mattamy Athletic Centre for Toronto Metropolitan University (formerly known as Ryerson University), so Mario was almost as psyched as Ollie, telling Ollie that he was having an experience in Toronto that his daddy had never had, skating on "hallowed ground". It is also located right downtown, so we stayed just two blocks from where we lived near Sick Kids Hospital for 5 months during Ollie's stem cell transplant in 2020.

[Photo description: Mario is driving while Dawn takes a family selfie on the way to Toronto for the hockey tournament. A smiling Ollie and Abby (with an Emoji head - she asked that her face not be shown as she was just waking up) were in the back.]

We took the whole family, having talked about whether it might be triggering to be in the same neighbourhood filled with so many of our hardest memories, and deciding everyone was okay and could handle it. I don't think it was a coincidence that we also traveled there on the exact day that three years before we'd traveled to the same neighbourhood for our first (false) attempt at transplant in the first week of the first pandemic lockdown. My how far we've come mentally and physically to get here now!

[Photo description: The family driving to Toronto for Ollie's first (false) attempt at transplant in March 2020. The van was packed full and Ollie needed morphine to manage the pain of sitting after being bedridden for the 2 months since he'd relapsed in his central nervous system and went blind.]

All weekend long I felt emotional, grateful, nostalgic...fighting tears - both good and bad. As we walked the same streets and took Hope to the same park that I'd once screamed and cried in when he'd relapsed there the second time and we'd been told maybe we shouldn't treat him and cause him more pain or sudden death. Thank GOD we didn't accept that. As I sat watching him playing hockey and meeting old and new friends all weekend with such incredible joy, I was struck again and again with how lucky and blessed we are. How much I could not have imagined being in this position three years before when everything seemed desperate and near impossible. We hear often what an inspirational story his is and I really felt that myself all weekend.

[Photo description: Ollie tries the most challenging rock wall with various angles at the bottom of the wall during Multisports Day.]

The weekend started with a Multisports Day sponsored by the Government of Canada - Sport Canada. Here kids with vision loss got to try rock climbing, ball hockey, soccer, tennis, basketball, and an obstacle course. In typical Ollie fashion, having done rock climbing before at CNIB Lake Joe and being among the biggest kids, he started on the hardest rock wall. It had a strange angle that made it the most challenging.wall. Ollie first attempted it on his own and was struggling. I went over to take a pic and asked if he'd prefer to start with an easier wall and when he said yes, we asked and were told he'd have to wait a few minutes for one to be available. I let him know he'd need to wait and turned away to talk to another parent. Moments later when I turned back to Ollie there he was high on the hardest wall having quietly decided not to let it best him.

[Photo description: Ollie on the hardest rock wall nearly at the top on attempt #2. The kid just won't give up. Thank God!]

He quickly finished his climb to the top and promptly repelled down and dramatically collapsed. When we recovered, he told me his arms felt like rubber. I asked if he wanted a break and then to do an easier wall. He told me when you have done the hardest things you already know you can do the easier stuff. What a kid! 

[Photo description: Ollie dramatically lies on the floor on his back after his challenging climb, while still connected to the rope while Mario and an instructor lean over to talk to him.]

The actual hockey tournament began  Friday with various divisions playing including the Children and Youth Divisions where most of the people we knew were playing. There was also a three game series of the National Team Canada vs. USA Men's Hockey Teams battling for the cup (Canada won the series).

[Photo description: Ollie and the Children's yellow/67s Team on the bench with their coach for the weekend]

Ollie was #55 (for staying alive we joked) yellow/67s Team in the Children's Division and while it was clear that his full blindness made his participation more challenging than for those with low vision, he had a blast, did all he could to contribute and was happiest playing in net where he could easily hear the puck coming at him. His Ottawa coaches were there, too and commented that maybe next year we should start training him to be a real goalie. Normally for the Children's Division they don't dress a goalie, but they do for the youth division. The hockey was fun to watch and the kids worked hard (they played one game each of the 3 days of the tournament) and had a blast off the ice, too. 

[Photo description: Ollie #55 yellow talks to the ref at centre ice before a play begins with players from both teams gathering for the puck drop.]

I think my two favourite moments of the tournament were in the last game at the end. The first was when the buzzer went signaling the end of the game, which Ollie's team won. While I knew winning would make him and his friends feel great, that's not what made it best. It was that his Ottawa friend Jack immediately skated over to the net where Ollie was playing and grabbed Ollie in the biggest hug!

[Photo description: Jack hugs Ollie in net after their big win. Photo courtesy of Jack's mom, Allysun.]

Then Jack let Ollie grab his back while he lead Ollie back to the bench. In blind hockey typically the players with more sight use a hockey stick to tow those with no vision (often the goalies) back to the bench. No man left behind.

[Photo description: Teammate and friend Jack leads Ollie back from the net to the bench after winning their team's final game. Photo courtesy of Jack's mom, Allysun.]

The second was during the medal presentation. Really they were all getting participation medals no matter who won, but my pent up emotions started leaking at how proud they all were, how much they'd all worked so hard and improved this year and how Ollie cheered as they announced all of his friends from his tournament team and his Ottawa friends on the other team, too.

[Photo description: Ollie puts his gloved fist in the air, cheering for his  friends as they received their end of tournament medals.]

The CNIB was a sponsor of the tournament so we also got to finally meet in person staff from the Toronto office whom we have met many times online and there were lots of awesome cross-over situations like seeing CNIB Lake Joe staff who are university students in Toronto and were volunteering, and other CNIB Guide Dogs Buddy Dog program families that we've either met at last summer's Ontario Buddy Dog Camp at CNIB Lake Joe or we've met from other parts of the country in the online CNIB Buddy Dog group. It was so fun to have Hope there who was so well behaved all weekend and to meet a few of the other new Buddy Dogs like Terry and Georgie, too! 

[Photo description: CNIB Buddy Dog Hope on the right with Ollie and Mario meets Buddy Dog Terry with Gabriel's mom, Melissa at the Parasports Day.]

My final favourite moment was Ollie meeting Curtis Ruttle today who played a big role in getting Ollie back to skateboarding after he went blind. When Ollie went blind during cancer and was having his stem cell transplant at Sick Kids Hospital (just down the street from the former Maple Leaf Gardens/now Mattamy Athletic Centre where the tournament was), he asked if he'd ever be able to skateboard again and mom told him she didn't know, but if there was a way we'd find it and try. 

[Photo description: Curtis Ruttle and Ollie meeting for the first time at the tournament in the Mattamy Athletic Centre.]

About two years ago and almost a year after transplant when Ollie was fully recovered,  we saw a social media posting from CNIB highlighting the ALT Route Projects where blind and low vision youth in Calgary were skateboarding. Mindful of this, mom was inspired to contact The Yard Ottawa about Ollie's wish to skateboard blind. Their incredible response was, "Let's get Ollie back in the skate park!", and they connected us with his new instructor, Jordan Wells.

Jordan and mom contacted The ALT Route Projects and connected with Curtis Ruttle who was then the passionate 16 year old who wrote the grant proposals, did the promotions and was the energy behind the project. He was super helpful in getting Ollie started with blind skateboarding safely. 

Today Curtis and Ollie got to finally meet in person at the tournament and talk about exciting ideas to expand the program in Ottawa and to other centres across the country! 

[Photo description: Ollie wearing his medal and sitting in the dressing room after the last game while he takes off his gloves.]

Ollie told me this morning how sad he was to be leaving and that the tournament was over. He met so many awesome new friends from across the country and connected with friends made virtually and in person through CNIB the past two years. We talked to so many parents and staff about the incredible CNIB Buddy Dog program, talked about ways to make programs and services even better for children and youth with vision loss in this country. 

I left feeling grateful and inspired to keep helping Ollie to live his best life. This is the life that I predicted he'd have but couldn't truly fully visualize after he went bind and we told the doctors when they didn't know if it was temporary or permanent that if they just saved his life we'd give him a big, full and beautiful one - no matter what. Thank you to all who help us to give him this incredible life.

[Photo description: Ollie receiving an emergency blood transfusion at Sick Kids Hospital on this very day three years ago, March 26, 2020. So grateful to be where we are today.]

The Epic Masked Stem Cell Crusade - 2 Years Later

[Photo description: Ollie is on ice skates again for the first time since going blind in January 2020. He is wearing a hockey helmet with face mask and holding his white mobility cane with a Dakota tip on it.]

Almost two months have flown by since we last posted an update! And it seems fitting to post today on the two year anniversary of the day that we left for Toronto to start Ollie's stem cell journey that would begin really well (despite the pandemic's arrival at the same time) with Abby's donation on March 31st, take us on an unexpected detour just days later when he relapsed a second time and would eventually need brain and spine radiation and a brand new drug untested in children obtained under compassionate grounds when the first and approved "miracle drug" didn't work for him, and eventually lead us back to a successful transplant in July 2020 and an incredibly smooth recovery to-date. 

In fact today Ollie is +610 days since transplant and the stress of just trying to get him through all of this and past the first critical 100 days after transplant seems decades ago to my brain and yet like yesterday in my heart. Especially this week as we heard that another CHEO and Sick Kids transplant family lost their brave warrior after 10 years of battling and over a year of post transplant complications that his poor little body just couldn't overcome. Another child taken unfairly and too soon, and a poignant reminder of how blessed we have been. All of our sacrifices have been worth it to keep him and some sacrifice so much more and still don't get to keep their babies. Please pray for the family of Mackenzy who have sacrificed SO much, but are so grateful to have had the past 10 years with their angel before letting the Creator take him to paradise.

It also reinforces why we are continuing to be diligent and masking (at least for a while) even after the mask mandate was dropped in Ontario this week. We continue to evaluate our risks, mitigate them where we can, sacrifice where needed. I just can't remove all protections and hope for the best yet with all that we have experienced and seen. Despite all of this we still live full lives of joy and gratitude because we understand too well how close we've come to the complete devastation of losing our child. There but for the grace of God go I.

[Photo description: On the left is Ollie's now well-loved official hockey puck from the Canadian Blind Hockey Association, which is about 3 times the size of a normal puck, is made of metal and has metal balls that rattle. On the right is a normal sized puck for perspective.]

These past two months since we last updated have been healthy and filled with busy activities like ice skating, playing hockey, and trying cross-country skiing with Ollie's class to name but a few! The kids have been blessed to attend a school in an urban area with a huge green space nearby so that they get to enjoy it at school often. From skating at nearby Champlain Park to cross-country skiing on the nearby KichiSibi Trail, Ollie's teachers have taken full advantage of the beautiful winter and gotten them out regularly to enjoy it. 

[Photo description: Ollie plays hockey with school friends at Champlain Park during outdoor gym class. Since Ollie is still learning to skate again since going blind, he opted to wear ice picks on his boots to enable him to keep up with class mates as they played.]

Given I have been in my last months off on leave, I took the time to go and help with Ollie so that he could experience it all safely and I could learn how to better support him to do it all with his peers. I remain grateful to his teachers and educational assistants who always help us to find a way to ensure his safe inclusion in every activity. Having a bird's eye view on how he interacts with his peers and vice versa has also been tremendously comforting. I am so happy to report that his friends go out of their way to help him and include him in all things. The very first day he was on skates again, two of his closest buddies were never far from his side, encouraging him and praising him for how well he was doing, saying how much they knew it was so much harder now that he was blind and he was doing it anyways. I was in tears and sent messages of gratitude to each of the boys' parents to thank them for raising amazingly kind humans. 

[Photo description: Ollie learns to cross-country ski on the KichiSibi Trail with his class, while assisted by his Educational Assistant, Mrs. Taylor.]

I know from experience with Abby already that these years where he'll want me to come to field trips and special events with him are for a limited time only and will end too soon, so I am so grateful for this time with him. And for now as he gets used to doing everything blind and all of the firsts are happening, it comforts us both to do it together. 

Thankfully while we cautiously participated post-Omicron, Ollie was happy to continue wearing his mask even outdoors and we were able to do all of this with relatively low risk for Ollie. 

[Photo description: Abby gets her COVID-19 booster at the #Jabapalooza vaccine clinic for immuno-compromised families in early February 2022. Dr. Nili Kaplan-Myrth and her team has organized vacination clinics for the vulnerable across Ottawa since vaccines were first available and actually gave Abby her vaccine. It was an honour to meet her and Abby even allowed her to take and Tweet out this photo of her!]

Abby has been so much happier being back at school, although in the past two weeks as it was announced that vaccine mandates would be removed in schools, she was highly anxious about it. She wants to keep her brother safe, but also wants to be "normal" and doesn't want to be the only "alien" wearing one. Thankfully there were 14 kids in her class (of 28) today wearing them and ALL of her teachers did as well. We remain thankful for all of these people who are protecting themselves and others like Ollie. We totally get that others want to get back to "normal" and hope that someday soon that will really be possible for everyone and not just because our provincial premier is looking for votes in an election that will be called any day now.

[Photo description: Ollie does a snow angel in the park on a sunny day as friends hold a Childhood Cancer Awareness flag nearby.]

We've been pleased to support the 5th annual Snow Angels for CHEO (#sa4cheo) this year again (our second year involved) to raise needed funds for CHEO's Oncology clinic and ward. The money is still being tallied as the campaign is just ending now, but it looks like the best ever result so far with more than $12,000 raised (last year it raised $8,000)! 

[Photo description: CHEO Bear and Ollie dressed as Cookie Monster and wearing a mask on his face give thumbs up while CNIB Buddy Dog Hope in her CNIB yellow vest sits at their feet.]

Ollie even got to participate in an event where most of the volunteers and CHEO Families featured in this year's campaign got together at CHEO with CHEO Foundation staff to make snow angels. Even Buddy Dog Hope came along for the fun! 

[Photo description: Ollie does a snow angel in his Cookie Monster costume at CHEO.]

[Photo description: A peanut butter and banana sandwich with a dog biscuit sticking in the middle made by Ollie as Hope's birthday cake for her third birthday on February 28, 2022.]

In late February we celebrated Hope's third birthday and in early March we celebrated one year since her "Gotcha Day" when she came to us! She has been among our greatest blessings over the past year and the confidence she has helped to bring out in Ollie since then is evident everyday.

[Photo description: Hope lies on her bed with her new football chew toy from Ollie on her 3rd birthday, February 28, 2022. A birthday sign made by Ollie is stuck to the wall above her head.]

Hope will be donating blood again for the Canadian Animal Blood Bank on April 2nd at the CNIB Canine Centre. Her (and Ollie's) summer is also shaping up pretty great as she'll be at CNIB Lake Joe a couple of times with the whole family and with Ollie and all Ontario CNIB Buddy Dog duos! 

[Photo description: Ollie and friends sit in an arcade race car game at a recent birthday party.]

Ollie got invited to a dear friend's birthday party recently and had a blast at laser tag. Mom had to tag along to be his audio guide and eyes, but he had so much fun! After the party in the arcade (it was way quieter in there after the party as it was dinnertime for most so it had cleared out) his friends grabbed Ollie's arm and lead him around the games, explaining everything and helping him up into some of the games. I watched in awe as 9 and 10 year old boys took responsibility for his safety and helped him to just be one of the guys. 

[Photo description: Ollie and friends straddle a motorbike racing arcade game at a recent birthday party.]

As a parent of a special needs kid you fear so much that your child will be excluded or made to feel less somehow. Even though we have built him up over the past two years to feel that he is NOT broken and still a normal kid who just needs a little accommodation or modification to do the same things as the other kids, I've worried that this would not be enough and his tender heart would be hurt by those who don't understand. So grateful that my fears were for the most part unfounded and he and his friends have all adapted so well and normalized it all for themselves. Kids are incredible when we teach them to accept and adapt.

[Photo description: Ollie stands in the kitchen holding his last cane bought in August 2021 and his new cane that just arrived. The old cane was a custom red for Ironman and the new cane is a blue and red homage to Captain America. He has grown so much in the past 7 months that his new cane is 6" longer than his last!]

Ollie is growing rapidly both physically and intellectually. We just received his new cane. His old one was bought 7 months ago and was 44" and his new one is 50"! Some days I wonder if the radiation he's had from treatments have made him a mutant as his feet have also gotten huge and he is now wearing a MEN'S SIZE 9 shoe!!!

Intellectually he is doing fantastic at school and is completely caught up with his peers despite missing the better part of 2 years of full-time school. He also recently had a Braille reading assessment. At the beginning of the school year his Vision Itinerant did a benchmark assessment and found that he was reading Braille at about a grade 1 level. Not surprising as he'd been a late reader before cancer and had just finished grade 2 a bit behind the average in reading independently. Plus his spelling was behind from missing so much school over the past two years. The latest assessment showed that he is now reading Braille at a grade 4 level!!! So he's advanced 3 years worth of progress in 6 months. A powerful combination of determination and a great teacher have made all the difference and his dedicated vision itinerant teacher last year focusing on his Braille literacy so he'd know it inside and out this year gave him an incredible basis to quickly launch from this year!

[Photo description: Matt Bennett, Senior Director of Corporate Partnerships and Consumer Products for the Ottawa Sports and Entertainment Group that includes the Ottawa 67's and the Ottawa RedBlacks sits in the stands at a recent Ottawa 67's game to bring Ollie a new 67's jersey with his name on the back and his favourite number 7. Friends and our family look on.]

During March Break we were invited to attend an Ottawa 67's game and bring some friends. Matt Bennett had heard that the 67's jersey that they gave Ollie when he was relapsing in Toronto (when Ray Skaff from Gabriel Pizza brought us pizzas and presents like the jersey) was now way too small and he told me to bring Ollie and he'd have a new one ready for him! 

[Photo description: A bald and relapsing Ollie wearing his first Ottawa 67's jersey in April 2020 in Toronto on the left and Ollie today wearing his new 67's jersey and a Canadian Blood Services Hockey Gives Blood hat at the recent game on the right.]

 The 67's game was our first public event in 28 months since diagnosis and we figured we'd better get out before the mask mandate was dropped and so many would be out without them, putting Ollie at greater risk. 

[Photo description: Mario helps Ollie to put on his new 67's jersey. the back reads, "OLLIE" and has the number 7 on it, which is Ollie's favourite number and has actually been retired by the 67's in honour of two previous players.]

[Photo description: Ollie braces for his third COVID-19 vaccine at CHEO.]

Also during March Break, Ollie got his third COVID vaccine at CHEO. Because he's immuno-compromised, he needs three instead of two for the initial doses. Now we wait two weeks for it to be effective and pray that he has an antibody response similar to others with a healthy immune system as many with compromised immune systems have even less effectiveness. 

[Photo description: Ollie wears his One Year in Remission t-shirt at CHEO while holding his mobility cane and a stuffed dog that he got after his third COVID vaccine.]

We've also recently reduced his t-cell kinase inhibitor (TKI) drug Lorlatinib from 100 mg to 75 mg in hopes it will reduce the hunger, weight gain, and paranoia he's often experienced on it. Since stopping two weeks ago his appetite has gone down significantly, and he seems better able to cope with most of his anxiety. He has MRI Ave CT scans scheduled for April 13 as part of the twice annual scanning that we have put into his post-treatment plan/roadmap that Dr. Abbott and I have agreed to. Hopefully it will confirm that he remains in remission with no evidence of disease. The plan is still to take him off of the TKI in July after two years and that will also allow us to give him his final re-vaccines (he can't get the live ones - measles, mumps, rubella and varicella - until two years post transplant and he's off of the Lorlatinib). Then we'll know for sure if the transplant really was successful or if it was the Lorlatinib simply holding the lymphoma back. 

[Photo description: Ollie and Mario give thumbs up while Abby and Dawn stand beside them. All are wearing face masks and Medieval Times crowns.]

We also decided to go to Toronto for the last few days of March Break to "Take Back Toronto" so that the kids no longer associate it with illness and isolation after the 5 months we lived there during transplant. The kids were begging us to go somewhere and again, we knew it would be harder once the mask mandate was dropped. We deliberately chose a hotel far away from downtown in the north end of Toronto that was very quiet. 

It was a fast couple of days so we didn't really get to see more than one family of friends who supported us so much through cancer and moved to Toronto this school year. It was lovely to see them, though and as always they were super careful to keep us as safe as possible. We were so glad to see them and miss them a lot. 

[Photo description: Dawn and Abby about to eat dinner at Medieval Times are wearing crowns and Abby is hiding her face behind a light up unicorn sceptor.]

We did a bunch of shopping (Abby was SO happy) and had takeout from the few favourite restaurants only found in Toronto.

We went to one public event which was Medieval Times as we'd promised Ollie long ago before cancer and never made it there. We also figured big arena was better than small restaurant, picked a mid-afternoon seating to avoid big crowds, asked to sit in the accessibility section far away at the back to be away from most other people and wore our masks except while eating. The kids actually had a blast (even Ollie who didn't think he would and was initially bummed not to be able to see it) and we spent a small fortune on unicorn adaptors, light up swords, as well as wooden shields and swords. Considering how little these kids have been out in public the past two years and all of their entertainment has been online, this seemed a small price to pay to make the event as fun as possible! 

[Photo description: Ollie shows off his new Medieval Times Shield and sword in the hotel room in Toronto at the end of March Break 2022 while Mario photo bombs in the background with his tongue sticking out.]

And this week they were back to school after careful consideration given the removal of masking in Ontario schools and public places today. I did an interview with CBC Ottawa Morning today to talk about the unique position that immuno-compromised families like ours are in with this change. They also published a print article about it here. Tomorrow I'm doing another interview. Not trying to stop anyone from living their mask free life, simply raising awareness of what it's like for immuno-compromised families and why people need to be humane and kind and respect that not everyone is in a situation where they can simply get on with maskless life and accept the risk of COVID.

We will continue to wear our masks and mitigate our risks for the next few weeks as we wait for Ollie's third vaccine to become effective and to see what happens with COVID cases and the Ottawa Wastewater Meter to determine when it may be safe enough for our family to remove our masks, too. If cases rise suddenly like they did with the first Omicron variant (reports of hundreds of thousands of kids in England having the new variant and it multiplying three-fold in two weeks are just now coming out) we may be forced again to isolate, but we sincerely hope that this time the modelling gets it right and it will not be as bad as the first Omicron wave was.

[Photo description: Ollie kneels in the kitchen floor to give Hope a hug.]

In the meantime, please take care of yourselves, get boosted and get your kids their shots if they are eligible and not yet fully vaccinated. Ollie has now had 19 vaccines over the past year (3 COVID since December and 16 other childhood re-vaccines since February 2021). We can honestly tell you that science works and your children are more likely to avoid serious illness and death when vaccinated. I promise you that you never want to be in the position where you are sitting at your seriously ill child's bedside praying for their survival and wishing you'd done more to keep them well.

To those still masking to protect families like ours, I am as always so grateful for all that you do to help us keep our Ollie safe and well. To everyone, please be well and stay safe.

Marie "Condo"-ing

We made it back to Toronto! The journey was uneventful for the most part and we are again grateful to our brother from another mother, Vic for packing us up and following us in a van with our belongings and moving us in, all while wearing gloves and a mask.

Our condo is nice and more modern than the last one, with the added bonus of an extra bedroom. At about 1100 square feet, it's still a lot smaller than our house, but it's comfortable and a block away from the hospital, so perfect for our needs. 

Toronto is busier than it was two months ago, but still not normal. Abby seems more comfortable this time, though and choosing a condo half a block away from the old one was a good decision. Ollie didn't want to stay in the same building as last time as he had bad memories of the relapse and wanted a clean start. We'll do anything to keep him mentally healthy as we go through this next challenge.

Abby got into the unpacking, putting all of our clothes away, Marie Kondo-ing them as she went. LOL

She picked a cosy little room off of the kitchen that would likely be truly considered a den. It's central to the living area, which will be good for keeping her engaged with the family since in typical tween fashion, she often wants to be in her room alone.

She brought a few things to personalize it and we bought a few things at the dollar store to make it feel like home for her for the next few months. I remember my parents moving a lot when I was a kid (they were divorced and one liked to buy, fix up and flip houses and the other was a real estate agent), so I got really good at making my new room feel like home wherever I was. 

We've lived in our house in Ottawa for 15 years this fall and I never imagined Abby would have the experience of trying to make a new place feel like home during her childhood. She's had a lot of new experiences because of cancer. Hopefully they will make her strong and adaptable her whole life, although I pray she never needs those qualities for a challenge like this one again.

She's also gotten into fresh smoothie making daily. It helps us to stay healthy and gives her something productive to do each morning, too. They're delicious so far!

 

Ollie has had his stressful moments, but has mostly been okay. Friday's radiation planning was tough as he was being obstinate when they tried to do his CT. They do the CT on his back with his head turned and then on his stomach with his head turned. When they did his stomach he screamed and cried- saying he couldn't keep his neck turned to that side for so long. Honestly he can do it, it's just that when he becomes fearful of something or has had enough he refuses to try. 

The technicians and the coordinator, Rita, were lovely and helped us through it. He did get it done in the end, but it made me nervous as we'd decided to do the two times daily radiation without sedation to make it faster and easier for him. If he has the sedation he'll have to be NPO (no eating, only sips of clear fluids allowed) from midnight until about 5:30 pm. That's because they need 7 hours with an empty stomach before sedation and his radiation is at 7:55 am and 3:30 pm. He'll be a bear if we have to do things that way! 

He says he'll work at stretching his neck next week and try it without sedation, but if he can't, it will likely change the timeline on everything and we NEED him to get the treatment and transplant ASAP. The good news is Ollie ALWAYS gets the hard stuff done. As much as he blusters about things he doesn't like, he never gives up. 

Mario is doing alright. He's holding on to that crazy beard until Ollie gets his transplant. Superstitious. He's been calmer this time settling in to Toronto. We both feel more confident, less fearful and more determined than ever that we are getting that transplant and leaving here with a child in true recovery after an agonizing year. 

He's still working from home thanks to his organization still being closed and his boss being so understanding. Friday a kind friend and colleague of his brought the family some Roti and jerk chicken. It was delicious and a lovely change.  

 

Ollie slept a lot yesterday and that worried us. His sleep patterns have been off at night lately, though so he's pretty tired at times during the day. Thankfully having consulted with some kind parents in the UK (thanks Lisa and Julia!) who have already been through this with their kids who have the same cancer, we believe it's due to finally stopping the Dexamethasone steroids this week after 5 months on it constantly and starting on the new hydrocortisone. The hydrocortisone should help to restart his own production of a natural steroid (cortisol), but so far has given him acne, dry skin and some minor mood changes. 

Given this, yesterday was a rough day, peppered with a few bright moments. Between worrying about how much he was sleeping (always fearful that lymphoma is back in his brain and trying to take over) and the online funeral that Abby and I attended for little Malcolm, we were pretty spent by end of day. 

Before the funeral though, a sweet friend from my youth, Frances and her son drove from the Hamilton area to bring us fresh preserves and canned pears. A true taste of home. When we were here last time and I was in the hospital with Ollie when he relapsed, she sent me the most beautiful survivor story and message of hope about her incredible daughter. She told me that miracles DO happen and that her daughter was daily proof. That was what I needed to hear at that moment. A heaven sent message that helped me to keep going when I felt all was lost. 

And she was right. It's a miracle that despite the odds he got back into remission and is here to get that transplant. Miracles happen. We don't need another miracle, just stability and strength enough for him to get through transplant and get truly well. We can do this.

I think maybe she was sent to me again yesterday to bring me strength just before we attended little Malcolm's online funeral. Like informal spiritual strength being brought to me. I'm surrounded by strong mamas who have done the hardest things and got through them and so can I. 

I've never attended a child's funeral before and I pray to God that we never have to again. It was a beautiful service, but that little white casket was devastating. His parents are so strong. Especially his brave mama. But she knows she has two other children that still need her. One of them still in her belly. She feels grateful to have been his mama. Not angry (although that may rightfully come later) at him leaving too soon, but pure love at having had him for any length of time. She is so kind that on the day her son died she also wished us well in Toronto and asked us to keep her posted on transplant because she wanted to know and Malcolm loved Ollie. Mamas are the bravest warriors, soldiering on and spreading light even in their darkest moments. 

Abby insisted on watching with me. She's an empath like me and felt it deeply, especially as she knew Malcolm has an older sister who just lost her brother. I tried to comfort her, telling her little Malcolm was too little and sick to fight the tumour after battling for 7 months and that I can't believe God would make Abby the stem cell donor for her brother, make him relapse, get him well again for a second attempt at getting her stem cells and not let her save him. Then I backtracked a bit to tell her if it doesn't work it's not her fault and she's done everything she can. It's hard not to give her mixed messages right now. I can only reassure her that I feel deeply that we are on a journey to remind people what's really important in these difficult times and to share our faith for those who may need some right now.

I apologize as I don't want to make it seem like I am hijacking nor exploiting Malcolm's story or his family's pain. It's just agonizingly a part of the cancer journey and as I try to be truly honest about what it's like, I must also include the things that impact us and our mental state, even if they are part of someone else's story. You're going to know some people who don't make it despite their brave fight. When it's a child, I think it's universally understood that it's so much more tragic and how could we not be affected by this beautiful family's story?!

So last night when Ollie finally woke, refreshed and full of energy, we were so grateful and played blindfold NERF gun target shooting with sticky darts with him. The blindfold was to even the stakes for Ollie given his blindness. We played in teams and gave directions to the blind/blindfolded person to help them hit the target and get the points. Ollie was thrilled, especially since he won.

Overall we're feeling okay and resting up this week for next week's radiation and chemo. We are studying plays so we have some tricks up our sleeves when we need them and readying for the big game in which we intend to come out the victors. Please keep cheering and praying for us. It pumps us up and makes us eager for battle.

The Last Battle

The last handful of days have been eventful and exhausting. On Sunday we learned that our CHEO friend little Malcolm passed just ten days shy of his first birthday. His brave mama was my first real friend at CHEO and Ollie adored Malcolm. They had learned Friday that treatment was not working and they were preparing for end of life. Gut wrenching. 

I cried so much over those three days. I mourned for a beautiful family who have fought so fiercely for 6 months, living far away from home, constantly in hospital and still always being so friendly and kind to everyone around them. I wept for little Malcolm who loved sitting on the nurses laps while playing with a calculator. We had joked that he'd be an accountant for sure! I was sad for his sister who not only lost her brother, but 6 months without her whole family together. And I tried desperately to understand why some of us get a chance to save our babies and others don't. Why was his last battle one he couldn't win and ours is win-able?

I was indebted for the chance to save Ollie before, but now I feel like we really have to do this for those that don't make it, too. That we have to fight even harder to be successful in transplant to vindicate the loss of brave warriors like Malcolm. I'm not sure how Guardian angels really work, but maybe Malcolm is now Ollie's. This thought comforts me.

So the week had already started off difficult and then Ollie had multiple tests at CHEO each of the last few days so that Sick Kids Hospital is totally certain we're ready for transplant. 

Monday's CT confirmed that there is no evidence of systemic cancer. This is a huge relief. Now we just have to keep it out of his brain until radiation begins on July 14. 

Tuesday Ollie was supposed to get bone scans done to confirm his bone density as they can see on the MRI and x-rays that his bones have thinned and suspect that he has osteoporosis from the chemo and prolonged steroid use. 

They can do a calcium infusion called a bisphosphonate every 4 weeks that will help, but this could mess up his radiation and stem cell transplant, so we have to wait until after. 

Alas, after doing the first scan (see photo below), we could see that the contrast that Ollie had for the CT on Monday was still present, so they were unable to do the baseline scans because the bones would appear thicker. Hopefully we can do them at Sick Kids next week.

The rest of the tests were rough Tuesday because Ollie was tired and grumpy and frankly, scared about transplant. This makes it all so real. 

He also had a GFR test to check his kidney function, an Echocardiogram to check his heart, bloodwork, a dressing change and a COVID test. He fought the COVID test and after many attempts to persuade him to cooperate, four of us had to hold him down while he screamed, cried and kicked. He was so angry. 

Afterwards he cried in agony and said he was so tired of being tortured and didn't want to do it anymore. In his dramatic 8-year old way he insisted he'd rather die than be sick again and not have control over his own body. I cried with him over the injustice and indignity of it all and told him I hated to force him, but we have a chance to get well (a chance some never get) and we're not going to let it pass us by. 

All the while, the empathetic child life specialist, Manon was with us and rubbed my back and Ollie's intermittently as we both cried. She and the nurse, Sue (who had been there for our very first procedure which coincidentally was a bone marrow puncture) were kindness personified and I was overwhelmed with gratitude for these strong women who help us

with the hardest things imaginable and still come back and do it all over again the next day. It takes a special kind of strong and dedicated person to work with sick kids and their families day in and day out.  They are all angels on earth.

Thankfully there have been good moments this week that make up for some of the bad. Abby participated in the Great Make A Wish Campout to raise money to help fulfill the wishes of Wish Kids like Ollie and our friend Hillary. 

The rain came, but was short lived and left a double rainbow in its wake. We raised $1,100 thanks to the generous donations of friends and family. I feel like we're always asking you to help, but you keep showing up! Hopefully going forward it'll be just this kind of help we ask for to help others instead of ourselves.

Ollie was sad not to be able to camp out, so he and daddy made a tent around his bed and had epic Beyblade battles.

Ollie also had two osteopathic treatments this week. Dear family friend Elliot Vlad offered last fall to treat Ollie for free and I admit, I knew little about osteopathy. I did some research and found that osteopathy can at the very least help cancer patients to manage pain and discomfort and relax. That was enough for us as Ollie needed all the help he could get. Elliot began treating Ollie in January, coming to the hospital and doing treatments, often when Ollie was sleeping. What we found was every time Ollie had a treatment, he'd sleep better, the next day he'd have way more energy and he'd be able to do things he hadn't done in a long time (like take a long walk or climb stairs). 

At one point Mario was with Ollie during a treatment. He didn't know Elliot that well and he is a natural sceptic, but this is what he texted me after the treatment. 

Ollie's feet and legs have been very swollen because he is retaining fluid and his lymphatic system is blocked up from the steroids and chemo. So Elliot saw Ollie Monday after his regular day at his and his wife (and our dear friend) Tamara's clinic, Life Therapies and also gave up part of his Canada Day yesterday to squeeze in another treatment. 

The difference is always impressive. Ollie hadn't walked up the stairs without assistance in days, but Monday night and since he's had no issue and says his feet don't hurt anymore. He's able to get his regular shoes on for the first time in weeks. On Tuesday at CHEO he was his old full of beans self and even his oncologist couldn't get over his energy level and how well he was moving.

Most important, Elliot has schooled us on what we can do at home to keep him moving well. Ollie is also under strict instructions to wiggle and shake his body a lot and he is happy to oblige.

I have long believed that it's generally a combination of therapies that heal us and wish that hospitals and governments that make decisions about what is a covered treatment and what is not could better understand the intrinsic value in things like osteopathy. We are beyond thankful for Elliot and Tamara (and their sweet kiddos who are friends with ours) for sharing their skills and for their ongoing kindness.

Abby has been readying to leave again, knowing she likely won't see her friends in person all summer. I am struck again by how much sacrifice she has had to make this year to get her brother well and how most of the time she accepts it with grace.

Chewbacca (the cat) seems to know that his warrior buddy is leaving again and has been his constant companion lately. Ollie is going to be so great with his CNIB Buddy Dog when our turn comes to get one after he is well!

The selfless folks at Gabriel Pizza came through with half baked pizzas to freeze and take for the journey to Toronto. Ray Skaff, Mike and team at their Vanier location on Montreal Road arranged it all and were so gracious and sweet when I picked them up yesterday. 

Also yesterday on Canada Day, I got a call from my lovely sister-in-law, Nikki to tell me that her brother and mother in Blenheim, Ontario (my hometown) had seen Ollie's Pizza on the Marilyn Denis show. So I went online and watched and sure enough, they featured it as a Good News story! You can watch it here at 35:38. So we've gone national with our little story about a boy, his pizza and helping kids fight cancer through Candlelighters. 

When I started this blog 8 months, 116 posts and almost 99,000 views ago, my main goal was to raise awareness of childhood cancers such as his very rare Anaplastic Large Cell Lymphoma. Never did I imagine that we'd go national or have followers from around the world. Mario and I were teary yesterday watching our story on The Marilyn Denis Show and we are awestruck that so many of you are interested and following along. Thank you for validating my labour of love.

So we finished packing what we could last night and fell into bed exhausted.

Today we're on the road to transplant. It feels surreal but so good to be doing this again. I feel more confident and we're all less stressed this time, knowing better what we're getting into. Ollie has been great the last two days. Getting to his place of strength where he knows that he has to do more hard things, but pragmatically accepting that he just needs to get them done. He is a model of adaptability, perseverance and determination. 

Thanks as always to our village for equipping us for this last big battle. From bringing us dinners the last weeks and sandwiches for the journey, taking care of our home and zoo of pets while we're away, offering to take Abby in September if school starts normally, packing us up, and sending so many messages telling us you're behind us, we know how blessed we are and that we've gotten this far due in large part to your love and contributions. Ottawa, we'll miss you and be back as soon as we can with a well Ollie.

Toronto, we're on our way! Thanks for already helping us by making masks mandatory in indoor public spaces starting next week! We look forward to a much better experience with you this time!