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.]

All I Want for Christmas is a COVID-19 Vaccine and a Victrectomy...

[Photo description: Ollie sits in his seat in the van resting his hand on Hope beside him when being picked up from school. The red seatbelt cover has a Medic Alert symbol on it and inside contains details on Ollie' s medical conditions in case of an accident.]

It's hard to believe that we are now less than two weeks away until Christmas again! Getting everyone here into the Christmas spirit has been a bit of an uphill battle again this year, but we've slowly gotten there. 

[Photo description: Ollie sits on the sofa beside a sleeping Hope while playing with a tactile Mini Mini-Golf game on the ottoman in front of him. 

As usual, Ollie was most like me, so was actually interested in celebrating the holidays and helped me to drag Abby and Mario into the spirit. We decorated the last weekend in November - earlier than we ever have. Mario thought I was crazy, but went along with it and tried to get Abby into it. She was reluctant. Digging deeper by talking about things revealed that everyone is now reminded somewhat about Ollie being diagnosed this time of year and having those first rounds of chemo in the weeks before, during and after the holidays. No matter how far away we get from active treatment, there are constant reminders of what we went through in those early days. 

[Photo description: Ollie wears an elf hat and Hope wears reindeer antlers while a roaring fire appears on the TV screen behind them.]

We talked about reclaiming Christmas and trying to think more about how grateful we are that we're all together and he's well instead. It hasn't been easy and there have been arguments and tears to get past this PTSD, but we're getting there. Abby and Ollie are now getting excited that Christmas is almost here as evidenced by them trying to guess what their gifts under the tree are. 

[Photo description: Ollie adds coloured bulbs to the ceramic Christmas tree that was my grandmother's as we decorated for the holidays.]

When he has his moments, Ollie has this incredible way of being able to talk about how he feels when he's feeling big angry or sad feelings and then to just recover quickly after hugging it out and appreciating the good moments that follow. Hope helps him a lot with this process. He calls her especially when he is sad after his anger has dissipated and he needs to move from sadness to acceptance to readiness to be happy again. He just hugs her and within moments he feels ready to face whatever the world throws at him next. As his mama my level of gratitude and love for this gorgeous and sweet-natured canine (who honestly seems to think she's human) knows no bounds. She spends most of her days very close to me at home. Mario laughs that I was the one who didn't want a dog before Ollie went blind and she is now super attached to me and I to her. 

[Photo description: Ollie hugs Hope while sitting on the back of the CNIB Christmas Float before the Carleton Place Christmas Parade on November 27, 2021.]

So it was our great pleasure to be invited to participate in the Carleton Place Christmas Parade with the CNIB Guide Dogs Program and show our gratitude for being part of something so life changing for us all. Ollie was so excited to be part of it and showed incredible patience while waiting for the parade to begin. Hope was so well-behaved despite all of the distractions, especially with so many other dogs around. 

We met several other volunteers who boarded Hope during her time at the CNIB Canine Training Centre. They were all overjoyed to see her and commented on how wonderful she looked, how well-behaved she was, and how well Ollie was doing with her. They are all incredibly warm and kind people who open their hearts and homes to help train guide dogs for blind and low vision people. It's incredibly hard for them to love these dogs and then let them go, but they do it selflessly to make lives like Ollie's better.

[Photo description: The CNIB float for the Carleton Place Christmas Parade is covered in Christmas lights and featured a blow up Snoopy riding a scooter and a decorated Christmas tree pulled by a yellow, white and black CNIB Guide Dogs van. Dawn, Ollie (in orange coat) and Hope are sitting on the float with the program lead of the CNIB Buddy Dog/Ambassador Dog Program, Buddy Dog duo Connor and June with mom Julie and other CNIB volunteers. CNIB Dog Trainers and Guide Dogs in training walked behind the float. Photo courtesy of Allison Noseworthy Warren]

The parade was incredibly well attended with approximately 5,000 people lining the streets. On the one hand this made me grateful to be on the float safely isolated from the masses, but on the other I felt so grateful for this little bit of normal for everyone. Pretty exciting for a 9 year old to be in a parade and we hope to be invited to do it again in future!

[Photo description: Ollie is assisted by Mario and Skateboarding Instructor Jordan as he does his first blind standing ride down a half pipe at The Yard.]

I haven't written that separate blog post about Ollie skateboarding yet, but he's making great progress and it's fun to watch him do something he loves so much and I love the respect that other kids at the skate park show him when they realize he's doing it blind.

[Photo description: Ollie and his skateboarding instructor Jordan are interviewed by Denise Fung of CBC Radio at The Yard.]

 CBC Radio taped an interview at The Yard with him and Jordan yesterday, so listen this week for him on Ottawa Morning! 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Last spring, Make-A-Wish Eastern Ontario asked if Ollie would be willing to be part of the 24 Days of Wishes. Each day in December leading up to Christmas, a Wish kid is featured on Ottawa's CTV News to encourage people to donate to help make Wishes come true for other critically ill children in 2022. 

[Photo description: Oliver was Day 10 of Make-A-Wish Eastern Ontario's 24 Days of Wishes revealed on CTV News Ottawa on December 10]

Ollie's Door Day was December 10th and you can watch the CTV News segment on him here. We remain so thankful for the Wish that he was granted in March 2021 to have an epic playroom and he has literally used it EVERY day since then. It really is the Wish that keeps on giving and he helped the sponsor of his Wish, eQ Homes to make a video to encourage others to help them to Wish It Forward to help another deserving kid in 2022. They just posted today that they met their $10,000 goal to make this happen, so we continue to be grateful to eQ Homes and their supporters who have helped to inspire kids like Ollie with critical illnesses to keep going through all of the hard stuff to get their Wishes.

[Photo description: Ollie gets his first COVID-19 vaccine from a CHEO nurse while stuffie Llama Llama Blue Pajamas is hugged for courage. This red and white shirt reads, " Be a changeable - #sgeochangemaker - St. George Catholic School"] 

On November 28, 2021, Ollie was psyched to finally get his first COVID-19 vaccine at CHEO! Honestly when CHEO called me to schedule it I was teary and when he got it I breathed a deep breath of relief. It's not enough yet and he's scheduled to get his second in January and will get a third after that given his transplant makes him higher risk for COVID, but it is an incredible first step towards all of us feeling less anxiety about him being out in public, including school. Ollie felt no pain (my arm after my booster last week hurt for 4 days, but he says he felt nothing!) and aside from being a bit more tired for 24 hours and asking to go to bed early, he had no side effects. 

I have tried to explain to the naysayers online who cry that parents are "torturing" their children by vaccinating them with an "untested" vaccine that they have no idea what really torturing your child is like. That putting chemo, radiation and truly untested in children drugs into their little bodies to save their lives is torture for them and for you as the parent. And all are in the interest of saving their lives. Just like this COVID vaccine is for Ollie. That both of my very bright and aware children BEGGED to get this vaccine in the interest of protecting each other and trying to live a more normal, less scary life. That if my then 12 year old daughter could legally consent (and she was physically and mentally assessed to ensure that she was okay to consent) to give her stem cells to save her brother's life, she and others like her are very capable of deciding to get a vaccine.  

A few of Ollie's friends who were nervous about the vaccine or scared of needles told us that despite this they were going to get the vaccine anyways because they could be brave like Ollie. And then they sent us messages celebrating that they had done it! Again and again people help us and amaze us with their kindness. To-date in Ottawa 50% of eligible kids have been vaccinated in the first three weeks of vaccination clinics and we are thrilled to live in this community where people take care of each other. 

[Photo description: Ollie sits in an pathology exam chair in an exam room at the Eye Centre at The Ottawa Hospital - Riverside Campus waiting to be examined by Dr. Dollin]

On December 1st, Ollie had another appointment with his retina specialist, Dr. Dollin at The Ottawa Hospital at the Riverside Campus Eye Centre. First time ever for us at Riverside! Have to say, that we preferred it! Smaller hospital and less people at the clinic there as well as more modern facilities! Dr. Dollin verified that the pressure in his eyes is manageable with drops, but that ultimately we'd likely eventually have to do at least the lasering of his eyes to correct the pressure issues and stop unwanted blood vessels from growing and admitted that waiting to see if the blood from his vitreous detachment would dissipate on its own did not work. So the only way to clear out the blood pool and try to recover any of Ollie's peripheral vision in his right eye was to do the vitrectomy surgery. At my encouragement he and Dr. O'Connor at CHEO confirmed later that day that Ollie would have the surgery and to my surprise scheduled him for December 15th (tomorrow). 

He's actually having both surgeries (vitrectomy and lasering) on the right eye. It's just day surgery with the prep and recovery after taking longer than the 1 hour 45 minute surgery itself. He'll be sedated and they have promised they'll manage any pain he might have, but said generally there is more discomfort like a scratchy feeling than pain. Recovery is about 2 weeks, so it's good that we'd just planned a quiet Christmas with just us this year. Ollie is upbeat about the surgery and hopeful that it will allow him to recover a bit more vision. He knows better than anyone that there are no guarantees when it comes to medical procedures and the pursuit of wellness, but despite everything remains his hopeful, positive self and believes it will be worth it. We all feel confident, but would totally appreciate your prayers anyways that all goes well and is easy for Ollie. I'll try to at least write a short update when I can.

In the meantime, we hope that you are having a wonderful holiday season despite COVID-19 and the cases rising again. We all know too well now that while there is nothing like being together in person, there are many safe ways to stay connected to those we love whether near or far. Please get your COVID-19 booster when you are eligible to keep yourself as safe as possible and to help us to keep Ollie and other vulnerable people like him safer.  

Clearing Scans, Passing Tests and Accessibility Stories

[Photo description: Mario, Abby, Ollie and Dawn pose in their backyard wearing huge smiles and holding Ollie's hands as they surround him with love. Photos were done as part of the annual #PhotosForPhoebe event in support of the Phoebe Rose Rocks Foundation that supported Ollie and family during his stem cell transplant. Photo credit to Anne-Marie Bouchard Photography who donated her time and talent in return for donations to the Phoebe Rose Rocks Foundation]

If you've been hesitant to ask us about the results of scans and waiting for us to share, so sorry to keep you hanging! The MRI got delayed by a week due to someone else's emergency. Ollie was upset by the delay at first, but I reminded him that we got bumped because his scans are just routine and that there have been times when he was the urgent case and we likely bumped other people to accommodate him at those times. 

We did have the CT as planned and the doctor was kind enough to call me after I sent an apologetic email on the third day when we hadn't heard, that I was having bad dreams that she was trying to reach me and couldn't and I couldn't stand not knowing anymore. She called and asked me how I was and I said, "I'm okay." and she teased me saying I obviously was not because she just got my email and knew I was stressing out! 😄 She confirmed that the CT was clear and unchanged from a year ago! That helped to ease my anxiety quite a bit, although I knew that the MRI would scan his brain where most of his persistent relapses have been.

[Photo description: Ollie wears a mask and holds a sprayer from a garden hose on Hope 

who looks unimpressed as he gives her a bath at our local Pet Valu DIY pet wash]

He had his MRI three weeks ago and it was anxiety ridden for both of us. I sat watching for an hour and thirty minutes with no clock in the room, no phone and nothing to do but think and fixate. So I prayed and took a lot of deep breaths. Pretty much for the entire time. I prayed for clear scans and patience and healing for us all. I prayed for our army of kind people who came through for us in every way. I prayed for all families admitted to CHEO at that time including our little friend Isaac who was just starting his last admission upstairs on 4 North. I prayed for every kid we have come to know or have known for too short a time before they were taken too young during our own two year journey. I prayed for those brave kids and their families who unfairly battled the unthinkable and couldn't beat it and I also begged God for those that have made it so far to be well. For their families to know joy and normalcy again. And for my son never to have to ever again face death during my lifetime and well beyond.

[Photo description: Ollie sits at the kitchen table making a homemade 

pepperoni and green olive pizza.]

Ollie was great until they had to put his needle in to inject the contrast. He always hates that part. The technicians were as always terrific, but they did end up having to do extra scans of his back, so that took longer and by the end he was hollering at them to get him out before he lost it. By then he was tired, hungry, frustrated and his ears were hurting from the headphones. I honestly don't know how we did these unsedated before when he was on steroids all the time and was angry and impatient! He is a total wonder!  

[Photo description: Ollie sits building Lego mini figures at CHEO while waiting for his CT scan and drinking the contrast. He has to drink 1 cup every half hour and 4 cups in total, so it is a two hour ordeal.]

We found out two weeks ago during his checkup with Dr. Abbott that the MRI shows there is no evidence of disease, so remains cancer free! Thanks be to God! 

The MRI did still show that some inflammation remains in his optic nerves, and it's been 21 months since he went blind! Thankfully they did get a clearer picture of where the damage is including the detached retina on the left that we already knew about and the tear on the right eye that the retina specialist at The Ottawa Hospital suspected. Ollie also had eye ultrasounds and a check in with this specialist two weeks ago, so this should help him to decide what surgery Ollie will need on his eyes in the coming months to clear out that blood from the detachment and the tear, to fix these issues and stop the growth of the new blood vessels from strangling his eyes. We hope to know more in a few weeks. 

The MRI also shows further deterioration in his lower spine and right hip, but again we are being followed by the endocrinologist and bone specialist who have done other scans this summer and are monitoring this. They'll be sent his MRI and consulted to see if we stay the course or may need to consider treatment (injections) to help increase his bone density. 

[Photo description: Ollie wears a mask, a hospital gown and hospital pants, sitting in CHEO imaging with his white cane while waiting for his latest MRI]

We also did a special blood test called the Minimal Residual Disease (MRD) test. MRD refers to cancer cells remaining after treatment that can't be detected by other scans and tests. These cells have the potential to come back and cause relapse.. I had heard of this through other ALCL parents in the UK and Europe and asked our oncologist to see if we could it, too. As with most medical tests it is not an absolute answer. When looked at in concert with imaging scans like an MRI and CT, it can be a marker for whether additional treatment is needed at this time or not. 

Dr. Abbott as always listened to my request to do this even though it isn't typically done in North America very often or in very many places. She took the information that I gave her about other experts in the U.S., Germany and England who do this, contacted them and arranged for Ollie's sample to be sent to and analyzed in Germany. They agreed to analyze his sample and provide results for free and he became part of an ALCL study there as well. We thought we'd have to pay out of pocket to have the sample couriered to Germany, but Dr. Abbott asked OHIP and they agreed to pay for the sample to be sent! It just reinforces what I've learned over the past two years - if you don't ask, you don't get. 

 

I got a brief call from Dr. Abbott during one of her exceptionally busy days this week and she confirmed that his test result was negative. Meaning no evidence of any remaining cancer cells in his body! This is great news, but as always we remain cautiously optimistic as it is no guarantee that if we did the test again in future it wouldn't be positive. It also causes us to have to think about what we do next as Ollie remains on an ALK inhibitor drug and at some point we need to decide if we take him off and see if the transplant and the drug have been enough to kick cancer out for good, if we stay the course and remain on the drug for the full planned 2 years or potentially reduce his current dosage to see if we can reduce his weight gain, water retention and ease some of the anxiety that the drug sometimes causes for him. 

We have friends in the UK who recently took their child off of the drug and there was a relapse within a few months. That said their chimerism never reached 100% after transplant with an unrelated donor. We also know another family with a child in the U.S.A. whose child went off of the drug 6 months ago after over a year post transplant with an unrelated donor and 100% chimerism and they are doing great. It is so difficult to be making rational decisions without adequate data and case studies to do so. Few understand what it is really like to be making life or death decisions for their child. You'd think we would be getting pretty good at it, but it never gets easier. We'll be having another discussion with Dr. Abbott soon to determine the way forward. As always, we will share more info when we can. 

[Photo description: Ollie stands in front of the skate park at The Yard wearing a mask, a helmet and safety pads while holding his white cane and his skateboard]

In other (less stressful) news, I posted on social media recently about Ollie starting skateboarding lessons at The Yard and how the owner was keen to learn from Calgary's ALT Route accessible skate park project to help find safe ways for Ollie to skateboard, too. Anthony and Jordan at the Yard are good humans who just wanted to help give a blind cancer/stem cell transplant survivor kid a chance to do again what he once loved. 

I'm going to write a separate blog piece on how they're doing this with him soon, so stay tuned! For now you can imagine how happy this makes Ollie and how incredible it is for all involved to see him get back to something he is so passionate and fearless about. 

You should also check out this awesome documentary about ALT Route! 

[Photo description: Ollie and Hope wearing their CNIB gear visit the CNIB Canine Centre and greet an employee with the Canadian Animal Blood Bank.]

Recently Hope became another hero in our family (or perhaps just a bigger one since we already thought she was a hero for all she does to help Ollie) when she donated blood at a clinic organized by the CNIB Guide Dogs team at the CNIB Canine Centre in Carleton Place to help out the Canadian Animal Blood Bank. You never think about dogs needing blood in emergency situations, but they do, too and due to COVID their bank has been nearly empty until donor clinics have once again been allowed. COVID protocols were followed so we didn't get to be with her during her donation, but Miriam and Lucie at the Guide Dogs program were there to help her through it and she was so excited to see them again! She did great, donated an entire pint and is a universal donor! We are so proud of her! She also had a fun puppy playdate after as our fellow Buddy Dog duo Connor and June were also there at the same time. 

[Photo description: Ollie holds his dog whistle while Buddy Dog Hope sits at his feet and Buddy Dog June stands beside her waiting for a command.]

She and Ollie have also been invited to be part of the CNIB's float for the Carleton Place Christmas Parade on November 27th! Ollie is pretty excited about this, especially since it looks like we'll get to meet Ray (Hope's brother) and his handler at the parade! 

Hope and Ollie now have their own Instagram account (@cnib_ollies_hope) where we post shorter updates more frequently if you want to follow along there as well!

[Photo description: Abby sits on the sofa while a boom microphone hovers in front and above her during her interview for the new AMI-TV series We Are One]

We also agreed last spring to share Ollie's story of becoming blind with the Accessible Media Inc. (AMI-TV) team to be profiled in an episode of their new series, We Are One. Originally we were going to shoot it this summer, but COVID as usual delayed things and so we shot it just a couple of weeks ago. Interviews were done with us at home observing COVID protocols as we knew all crew members were double vaccinated. I think that the interviews are among the best and most honest we have ever given. 

 

[Photo description: Ollie and his skateboarding instructor Jordan walk up a ramp in the skate park towards a sign on the wall that reads, "The Yard" while the videographer and sound technician capture the moment.]

Chris Vallee is the host of the show and we "met" him online last spring because his story of overcoming an eating disorder as a teen thanks to a CHEO program was also profiled as part of the 2021 CHEO Telethon which Ollie was also featured in. He put us at ease right away and I felt grateful to have another CHEO success story telling Ollie's. Abby in particular responded so well to Chris. I watched her interview and was moved to tears so many times by the raw honesty that she displayed. As a teen now it's harder to be publicly vulnerable and I had given her permission and warned them that she may opt not to answer some of their questions if she preferred not to. As usual my children's strength left me in awe as she answered every question thoughtfully and purely as her best self. When Abby was done and she'd gone back up to her room to return to her teen life chatting online with friends, both the producer and the sound technician commented on how moving her interview was (and they see a lot of interviews). The crew was awesome and the sound technician later told me how much he loves working for AMI because of the compelling stories they tell and the amazing people he gets to meet like us! 

[Photo description: Ollie is second from the right with the ball while playing road hockey with friends Magnum, Will, James, Elias and Lewis in the school yard. The boom microphone can be seen overhead in the foreground.]

As part of the b-roll (fancy production speak for background images and video that they use as visuals while they use your voice from your interview over them) that we shot we took them to The Yard for one of Ollie' s skateboarding lessons, got some of Ollie's buddies from school together to play a game of road hockey (using his audible ball as he does at school) and they filmed part of one of Ollie's chess lessons with Josh. 

[Photo description: Ollie and Josh play chess masked in his playroom while the videographer and sound technician capture it.]

Abby, Mario and I are all doing well and keeping busy. Flu shots will be done for all of us as of tomorrow when Abby gets hers. It's heartening to see people going out and getting them more eagerly this year as a result of a heightened awareness of the need to take care of each other and trying to keep each other well and staying at work and school. 

As I reflect that on this day two years ago Ollie had his biopsy that would finally reveal what the bump was on November 19th, 2019, I am still brought to tears often by how much our little family has been through. Despite everything we are mostly happy, healthy and together. I am eternally grateful that we've made it thus far and so proud of all of us for working through it.