2022 - A Year of Giving, Growth, and Gratitude

Happy New Year! I actually started writing this update weeks ago and then suddenly Christmas activities took over and I'm just now able to get back to it! It's been a lovely and quiet Christmas the past week and allowed for lots of rest and reflection on 2022.

Much like all of 2022, the past two months since I last updated the blog have been so busy! So much so that I didn't realize how much time has passed! Happy to report that other than minor colds and a sinus infection for me, we've all been well and normalcy is wonderful.

[Photo Description: Ollie on skates and wearing a hockey helmet and Ottawa 67s jersey holds the hands of his sighted guide Emily on his first day of Ottawa 67s Blind Hockey/Canadian Blind Hockey Association league.]

This fall Ollie started hockey with the Ottawa 67s/Canadian Blind Hockey Association. I wasn't sure how he'd like it this year even though he was sure he wanted to try it. Last year the only time we got him up on skates he was less than thrilled and mad at me for making him shuffle around the whole rink at least once before taking the skates off. Maybe it's that a bunch of his sighted buddies at school play hockey in leagues and talk about it all the time, or that some of his friends with vision loss have been raving about the program all summer when they played Beep Kickball together and they encouraged him to come out and try it this fall. Either way he couldn't wait for the season to start.

[Photo Description: In his second week, Ollie stands on the ice on skates wearing his Ottawa 67s jersey and a hockey helmet, holding a hockey stick with his sighted guide Emily (from Ottawa's Able2) giving him instruction.]

The first practice session was to show the newbies basics and how to skate. Ollie had been a decent skater before and had even taken lessons when he was sighted. Ironically one of the last activities that he did sighted was to go skating at one of the local park rinks with me one day in January 2020 between rounds of chemo when he was feeling well enough and cooped up. He was delighted that day to push the shovel around and clear the snow, then play a bit of hockey while we had the rink to ourselves because it was a weekday. Everyone else was busy with their regular work and school lives while we were at a loss for something to do when there were no medical appointments.

[Photo Description: Ollie stands on the ice wearing and a hockey helmet at Fisher Park, holding a hockey stick in January 2020 just after round 2 of chemo and before relapsing and going blind less than 2 weeks later.]

In October, during his first week of blind hockey, Ollie noted that the new kids suffered through the basics of learning to play with the help of one-on-one sighted guides, while those who had done it before got to play actual hockey at the other end of the arena with a couple of the coaches. By week two he was determined he'd quickly join the returning kids playing hockey. Each of the four weeks since Ollie has progressed with surprising speed and many of the other parents have commented on it and been amused by how determined he is to get better at it. We're not that surprised since we know very well how committed this kid is to getting better in every way. 

It helps that the coaches and sighted guides are all incredibly dedicated and talented volunteers. The coordinators of the program, Wendy and Rob are the parents of the Executive Director of the Canadian Blind Hockey Association and do this because of their son's contagious passion for offering blind hockey across the country. The skating coach, Shelley is one of the most elite figure skating coaches in Canada and has been the Skating Development Consultant for the Ottawa Senators for more than a handful of years! Coach JoJo works with the Ottawa 67s and sighted guides like Emily (who is the Executive Director of Able2 that supported the Beep Kickball that Ollie played with the Miracle League of Ottawa last summer) come out to help each week, plus lend equipment when needed. 

[Photo Description: Ollie tries on his new to him hockey equipment courtesy of the Wright Family with his Maple Leafs jersey to tease them (they're Habs fans! 😆)].

Since Ollie had never played hockey, we were uncertain if he'd like it, so appreciated that he could try it for a few weeks without us having to buy any equipment (other than providing his skates and helmet). Plus, they often get donations of gently used equipment so that families don't have to spend a lot to get started. When we saw that Ollie was clearly psyched to do it this year, our dear friends the Wright family gave Ollie everything he needed to get started as their two boys play hockey and had outgrown a bunch of stuff they were planning on donating somewhere anyways! This allows us to pay for just his ice time for the season and we'll make a donation to the Canadian Blind Hockey Association in 2023 to pay it forward so other visually impaired kids can play at low or no cost, too.

[Photo Description: Dawn, Ollie and Mario sitting at the Ottawa Senators Hockey Fights Cancer game while Ollie shows off his new purple and white jersey. All three are masked.]

His new Ottawa 67s Blind Hockey jersey has been ordered (the first they gave him was too small once he got all the equipment on! 😆). So in the meantime, he happily wears the "real" Ottawa 67s jersey that the team gave him last spring to replace the original one that they gave him (he outgrew the first one) when Gabriel Pizza made the trip to Toronto to deliver the famous Olive pizzas (later named the Ollie's Pizza on his honour and still on their menu). Or his latest acquisition, which is the Hockey Fights Cancer Ottawa Senators jersey, which he got at their Hockey Fights Cancer game that we attended with Kids Kicking Cancer last month. He joked that it's the only way we'd get him into a Sens jersey! 😆

[Photo Description: Ollie, wearing his hockey gear and his Hockey Fights Cancer jersey works on stick handling with Coach JoJo during a hockey practice last month.]

On October 29th we were excited to be included in the Ottawa REDBLACKS CFL game when Gabriel Pizza asked Ollie to do the coin toss (as the namesake of their Ollie's Pizza) with their founder, Mr. George Hanna. The whole family was included in the festivities, with Ollie doing the coin toss with the players, Mr. Hanna and the Gabriel Pizza mascot, Chef Gabe. 

[Photo Description: Ollie stands on the sidelines of the Ottawa REDBLACKS CFL game, arm in arm with Gabriel Pizza's mascot Chef Gabe, while holding his mobility cane.]

Game day was super exciting, and the whole family (including Hope) got to go down to the field level for the coin toss. I accompanied Ollie onto the sidelines and he was almost vibrating with energy as we talked to the Hanna Family and the Ottawa REDBLACKS staff while we waited for the big moment. From fireworks as the players came onto the field to the cheer team, it was non-stop action with me trying to explain it all to Ollie quickly and accurately as he listened to it all happening rapidly.

[Photo Description: Ollie and Dawn on the sidelines with Chef Gabe, George Hanna and Rolla Hanna. Photo courtesy of Sharon Higgins from Gabriel Pizza.]

I guided him on to the field and stepped back while Ollie had his moment with the team. It happened pretty fast and Mr. Hanna did the actual coin toss while Ollie and mascot Chef Gabe stood nearby. On our way back to the sidelines I was delighted to see my old friend and former Ottawa Gee-Gees colleague/photographer Andre Ringuette of Freestyle Photography as he was shooting the game! He greeted us both (he's also a friend on Facebook and knows Ollie's story) and took an amazing shot of the two of us. 

When he sent it to me, he told me it was the "shot of the week" and I have to admit it's one of my favourite ever taken of the two of us. I love this shot because my friend who is an amazing photographer (he also shoots for the Ottawa Senators, has been part of the Canadian delegation to shoot several Olympic Games, is the official Canadian Tire Centre photographer and has photographed SO many famous music groups and artists, etc.) took it, but also because although Ollie has my arm and I am supposed to be guiding him, you can clearly see he is actually leading me boldly with his mobility cane and no fear. Much like he has throughout his cancer, stem cell transplant and transition to blindness journey. People think I am guiding him through it all, but he's really always been intuitively leading me to help him. 

[Photo Description: Ollie and Dawn walk off the field after the Ottawa REDBLACKS coin toss. The North side stands are behind them and although Ollie is holding Dawn's arm, he is clearly leading while walking slightly ahead of her and using his mobility cane. Photo credit to Andre Ringuette, Freestyle Photography.]

After the coin toss, the Hanna Family kindly invited us up to their suite to watch the game and eat with them. It was lovely to get to know Mr. George Hanna, his daughter Rolla (who also manages the Gabriel Pizza restaurant on Metcalfe in downtown Ottawa where I used to go for lunch pre-cancer and pre-COVID) and her teen son/his grandson Gabriel (born long AFTER the business was started) and we had a lot of fun, too! 

[Photo Description: White letters against the sloped green hill in the REDBLACKS end zone spell out, "OLLIEWOOD".]

A few days later a friend sent me a photo that he took at another event at Lansdowne the day after the game. In the end zone someone had put up letters against the sloped green hill that said, "OLLIEWOOD". We checked against photos from the game the day before and they hadn't been there then! We actually think it was put up for Athletico Ottawa player Ollie Bassett,  but this made Ollie laugh in delight to think that someone might have done this in homage to him! 😆

[Photo Description: Ollie sits on a gurney in CHEO's Medical Day Unit (MDU)  with Hope on Halloween. Ollie is wearing a jack-o-lantern shirt and a KN95 mask. Hope is wearing her CNIB Buddy Dog vest and holding a stuffed pumpkin that Ollie got as a gift in a loot bag and gave to her.]

On Halloween we started our day at CHEO for bloodwork, a check-up and his final re-vaccinations (Diptheria, Tuberculosis and Pertussis - ironically it was Tuberculosis that they were convinced he had before he was diagnosed with cancer, even though he'd been vaccinated for it) after transplant. Hope came with us again and made Ollie even calmer. At one point when Nurse Julie was trying to clean his arm to prepare for bloodwork, Hope kept trying to be helpful and comforting and lick him where Julie had already cleaned, so we had to hold her so we could do it without a contaminated field! 😆 

Later Dr. Brianna (who was also dressed up as a baseball player for Halloween) helped Ollie to find and listen to Hope's heartbeat with her stethoscope. Talk about full service at CHEO! 😆

[Photo Description: Ollie and Hope sit on the gurney in MDU and he listens to Hope's heartbeat on Dr. Brianna's stethoscope as she holds it in place.]

Ollie's scans when we last updated this blog had been clear, but we were still waiting on results from his minimal residual disease (MRD) test that we'd sent to Germany again to be part of a relapse study for Anaplastic Large Cell Lymphoma (ALCL). Thankfully shortly thereafter we got the call that the test was once again negative!  This was incredible news because it meant that we could keep him off of the Lorlatinib as the plan was always to re-start immediately if the test was positive and showed any sign of that cell still mutating and causing the cancer. 

[Photo Description: Hope licks Ollie as Nurse Julie begins to get him ready to have his bloodwork done in CHEO's MDU.] 

So the only ongoing issue besides the minor osteopenia in his lower back and hip (which his recent scans showed had actually improved again marginally), is his thyroid. Since September we've been playing with his dose of synthetic thyroid medicine to try to get to the right level. Every month he's had to go back for bloodwork to check the level again and each month it's still been too high, showing that he is now experiencing hyperthyroidism instead of the hypothyroidism he has had since transplant. 

Last month when they bumped him down for the third time to the lowest dose he's ever been on (50 mg), I asked the endocrinologist if it were possible that his thyroid is now actually functioning properly again and maybe he doesn't need the med anymore? I suggested perhaps the Lorlatinib that had been surpressing his immune system (as soon as we took him off his white blood cell count, red blood cell count, neutrophils, etc. shot up again, almost doubling even though his levels on Lorlatinib had been healthy/within normal ranges), has also been suppressing his thyroid function and now that he was no longer on the drug perhaps it was working again? She acknowledged that this was possible, but we'd still have to take the latest dose for a month and see what the bloodwork shows as it can take 4-6 weeks for the dose change to take effect. 

We'll go again this week to check, but his appetite is still very low even though the fatigue, sensitivity and outbursts have disappeared, and this makes me think we are still giving him too much med and he may not need it at all. We'll keep you posted, but my track record on predicting/analyzing this stuff has been pretty good so far.

[Photo Description: Dawn, Ollie and Hope on the CNIB Guide Dogs float for the 2022 Carleton Place Santa Parade.]

At the beginning of November, Ollie and I were invited to share his story and his transition to blindness with a university group called, Unite for Site thanks to his Kids Kicking Cancer Sensei Brian being part of the group that organizes it. It was my first time back on the University of Ottawa campus (other than at the arena where he now plays hockey, too!) in a long time and it was kind of fun to share more of my alma mater with my son. Hope came along too and the talk was well- received.

At the end of November we also once again participated in the Carleton Place Santa Parade on the CNIB Guide Dogs float. It was another beautiful night with great weather and not too cold! It was extra fun to have our friends Adam, his mom Lisa and his new Buddy Dog Henson there this year, in addition to our friends Connor, his CNIB Buddy Dog June and mom Julie. As always it was great to see the coordinator of the Buddy Dog program who gave us our Hope, Miriam. 

[Photo Description: A posting advertising Braille Night for Unite for Sight. The poster includes photos of someone reading Braille with their finger and a photo of Ollie holding up his Braille TacTiles to do math when he was in virtual school the year after transplant.]

In early December Unite for Site had us back to teach them about the basics of Braille. The event was held at the Ottawa Eye Institute just down the hall from Ollie's retina specialist's clinic and as all were welcome, we were delighted that friends Sam (who wrote the Ollie's Telescope book based on Ollie), her son Tobey, and Sensei Lyne and her husband, Luigi also came! We had a great time and Ollie was an incredibly funny and charismatic teacher. Sensei Lyne told me after that he IS teaching the world and since his vision itinerant teacher Dawne also tells me what an incredible teacher he is for the little ones, it seems maybe he is destined to be a teacher as he grows up, whether by profession or simply by passion. 

[Photo Description: Dawn and Ollie are pictured with the group that came to Braille Night behind a table with Braille materials on it. They were all excellent students!]

We recently got back our family photos that were taken during this year's #PhotosForPhoebe fundraiser for the Phoebe Rose Rocks Foundation who supported us during transplant and co-sponsored the genetic sequencing testing that helped to identify his miracle drug Lorlatinib. 

[Photo Description: Mario and Dawn hug Ollie and Abby between them in their 2022 family photos. Photo credit to Anne-Marie Bouchard.]

It was so nice to do the photos in a studio this year with photographer Anne-Marie Bouchard and to be able to meet Phoebe's mom, Jenny and her sister, Mae. As it turns out Abby knew Mae from school, but neither girl realized what they had in common beyond another friend who also volunteered to help that day. It's funny that I had also told Abby about another kid that goes to her school who had cancer (I sit on a committee with their dad) and it turns out she knew them, too and didn't realize what they had in common either. She seemed shocked that she now knew several others whose families have been affected by childhood cancer, too. The thing is cancer isolates you so much that while you're in it, you can't imagine that anyone else like you might be experiencing it, too, especially if you're a teen and think you're the only one suffering.

[Photo Description: Ollie bends down with his hands on Hope as she lies down in her halty and CNIB Buddy Dog vest. Photo credit to Anne-Marie Bouchard.]

In December Ollie and I were invited to be part of a commercial that the Canadian Cancer Society is putting together to promote the value of palliative care in hopes that the various provincial governments will increase their support across the country. We were the only pediatric cancer family to be involved and they wanted to highlight how our experience with palliative care helped Ollie to survive. This was easy because I am convinced that meeting with Sick Kids Hospital's Palliative Advanced Care Team (PACT) from the outset of his second attempt at transplant and working with them to ensure we had pain management, nutrition and psycho-social supports in place for the whole family during his transplant helped us all to get through it more easily than we expected to. Palliative isn't just about end of life care (although we have dear friends who have needed this and have seen through them the value of making children's passing as peaceful and comfortable as possible for the whole family) and we need to do more to make people understand all of it. 

[Photo Description: Ollie gets ready to do a drop-in into the bowl at The Yard during his skateboarding lesson with Jordan. The director of the Canadian Cancer Society commercial holds the camera, one of the production assistants is by his side and the boom mic can be seen in the shot.] 

So Ollie and I shot the commercial with the crew on December 8th beginning with our individual interviews at home, some b-roll of playing at home and then we took them to the Yard for Ollie's skateboarding lesson.

Ollie insisted on trying the five foot drop-in that he hadn't landed yet. He tried it twice while they are filming and took major wipe-outs, as my heart was pounding and I was holding myself back from taking him not to do it. Both Jordan and I told him he didn't have to for the camera and it didn't have to happen on that day. When we saw that he wouldn't give up, Jordan gave him a pep talk and I yelled, "I CAN DO IT! I CAN DO IT!", which is what we used to say over and over when he needed to convince himself that he could do the hardest things during cancer and stem cell transplant. He said a little prayer and told himself he could do it (he told me this later) and on the third try he nailed the drop-in with no hands and Jordan caught his hands as he descended into the bowl successfully without wiping out. 

[Photo Description: Just before successfully doing the drop-in, Ollie asks Jordan to hold his hand for a minute while he prepared mentally to do it. Jordan, as ever the best coach and teacher, didn't question it, just did what Ollie needed to feel ready.]

At the end they hugged so hard and the entire crew was wiping tears from their eyes. If they keep it in the commercial, it'll be interesting to see if others feel what a big deal it was for the blind ten year old cancer and stem cell transplant survivor to do this. I shared the story and the video on social media and there was a lot of fanfare including one of his personal heroes, pro blind skateboarder Justin Bishop sharing it on his Instagram story the next day. Ollie was very proud. 

The commercial was being shot with other adults across Canada and is expected to be released early in 2023. We'll keep you posted and share it when it is publicly available. We may just be a few seconds in it, but feel proud to be helping and I know that my grandparents (who were big Canadian Cancer Society supporters after the three times my grandpa had cancer) would be happy that we were doing what we could to help others to get better palliative care in future. 

[Photo Description: Ollie helps Mario to put the Christmas tree together.]

Ollie was sick for about 2 weeks with what we suspect was RSV, even though he still masks at school, as his school has had record absenteeism rates due to RSV and flu. As Ollie pointed out to us, kids were going to school sick (the principal corroborated at the Parent Council meeting that they were having to send a lot of sick kids home who were clearly sick before they got to school!) and he still had to take his mask off at lunch time to eat, so likely got sick that way. 

Ollie had his flu shot in October as did we all, and his most recent COVID booster in November and we tested for days when he got sick, so know it wasn't COVID, and no fever, nausea or vomiting, so not flu. Plus several of his teachers were out with RSV or it having developed into pneumonia over December. We kept him home over a week until the mucous stopped constantly making him miserable. 

Naturally that's how I got it on top of the sinus infection I'd been waiting for a virtual doctor's visit to address. I felt pretty rotten for about 6 days, but thankfully the doctor gave me antibiotics for the sinus infection, so when that cleared, the cold symptoms were much more manageable. Again, we stayed home and waited it out to ensure I was no longer contagious and actually felt human before venturing out again. It also meant we postponed some plans to see friends over the first days of the holidays until I was better after Christmas.

[Photo Description: Ollie stands slightly on tip-toe to put the star on the Christmas tree himself this year! He's getting so tall and already wears a men's size 10.5 shoe, so the bone specialist says he'll be tall despite radiation potentially compressing his spine.]

We actually had a quiet, but peaceful and happy Christmas. No family up and given I was sick and there was the crazy storm that happened the 22nd to 24th, glad all our loved ones were home safe and healthy, too. We saw a few dear friends in the days after Christmas for short visits when I was feeling better, but for the most part have just rested and recharged. It's been a really busy, but productive year.

Reflecting on all that we've accomplished, there's been so much personal growth and stability for all of us together and each of us individually. It's been the year we all finally got back to the "normal" of school and work and started to have social lives beyond social media or online chats again. 

On the cancer and blindness advocacy side, we have contributed to the following (many with Ollie being directly involved and others on my own based on his story) in 2022:

- 15 Research Studies related to Pediatric Cancer, COVID-19 in immuno-compromised families and Accessibility

- Member of 3 Parent Advisory Committees for Oncology/Lymphoma, and 2 Parent Advisory Committees and 1 Board of Directors for Blindness/Accessibility 

- Shot a commercial for cancer advocacy

- Had a book written about Ollie and a book signing that raised money for CHEO

- Held a Braille Night to teach people about Braille 

- Launched the CHEO Dream Home Lottery

- 11 media interviews 

- Wrote 11 blog posts and countless social media posts related to Ollie's status, cancer, it's side effects and blindness

- Made a handful of presentations on Ollie's story and lessons learned to various organizations as requested to raise awareness

- Participated in 6 fundraisers for the various charities who have helped us

- Donated blood 4 times (every 84 days as allowed)

So we're feeling pretty great about how we've paid it forward this year, recognizing that I didn't work at all the first three months, worked part time the second the months and full-time the last 6, so it's unlikely that we'd ever have this much time again to do so much!  We have a few new commitments lined up for 2023 including work to help the new Canadian Pediatric Cancer Consortium and Leukemia and Lymphoma of Canada to revamp their programs for children and youth, in addition to some of the ongoing advisory roles. 

People often ask me where I find the time or energy, but it is literally a labour of love, has helped me to heal and find meaning in the hardships that we endured, and frankly feeds my soul so much more than watching TV in my free time would! I plan to take it a bit easier in 2023 to see what else is possible for us, but Ollie and I agree that if we're asked to help and we feel we can, we will. We respect as well that Mario and Abby have needed to take a step back and do less this year so that they can move forward in their own ways, so we do it on our own these days. 

So 2022 was extraordinary in all the best ways for us and we hope and pray that 2023 will continue to be one of happiness, healing and health. Wishing all of you so much joy in 2023! Thanks for sticking with us.

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.  

Christmas Bliss and Blessings

It's been two whole weeks since I've written a post! This is partly because things were so busy with the holidays and partly because I was trying something my therapist suggested...to give myself time away from feeling like I SHOULD do something and to focus on things I WANT to do. That's not to say that I got to toss aside all of the household chores, disciplining the kids or anything else I should do, but rather that when I had rare "free" time that I made choices about doing things (or not doing anything) to give my body and my mind a rest.

It's been hard as I am a person who likes to get things done and am not very good at lazing about. I hate feeling that things are undone. These two weeks have been good for me to confirm that I missed writing and need to be writing in some way to feel right. I did take advantage of the time to recharge a bit, especially since the kids finished online school. I've read books, watched tv and movies (something I might do a couple times a week for about an hour normally), talked to friends and family and played board games with the family. 

It was good for me, ultimately, especially since one of the MUSTS in recent weeks has been dealing with my claims for Employment Insurance (EI) and Long-term Disability (LTD). My caregiver EI ran out on November 1st. Honestly when I applied back in February, our Pediatric Oncology Group of Ontario (POGO) Interlink Nurse did most of the work filling out forms for me and I just signed them. Ollie had just relapsed in his brain, gone blind and been in the ICU. I am certain the Nurse explained EI to me including the 35 weeks it lasted, but I didn't have the bandwidth to process anything else at that time. It was only in October when I started counting weeks that I realized my EI was about to expire. So I sought the advice of Service Canada about what to do next. They recommended I apply for Compassionate Care EI since Ollie's post-stem cell transplant period qualified him as still being "critically ill" and a time when I must be off with him. They also said my LTD claim would likely take a while and applying simultaneously in hopes I'll get at least one was wise. They told me I can always cancel and/or pay back the EI. 

So that's what I did and I got a letter on November 30th saying I'd been approved for EI, but no money has come yet and my online account says it's still "Under Review". Sigh. I have been trying to get through by phone for over a week to no avail. The last time I spoke to Service Canada they were supposed to send me a new online access code which never arrived, so I can't even try to see if I need to submit a report as it was unclear if I'll even need to do this. The irony is that I used to work for the department that is responsible for all of this. I know they're overrun thanks to COVID and I am grateful for their work, just frustrated as I know many Canadians must be right now.

And then there's my LTD claim. After weeks and weeks of filling out forms, meeting with my doctor online, coordinating with my department's HR advisor and the insurance company, they finally have started my claim. I got a call from them last week. They wondered why I hadn't applied back at the end of February when my sick leave ran out. I explained that I actually started the process to apply for this back in March when I was unbelievably stressed after Ollie's relapse. 

But suddenly Ollie was in remission and COVID was happening. I had to take Abby to Toronto for testing for her stem cell donation for Ollie and then we packed up our life and moved the family to Toronto for his transplant only to have him relapse two weeks later. We waited in agony, in and out of hospital due to fevers. Came back to Ottawa for radiation and a new drug. Suddenly in remission and back to Toronto for stem cell transplant. When we got back in September we had online schooling, physio, blind cane practice, doing our income taxes so CRA wouldn't stop sending the child benefit money we actually really need right now (funny because it was a pittance when I was working), and oh yeah - dealing with anxiety and mental health issues after our son nearly died this year. No biggie.

As a public servant I am well used to administration and bureaucracy and normally know how to navigate it, but with my anxiety already high these days as I deal with post-cancer feelings, I feel ill-equipped to do this and it increases my stress. As I explained to the insurance company, I am well familiar with policy since I work in it for a living, but even a policy needs to be interpreted and can't cover every situation. Sorry that I missed the 90 days deadline after my sick leave ran out to apply for a benefit I have paid for as a public servant for 16 years. Perhaps I should have worried more about your process than my son's cancer and stem cell transplant?! Unbelievable. 

Anyways, this all just makes me more grateful for the kindness of friends, family and even perfect strangers this Christmas. While we have access to a Line of Credit, and are doing okay as we wait for something to work out, people's incredible generosity continues. Family members sent Christmas money to buy the kids whatever they wanted. A thoughtful friend who is a cancer survivor himself and remembers what it was like when you get through cancer and everything seems great, but you can't work and have no money contacted me and gave us a donation from his fantasy sports pool because each year they sponsor a family or a charity in need. People have constantly and continuously showed up and supported us throughout 2020. I'll tell you more about this in a minute...

School and Kids Kicking Cancer (Karate) wrapped up for the kids with virtual dance parties. Ollie was thrilled as that's his jam. This kid adores music and dancing. He was so happy to be able to participate this year. Reminded me of his amazing school including him virtually in their Christmas pageant last year. Ironically all Christmas activities this year were virtual for all kids. 

Ollie had his last pre-holidays visit at CHEO on December 21st. They checked his cortisol levels again to see if we can remove that last "stress dose" of hydrocortisone (thankfully we haven't had to use it as no fever or vomiting to-date). No results yet, but everything else looks amazing. His blood counts are all normal. His hip MRI showed minor bone density issues, but as he's not in pain and didn't break anything failing down the stairs weeks ago, they feel confident waiting to see if his body will repair itself as it can at his age. His oncologist/post-transplant doctor marvels at how well he's doing. We are truly blessed.

Last week, Ollie showed interest again in trying a few Nintendo Switch hands he hasn't been able to play since he went blind. Daddy sat with him and narrated the entire game so Ollie could move through it and picture it. Abby tried to help him cook something last week and realized how difficult it is to narrate and explain everything we take for granted when we can see. Ollie's karate sensei dropped off activity bags and told me how Ollie is making them better teachers. He's making us all better teachers and communicators.

Overall we're just thrilled to be home together this year, not to have cancer or the next round of chemo hanging over our heads. 

We've had lovely pre-Christmas distanced visits from so many dear friends and our neighbours bringing us treats. We remain in awe of how people continue to think of us and love us even now that cancer has left the building.

Our actual Christmas was quiet, but mostly lovely. Christmas Eve we watched movies and mass online.

The kids were happy with their gifts and Mario and I bought a Roomba for each other with money from my parents to make our daily load a little lighter. 

Christmas was quieter with no family here, but we had everything we needed. 

Health, happiness and home.

Predictably Ollie got more Beyblades. I know what you're thinking...are there any LEFT for him to collect?! Sadly, yes and this special set was ordered from Japan months ago. Mario was unimpressed with the Japanese directions, but got it figured out and Ollie was so excited, so it was worth every penny and moment of frustration.

Abby got her coveted Oodie and has basically been wearing it constantly since. Might have to pry it off of her back to wash it soon...

Funny friends got us this hilarious ornament to commemorate an unbelievable year (in case we ever forget it 😂).

The last days have been spent doing what we always look forward to...simply playing with new toys at home! 

From mini pinball to mini hockey...

Decorating cookies...

And a lot of eating!

Speaking of eating...We got this unexpected and so appreciated delivery of meat from a kind stranger that we met online while supporting another special kid that I'd like to ask you to pray for.

A friend (Hillary McKibbin's mom, Kelly) referred us to Maverick's Army  telling us how unbelievable his stem cell journey to treat his Aplastic Anemia has been (as an aside, happy to tell you that Hillary is doing really well, too and her Aplastic Anemia has responded to the 18 months of drug therapies they've treated her with). I began reading about Maverick's story a few weeks ago. He's in Montana and his family lives a long way away from the hospital he's being treated in. He's the same age as Ollie and so very like him in so many ways. His whole journey has been about stem cell transplant and he's on number 2 now with many complications. Ollie had all of his complications during cancer itself, but the parallels are uncanny and I find myself repeatedly reliving it all. Why would I want to do this? Because you all did it for us and his family needs that, too. Because I promised God if He saved my son I'd spend the rest of my life spreading His Word and part of that is to give people hope and remind them that He makes all things possible. 

So we shared our story of hope with them. And as always, people (including his brave mama) responded with love and support. One woman named Doni from Billings, Montana even sent me a private message saying she's praying for us and wanted to send us something with the help of her nephew who happens to live here! So they brought us meat!!! Needless to say my carnivorous bunch here were thrilled. LOL  With many thanks to generous Doni and her nephew Jason at Farm to Fork, steak is on the menu for dinner tonight!

But getting back to the point of this, please add dear little Maverick to your daily prayers. His family is suffering right now and we feel this acutely. Maverick loves Captain America, so we put Ollie's Captain America shield in our tree with a special Christmas wish that he will get through all of this and be healed. We sat down to dinner last night and Mario asked us to pray for Maverick together (note that pre-cancer we almost never prayed together as a family). Ollie said the most beautiful prayer and included so many people on the oncology/hematology and stem cell journey that we are praying for: Maverick, David, Chloe, little Ollie, Lukas, Brian, Connor-William, Leslie, Annika, Lila and for dear little baby angels Malcolm and Tessa. Heartbreaking that he should know so much about suffering at his age, but so very proud of his beautiful and giving heart. 

We so hope you've had a beautiful if quieter than normal Christmas and are staying safe. We send our love and gratitude to each and every one of you for helping us through this year. I'll likely write some thoughts for New Year's, so until then, be well and count your many blessings despite everything.