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.

Final Test of the Success of the "Abby Treatment"

[Photo Description: Ollie lies in the CT scanner with his feet going in first and his arms above his head.]

Yesterday we finally got those elusive scans following an extra month of "scanxiety" after we had to delay first for a cold and then we got bumped last week because 4 CHEO MRI technicians were out sick last week with COVID-19. This made for a very tense month around our house as we waited for illness to pass and for scan day to finally come..

It didn't help that Ollie's cold was in his sinus and caused eye pain, eye goop (diagnosed as viral conjunctivitis) and headaches, when in the past symptoms of his relapses were eye pain and headaches. 

[Photo Description: Ollie readies to have an IV inserted in his arm]

As always Ollie was amazing at getting through his scans day. Handling the IV insertion like a total pro, drinking the yucky contrast for 3 hours and waiting patiently for his turn.

While waiting and drinking he had a great session with his original child psychologist who is back from mat leave and couldn't believe how well-adjusted and amazing he's doing after everything he's been through. "The rumours really are true, Ollie. You're amazing!", she teased him.

[Photo Description: Dawn wears a mask and bears her arm to show a bandaid after getting her flu shot at CHEO]

I snuck off during his session for a short while to get a flu shot while there because I am a CHEO volunteer for the Oncology Patient and Family Advisory Council (PFAC) and the Research Institute. I had tried to encourage Ollie to be with me later as I took my turn being poked for once, but he had little interest. 

[Photo Description: Ollie is dressed in a hospital gown and pants and wearing a mask with a masked Dawn seated beside him defile waiting for his MRI at CHEO.]

We had to wait a bit for the MRI, so he was getting tired by the time they took us and had to lie still for 1.5 hours while they did full head and body scans. By the end he was getting wiggly and uncomfortable, but he hung in there. As usual I sat on the very hard plastic chair and prayed a lot. Naturally for my Ollie' s wellness, but also for other CHEO warriors like Griffin who was starting his chemo for his stem cell transplant at Sick Kids Hospital yesterday, too. 

[Photo Description: Dawn poses for a selfie wearing her mask and standing in front of a creepy clown painting in CHEO's MRI waiting area. Clearly Dawn is not generally a fan of clowns, with CHEO's now retired therapeutic clown Molly Penny being the exception.]

Totally worth the discomfort and seemingly never-ending wait as we got great news today - CLEAR SCANS!!! No evidence of disease after stopping the miracle drug Lorlatinib 93 days ago that has been our insurance policy against relapse for two years. So now we know definitively that the transplant with Abby's amazing overachieving half match stem cells was a real success! I've pretty much been in tears all night once again over the gift she's given him, and the gifts that God has given us.

This was a huge milestone to pass! There were minor things seen in the scans, like evidence of the sinusitis that he's had for the past month and inflammation still in his left eye that he had surgery on 4 months ago, but all exactly what we would expect to see and they said it was otherwise unremarkable. Unremarkable is amazing news in the cancer world! 😆

Monday we're back at CHEO for bloodwork and checkup, plus his final 3 doses of his childhood re-vaccinations after transplant. We're also sending his blood to Germany again to participate in an Anaplastic Large Cell Lymphoma (ALCL) study and to do the Minimal Residual Disease (MRD) test that can detect if there is any evidence of cancer cells left in his body. If this test is negative like last time, we rejoice. If positive we have decided with his medical team to put him back on the Lorlatinib as we won't take the chance of relapse again. Wish us luck, but honestly we're feeling pretty positive and hopeful right now.

So thank you all for your positivity and prayers. God and science are so unbelievably great and we are divinely blessed. If you could, please send some prayers for Griffin and his mama Tamy for a successful transplant. He's been battling off and on the past 4 years of his almost 6 years of life and deserves to get to true wellness, too. 

"Hyper"-charged Back to School and Childhood Cancer Awareness Month

[Photo Description: Ollie lies on a hospital gurney hugging CNIB Buddy Dog Hope in CHEO's Medical Day Unit (MDU) during his August bloodwork and checkup.]

It has been a busy 2 months since I last updated the blog in mid-August! I figured I'd better write an update as I am starting to get private messages from followers wondering if we're okay.

I expected to update before now, but a few minor developments (I'll elaborate later in this post) have kept me busier than expected and we had hoped to have had scans by now and be able to confirm if he was still in remission. Unfortunately we all got colds the past couple of weeks (many many COVID tests taken to be certain that is all it was for each of us in our turn) and had to postpone Ollie's original scan date last week until October 19th, so we don't have any news on that front yet and while we are at it will ask you to include Ollie in your prayers for the next week for clear scans again.

[Photo Description: Ollie proudly wears his white Kids Kicking Cancer Canada gi and new yellow orange belt in the living room while standing on an exercise mat with Hope at his feet after his virtual belt grading.]

Backtracking a bit, the end of August was busy with getting ready for back to school. Ollie was proud to get his yellow orange belt through Kids Kicking Cancer Canada! 

[Photo Description: Ollie, students and Senseis do pushups while wearing their gis and masks at an in-person class of Kids Kicking Cancer Canada - Ottawa Chapter, while CNIB Buddy Dog Hope lies beside Ollie's mat wedding her yellow CNIB vest.]

All summer Ollie has been attending Kids Kicking Cancer Canada in person at the Maplesoft Jones Centre/Ottawa Regional Cancer Foundation's facility. CNIB Buddy Dog Hope has gone with him and even helped to calm others in the class, so she's invited to all classes that Ollie wants to bring her to now! 

[Photo Description: Ollie sits beside Hope and Child Life Specialist Manon on a gurney in CHEO's Medical Day Unit (MDU) with one arm around Hope, while nurse Kerri gives Ollie the first dose of his last four live childhood re-vaccinations.]

Ollie also got his first dose of the re-vaccinations for the live vaccines (Measles, Mumps, Rubella and Varicella) at the end of August. Only one more set of these on October 31st and he will be fully re-vaccinated! That's 30 doses of childhood vaccines plus 3 COVID vaccines in the past 18 months! He was also told by his team that he could bring his Hope with him for this and any appointment at CHEO where she could be a support to him. As usual Hope was amazingly well-behaved and calmed Ollie like few others can. 

[Photo Description: Abby wears her backpack and stands on the front porch with feet apart and arms crossed on her high school orientation day. The sharing of this photo was authorised by Abby.]

September has been consumed by back to school and starting all of the lessons and activities again! Abby started high school at her special arts school and is settling in nicely. She is becoming more independent and responsible and has an active teenage social life these days, too. We're trying to give her as normal a first high school year as possible given how abnormal the last three years have been for her and all that she's sacrificed to keep her brother well.

[Photo Description: Ollie stands on the front porch smiling and giving two thumbs up, holding his mobility cane with his backpack at his feet on his fussy day of grade 5!]

Ollie started back to school in grade 5! He now wears a size 10.5 men's shoe already and is among the tallest in his grade 5/6 class already. This is evidence that his thyroid growth hormone has been working well (until recently, but we'll get to that a bit later). Kids who have had cancer often either have early onset puberty or do not enter it at all without the help of hormone therapy. His endocrinology team has said that as he's starting to move into puberty, they do not intend to slow it down since the growth is where they want him to be, even if a bit faster than he otherwise would experience it.

[Photo Description: Ollie sits at the dining room table reading his French homework in Braille.]

He's back with his amazing Vision Itinerant teacher Dawne and has a sweet new Educational Assistant (EA), as his awesome EA from last year did an accelerated pilot program this summer to become a teacher this fall. She will be missed, but we are grateful for all that she did for Ollie and know how lucky her new students are to have her. His English and French teachers this year are the incredible teachers that Abby had for grade 6 when Ollie was diagnosed. He also has a couple of subjects with the incredible and kind teachers who were his first visitors in hospital during round one of chemo. His gym teacher was Abby's, too, is his same as last year and was and is so committed to adapting sports for him. He came home telling me about capture the flag and how she had the kids on the other team all wear beeper boxes so that they couldn't sneak up on him and steal his flags because he can't see them. I remain so incredibly thankful for his entire educational support team and all that they do for our boy.

[Photo Description: Ollie stands in the schoolyard  on the first day of grade 5, holding his mobility cane and giving a thumbs up with his vision itinerant teacher, Dawne beside him. Photo shared with permission from Dawne.]

We'll focus a lot on the French Immersion side of the shop this year. Ollie remains behind in this subject area having missed two years of instruction thanks to his treatments and a lack of French instruction in his year in virtual school. Also, apparently blind and low vision kids typically don't do French Immersion (50% of the day in French) - they either do core French (1 period out of 4 in French per day) or are exempted from French altogether in their Independent Education Plan (IEP). 

[Photo Description: Ollie stands outside of the school on Terry Fox Run Day wearing his Fight Like A Kid sweatshirt with the Gold Childhood Cancer Awareness ribbon made by Littlepressco. He holds his mobility cane under his arm and a Terry Fox Run sticker in his hands that reads, "I'm not a quitter. I'm running for...Griffin, Lily and CHEO friends still fighting."]

Ollie was given the option to go down to core French, but was insistent he could do it, so I'm working with his amazing French, Resource and Vision Itinerant teachers to modify the curriculum to set him up for success until he is fully up to grade level in French. It is more challenging for a blind kid to learn French Braille, but he is determined and smart. Last year he fully caught up in two missed years in all other subjects as well as jumped 2 grade levels in Braille, too. All because we accommodated, supported and believed in him. So now we'll do the same in French. And he'll show everyone (as he always does) what resilience and perseverance can do. Ollie inspires me daily to do more than people expect I can.

[Photo Description: Ollie and Dawn pose in front of a Make-A-Wish Eastern Ontario banner at a recent Golf Tournament. Photo courtesy of Sharon Forbes, Make-A-Wish Eastern Ontario.]

That's part of why I do so much advocacy and fundraising for organizations that are important to us. To that end, September was Childhood Cancer Awareness Month, and a busy one it was! 

We started out filling in for another oncology family who was supposed to speak at a golf tournament being held for Make-A-Wish Eastern Ontario, but was admitted to hospital unexpectedly days before. Often cancer families are in this situation and we ourselves have experienced this in the past, too. Ollie and I drew the raffle tickets and spoke about Ollie's story and what his wish meant to him. Ollie caused a flurry of sales when he told the attendees that there were 200 tickets to be sold and they'd only bought half of that and another kid like him might not get their wish if they didn't buy more! 😆 He was honestly so charismatic and inspiring that the entire tournament was in love with him. 

[Photo Description:  A masked Ollie holds a CHEO Teddy Bear in the nursery in the CHEO Dream of a Lifetime Home for 2022 during the official media launch.]

The next week we got a last minute call from the CHEO Foundation asking if we'd fill in for the oncology family that was going to help launch the CHEO Dream of a Lifetime Home Lottery for them. Sadly this family had also been unexpectedly admitted to hospital with illness. Mario and Abby had school and work obligations, so Ollie and I represented. You can see the launch and our interview here. He was a bit tired and shy about the official launch part, but did amazing at the one on one interviews. You can read another account of the launch event with Ollie's interview here. Finally, I did an interview with Sam Laprade on her CFRA An Hour to Give session on the CHEO Dream Home. You can listen to my interview starting at the 33:58 mark.

[Photo Description: Ollie sits in the driver's seat of a golf cart decorated with gold balloons with Sensei Lyne sitting beside him and Dawn standing beside her at the 2nd Annual Kids Kicking Cancer Canada Ottawa Golf Tournament. Photo courtesy of Sensei Reesa.]

Finally, we were glad to be asked to be Ambassadors for the 2nd Annual Kids Kicking Cancer Canada's Ottawa Golf Tournament (no filling in for others this time). This time we got to spend the day in the beautiful fall weather, cruising around in a golf cart delivering food to volunteers, talking to golfers in the tournament and later delivered a testimonial as to the difference that the program has made in Ollie's life. 

[Photo Description: Dawn makes her eleventh blood donation wearing a mask at Canadian Blood Services in October 2022. Her milestone 10th was in July 2022.] 

In addition to all of this, I'm working  full-time, am on various committees and councils for pediatric cancer and blindness and continue to work on several cancer-related studies. It's a lot, but I feel so grateful to be well enough myself to do these things and to pay forward the incredible blessings that we've been given. As we move into the winter some of these commitments will be completed, lightening my load somewhat. 

[Photo Description: Ollie and Dawn are masked and sit on the sofa in the living room of the CHEO Dream of a Lifetime Lottery Home.]

One of my biggest mental loads still is, and likely always will be monitoring Ollie's health. To illustrate how important this remains, even though he is more than two years post transplant we had a little medical issue over the past 6 weeks, too. 

[Photo Description: Ollie has blood taken at CHEO for his thyroid tests in September 2022.]

In the first weeks back to school we started to see little changes in Ollie: 

- Being short-tempered; 

- Waking in the night each night (he hasn't done that regularly in about a year);

- Waking up at 5 am daily after waking in the night and not sleeping his usual 10 hours per night (getting about 7-8 hours per night maximum); 

- Falling asleep in French class in the afternoons and it being really hard to wake him;

- Sleeping 2-3 hours at midday on weekends (normally he insists on staying awake even when he's tired);

- Complete lack of appetite and is having to almost force food down his throat;

- He continued to lose significant weight (he'd lost 9 pounds in the month after stopping his miracle cancer inhibitor drug Lorlatinib, which was expected given other people had after stopping) rapidly;

- Unexplained constipation and diarrhea again when we'd finally gotten bowel movements settled over the past 6 months after 18 months of instability after transplant; 

- Nervousness and anxiety (he'd started getting stressed again about scratching, dropping or breaking things and ask us constantly if he had. He used to do this whenever he was really anxious, but we've worked on it with the child psychologist and in August and early September when he'd gone off of the Lorlatinib it had disappeared entirely, then suddenly came back 6 weeks later);

- Heat intolerance when he'd have his plantar warts lasered, even though he'd done the treatments for a year and never complained that it ever hurt; and

- Night sweats.

[Photo Description: A masked Ollie checks his Braille on the Perkins Brailler in the Braille Room at school. A small black lab stuffie wearing a CNIB vest sits beside him on the table. Photo courtesy of Dawne Smith-Appell] 

It was the meltdowns and falling asleep during the day that made little bells go off on my head in the third week of September. This was just after his school team started wondering if he really was unhappy in French Immersion and suggested we might need to take him out. I started thinking about when we'd seen these symptoms before. At first it was scary because many of them are also symptoms of cancer. But I breathed deep and thought harder and remembered that after transplant when we'd gotten home and started seeing outbursts, fatigue and many of the same symptoms, it was his thyroid causing issues. Then I started thinking about what could make his thyroid meds stop working properly and I remembered that when he'd gained a lot of weight on Lorlatinib after transplant, they'd needed to bump his synthetic thyroid hormone med up because they told me it had to be calibrated to his weight. He'd lost 18 pounds in 2 months, so I realized he was likely experiencing hyperthyroidism instead of the hypothyroidism that he started taking the med for. Essentially I was certain he was taking too much thyroid medication because of his weight loss and this hadn't been flagged as a concern by his team at our last checkup at CHEO in August, even though they'd commented on the rapid weight loss. 

I verified in his MyChart online that they hadn't measured his thyroid levels by checking his TSH and T4 levels in his bloodwork since April. So I sent messages to the endocrinology team and his oncology team to explain and request a blood test. When the nurse practitioner in endocrinology called me back, she confirmed that it sounded like his thyroid was now overactive and ordered the blood test. She also said we would check his cortisol levels at the same time to be sure they were okay. Our team in CHEO's Medical Day Unit was kind enough to squeeze us in on the Friday morning for the test to keep things easier for Ollie to have it in an environment he knew well versus going to the lab directly. Monday I got the results in MyChart before I got a call from the Endocrinologist. Cortisol levels were fine.  But he did have high T4, low TSH. Hyperthyroidism. The Endocrinologist called about an hour later to confirm it, to commend me for seeing it and asking for the blood test, and to tell me she'd send a new prescription to the pharmacy for us that he should start the next day. She said that it would take 4-6 weeks for things to level out on the new meds and if we were coming in for routine bloodwork at the end of October anyways, we'd also check his levels again to see if the levels were normal or we needed to adjust the dose again.

[Photo Description: Ollie wears a helmet and is being silly while riding his Berg peddle go kart at the Central Experimental Farm with both hands in the air.]

So I was able to go back to his team at school and confirm that it was his thyroid, not bad behaviour or boredom. And Ollie insisted he was going to continue in French Immersion even if we have to work harder this year to make up for the two missed years when he was sick. He says if he could catch up on everything else last year after two years away, he can catch up on French this year, even with thyroid issues. 

[Photo Description: Ollie and friends from his Beep Kickball with the Miracle League of Ottawa.The kids are outfield in the last game of the season that was kids against blindfolded parents. Of course the kids won!]

Despite these challenges this fall, my boy has also participated in the Terry Fox Run and made the Cross country running team. He didn't go to the meet, though, as it ended up being the same day as a special event day for the Blind Low Vision program and he attended that event instead, where I'm told he was a real leader and helped the little kids a lot! He's also finished his Beep Kickball season and returned to his skateboarding lessons at The Yard with instructor Jordan. He's even inspired another little friend with vision loss to start taking lessons just before him on Tuesdays with Jordan! 

[Photo Description: Ollie porches on the edge and gets ready to drop in on the bowl at skateboarding lessons at the The Yard. Instructor Jordan holds his hands for balance.]

Mario and I both continue to work from home, with him going into the office the odd weekend day to do server work for a few hours as needed. We are grateful for the flexibility that our employers allow us to work around Ollie's school drop off and pick up schedules, as well as his medical appointments. Having to figure out a one-to-one daycare situation for him as well this year would have been a huge challenge. There have already been a number of days where there has been a shortage of Educational Assistants at Ollie's school and two afternoons that I've had to keep him home for lack of support already. These are the same educational workers that the Ford government and the Education Minister Stephen Lecce are refusing to negotiate fairly with. The same ones that my son and special needs kids like him need to get an equitable education. 

So our work flexibility may be even more necessary in the weeks to come if the mediation fails and educational workers strike. We had so hoped that this year could be completely normal, but between educational worker issues, difficulty getting COVID vaccines that should have been available months ago and more COVID spread, and flu season happening earlier than normal, it looks like we're destined to have another year of disruptions. Still grateful to have these problems than those that we've been dealing with the past 3-years, but wouldn't it be nice not to have to keep adapting?!

[Photo Description: Mario describes a small pumpkin to Ollie and holds it so that Ollie can feel it at the pumpkin patch at Miller Farms.]

So as we cruise into this week, which marks our three year anniversary of landing at CHEO in pursuit of diagnosis, and our twice annual MRI and CT scans to see if he's still cancer free, we once again thank you for continuing to follow our little story. Shockingly we are nearing 400,000 views of this blog around the world in the almost 3 years I have been writing it! Once again, I humbly ask for your ongoing positivity and prayers for clear scans this week. We'll share a short blog post as soon as we have results.

In the meantime, be kind to each other and yourselves, and please don't take any of your blessings for granted. See below for Ollie's recent Thankful Friday inspiration in his class from the day they also did the Terry Fox Run at school. Let us all see the world as Ollie does despite all of the suffering he's endured in his young life.

[Photo Description: Ollie's brailled message for Thankful Friday contribution on Terry Fox Run Day. It reads, " I am grateful for life. I am grateful for friends. Everyday, I am grateful for those who survived." Photo courtesy of Leanne Endicott]

1000 Days

[Photo Description: Ollie wears a mask and walks with Hope while using his mobility cane in the boardwalk at CNIB Lake Joe.]

It's hard to believe that the summer is more than half over already! We've packed a lot of living in the past 6  weeks and over the next couple will turn our thoughts to getting ready for school. But for now, we continue to try to squeeze every ounce of joy and goodness out that we can as we understand so well how everything can change in a moment and sadly we have several little friends in relapse or preparing for transplant this summer. 

We kicked off our summer with a CNIB Lake Joe Holiday Week with the whole family. We had such a blast last summer that we all wanted to go again this summer (even the reluctant teen went along with the plan and had a great time). It also gave us the opportunity to re-orient Ollie with the camp and let him practice doing things for himself with our guidance to prepare him for the second week there when he stayed alone for the youth camp. We're grateful for the continuing requirement to be vaccinated for COVID and that everyone coming to CNIB must be tested for COVID to ensure no one is unknowingly bringing it to the kids. The nurses on-site are also there to monitor and assist if needed during the week. We also continue to mask indoors and minimize our potential exposure anywhere we go in public, although as a general rule we don't wear outside anymore unless we are in prolonged close proximity with others.

[Photo Description:  Cathy, Dawn, Ollie, Abby and Mario sit on a bench under a tree at CNIB Lake Joe while Hope sits at Cathy and Dawn's feet. All are wearing masks.]

On the first day we were there we were allowed to have a very special visitor. It turned out that Hope's CNIB volunteer puppy raiser was staying nearby in Muskoka with family and when I invited her to meet, she didn't hesitate to come! For 15 months we'd built a friendship online, but never met as she lives in Halifax! She was as lively and sweet in person as by phone and messages and while she was uncertain if Hope would remember her, it was clear as Hope gleefully licked her face and pranced around her that she did. I was struck again by the incredible generosity and selflessness of people like her who voluntarily raise and love a pup that they know they'll have to give up after a year to help someone with sight loss. We had a short, but lovely visit with Cathy and her brother in law who had kindly driven her to the camp and it cemented our ongoing love for her and the incredible gift that she has given Ollie.

[Photo Description: Ollie and Hope on the stand up paddle board on Lake Joseph while Mario walks beside them for support.]

The rest of the week didn't disappoint, either. Ollie did all of the usuals - kayaking, stand up paddle boarding, swimming, tubing, water sliding, archery, and even mini golf this year on their new course! 

[Photo Description: Ollie, Dawn and Hope on the boardwalk in front of the lake at CNIB Lake Joe.]

Ollie was particularly thrilled when he was able to entice Hope onto the paddle board with a treat and she settled right down and rode around with him! 

[Photo Description: Mario stands behind Ollie and helps him to aim and position his bow and arrow towards the target at CNIB Lake Joe.]

The week was of course more populated than last year, but still not that big and all participants had to be vaccinated and have negative COVID tests to attend. 

[Photo Description: Julia and Guide Dog Abby, Mario, Hope and Ollie,  Nurse Sue, Aman and Guide Dog Robin pose near the waterfront at CNIB Lake Joe.]

As usual we met some amazing new people and reconnected with friends made last year who were there this year, too! It helped enormously to know that Nurse Sue, RN and two student nurses from University of Toronto were on site if needed and really allowed us to be comfortable with Ollie staying for the second week on his own.

[Photo Description: Liam and Ollie pale in a double kayak at Lake Joe while a lifeguard and Mario walk in the water nearby.]

We met a lovely family from St. Thomas (very close to Chatham-Kent where I am from originally) and ate our meals with them. The matriarch, Susan had begun to lose her sight 5 years ago and her family are incredibly supportive including her husband and daughter. Her grandson who was close in age to Ollie, comes each year with them and is very comfortable around blind and low vision people. He and Ollie were fast friends and did everything together that week. Susan was so patient and shared with Ollie quite a few tips about accessibility features on the iPhone.

[Photo Description: Ollie and Abby making sand castles on the beach at Lake Joe. Ollie is wearing his new full f face mask and snorkel combo.]

Abby also met a girl her age with sight loss from New Brunswick. It was a good opportunity for her to be reminded that sight loss can happen to anyone, doesn't change that people are people, and for her to be able to relate to it better. I think it's sometimes hard for her to separate Ollie's day-to-day blindness from the cancer as it's a constant reminder of the trauma for her. Spending time with Hailey made her mindful of all of the daily challenges that her brother still has to overcome to live normally.

The camp ended on Saturday morning and we drove the 15 minutes to our rented cottage. Ollie spent two days with us there before we dropped him off at camp again on the Monday and the rest of us stayed at the cottage until picking him up the following Saturday. I can't post too many photos as the teen won't allow it, but we had an amazing week at Healey Lake Lodge & Market.

[Photo Description: Mario, Ollie, Abby and Dawn eat lunch on the deck at Healey Lake Lodge and Market.]

Staying nearby saved us the 5 hour drive there and back again or putting him on a shuttle bus without us. Honestly as stable as he is, we were not ready to leave him so far away without us, as the omni-present fear remains after almost losing him several times during treatment. So being 15 minutes away gave us comfort that we could be there in moments if needed and allowed us to have some dedicated time relaxing with Abby.

[Photo Description: Mario and Ollie in the water near the floating swim mat at Healey Lake Lodge. Both are wearing lifejackets and Ollie is wearing his new mask and snorkel combo.]

Ollie spent most of his time at the cottage in the water. With a sandy beach, shallow water and an exciting new mask/snorkels combo he was thrilled. 

[Photo Description: Ollie and Mario ride the golf cart near the docks at Healey Lake Lodge.] 

He also got to drive the golf cart as the the kind owners knew he was blind, but wanted him to have fun with daddy's help. The video I took of it features Ollie laughing hysterically and yelling "Woohoo!" as he drove down the lane.

[Photo Description: Mario and Ollie under a tent at dusk at the ice hockey table.]

He also spent a lot of time playing table ice hockey (he now wants one for his clubhouse!). Like air hockey, but the table actually has an ice surface, score board, etc. 

The owners Nadia and Fred were incredibly personable and kind and asked me how Ollie went blind. Poor Fred looked like I punched him in the gut when I told them that Ollie had cancer and the lymphoma damaged his optic nerves and took his sight. I reassured them that he was doing great today thanks to a stem cell transplant with Abby's cells and they both marveled at how happy and positive both of them appeared after everything they'd been through. Mario and Abby hate to talk to people about this stuff because they always feel like they have to comfort others after their reactions. I am totally honest and agree with people that yes, it was the hardest thing we've ever done, but also rejoice in telling them how great he and all of us are today. I don't want to make anyone feel bad with our story, but I've also learned the importance of people learning how to look those who have been through trauma in the eyes and acknowledge their pain. I do it for others who have had tragedy in their lives and particularly now that we've been through so much I understand how critical it is to let people feel empathy. It's what our world needs more of right now and it often seems that many are incapable of it in this ongoing pandemic. 

[Photo Description: Dawn takes a selfie during a campfire with Abby and Mario, while Abby eats a s'more.]

Abby enjoyed being an only child for a week! 😜 She laughs and dances more in the last few months than we've seen in 3 years and this was even more obvious at the cottage where she was carefree and happy. I'd worried that she'd be bored to tears with just us, but she spent some time online with friends and quite a bit of time in and on the water with us during the week.

[Photo description: Mario fishes off of the dock on Healey Lake.]

Mario had his favourite kind of vacation where nothing was scheduled and everything was spontaneous. He fished a lot.

[Photo Description: Dawn takes a selfie of her and Mario in kayaks on Healey Lake.]

Because Abby is a teen now and still wanted a bit of her own space we were able to get out on the water without her quite a bit to kayak and canoe. It was really the first time we've spent out alone since Ollie got sick. Literally the last time we really had time away from them was the weekend before Ollie was diagnosed in November 2019 when we went to a concert for Mario's birthday. 

[Photo Description: Abby, Hope and Mario have their backs to the camera as they walk into the Rosseau Market.]

We also poked around the local towns and attractions a few of the days we were at the cottage. 

[Photo Description: Ollie wears sunglasses and holds his mobility cane while leaning down and giving two thumbs up. Mason sits in the boardwalk and hugs Hope to him between them.]

Ollie had a good week at camp without us, although he did call us almost every day with the help of others with cell phones. It made me laugh when one day he called to ask me to text his friend the links to his book and his pizza so that he could prove to everyone how famous he was! 😜

[Photo Description: Ezra, Ollie, Mason and Hope pose in the dining hall at CNIB Lake Joe. Mason hugs Hope. All are part of the CNIB Buddy Dog Program and were at camp the same week together for Youth Week.]

I went early on the last day so that he could introduce his new friends to his Hope. As usual she enchanted everyone and all of the kids were excited to meet her.

[Photo Description: Mario, Dawn, Ollie and Abby crouch close together while Ollie gets ready to bow out the two candles on his cake to celebrate the second anniversary of his stem cell transplant/Abby's Hero Day. Ollie is sticking his tongue out while everyone else beans with happiness.]

When we got home from our first two weeks from CNIB Lake Joe, it was time to celebrate Ollie's second re-birthday/Abby's Hero Day! We were grateful to share it with our good friends the Navas who had invited us to a celebration with them. It still shocks me that it's already been two years and he's so well.

[Photo Description: Dawn poses in front of a Canadian Blood Services banner while holding a sign that notes that this is her tenth donation for those like Ollie.]

I also marked the anniversary that week with my tenth blood donation through Canadian Blood Services with my trusty blood buddy M-F donating with me again! 

[Photo Description: Dawn takes a selfie after getting her fourth COVID  vaccine at the #Jabapalooza vaccine clinic held in the street in the Glebe neighborhood in Ottawa.]

I was grateful that the province finally opened up boosters for adults as it had been more than 7 months since my last. I went as soon as I could to get my fourth. This protects me and everyone around me from serious illness. Now hoping they open them up for kids before the next inevitable wave this fall when they're all back in school. 

[Photo Description: Ollie sits on a gurney at CHEO in the Medical Day Unit while getting bloodwork done for his 3 month checkup.]

Ollie had his three month checkup last month. His bloodwork was stable as usual except that a few of his liver levels have been a bit higher the last couple of times. So with this in mind and given the plan was always to take Ollie off of his miracle cancer inhibitor drug, Lorlatinib after two years post transplant, his oncology team felt we were ready to do so. This will finally tell us whether the transplant and extra insurance of this drug have truly been enough to keep his cancer away. Plus it allows us to give him the final four live vaccines (measles, mumps, rubella and varicella) that he couldn't get while still on the drug. He'll go for his first dose of these at the end of August. 

We're watching carefully for any signs of relapse and I'm breathing deep and praying often that he doesn't, but the dread is always there and history has shown us that he typically relapses in his central nervous system after 3 weeks off treatment. It's three weeks off of the drug today. We will scan in early October and re-do his Minimal Residual Disease (MRD) test to see if his MRD is still negative. We've agreed that if it is positive we'll not take any chances and immediately put Ollie back on the Lorlatinib.

Ironically it's also 1000 days since his diagnosis today. Now 1000 days is not a recognized milestone in treatment, but it strikes me that 1000 days ago when our lives completely changed, I was uncertain we'd make it to a hundred nevermind a thousand! It's unbelievable how fast time has gone since transplant.

[Photo Description: Ollie in the dugout with Hope before his weekly Beep Kickball game through the Miracle League of Ottawa.]

Ollie is playing Beep Kickball on Mondays this summer with the Miracle League of Ottawa at their amazing adapted sports and playground facility in Navan for special needs kids. I was going to write a separate blog post about this one, but I think CBC Radio with the help of Ollie and other kids he plays with covered it best here.

[Photo Description: A poster promoting the book signing for Ollie's Telescope last weekend. Ollie is shown smiling while signing a book in front of a backdrop of the cover of the book. Photos of the author and illustrator are also featured.]

Meeting Sam who wrote "Ollie's Telescope" and connecting with her and Kaitlyn, the illustrator has been such a blessing. Last weekend we had the opportunity to participate in a book signing at Chapter's in Kanata to help raise more money for oncology families like ours through the CHEO Foundation.  

Gamma and Bumpa came for the weekend for the book signing. We were also thrilled to see many old friends, several of Ollie's teachers (including his Vision Itinerant teacher, his first orientation and mobility consultant and his karate senseis), awesome people I volunteer with at the school board to advocate for special needs kids and even people I've met on social media who have followed Ollie's journey from the beginning and been so supportive of our family. It was a beautiful afternoon and my heart was so full with how much we continue to be supported by our community.

[Photo Description: Ollie sits holding a book at a table promoting the CHEO Foundation and the book "Ollie's Telescope" while author Samantha Smadella and Illustrator Kaitlyn Blanchard stand behind the table beside him.]

I also got the opportunity to be interviewed by the lovely and kind Patricia Boal at CTV News/CFRA News radio about the book during her "Ottawa At Work" show after the book signing. Ollie opted out for once to spend more time with Gamma and Bumps while they were here. 

In between weeks of CNIB Lake Joe camp, Ollie also attended a couple of local outdoor day camps that have a  inclusion program where special needs kids get a one on one counselor. For Lego camp he had both a CHEO oncology friend and a vision itinerant program friend in the camp with him, too!

[Photo Description: CNIB Buddy Dogs Hope and Ray, who are wearing their vests and haltys and are actually siblings, rest under the dining table during a meal during Buddy Dog Camp.]

This past week Ollie, Hope and I were back at CNIB Lake Joe for the Buddy Dog Camp. It was inspired by Ollie, Hope and their friend Mason who were all part of the Buddy Dog Program and met each other and the Executive Director of CNIB Lake Joe Monique Pilkington at a holiday week at camp last year. All Ontario Buddy Dog duos and a parent for each were invited, as were those from Ontario on the waiting list for a Buddy Dog. One of Ollie's friends from his Vision Itinerant program also just got a Buddy Dog recently and was there, too so it was an especially fun week for Ollie!

Ollie was particularly psyched to meet Hope's brother Ray who was almost placed with us originally before it was decided that Hope was made for him. Ray's kid is Phoebe who is super sweet and her mom Aubray is awesome, too. She jokingly called the kids "Uncle Ollie" and "Aunt Phoebe" all week and we decided we are family thanks to Ray and Hope. 

[Photo description: Ollie walks Guide Dog in Training Riley with the harness and no cane for the first time with the help of CNIB Guide Dogs Trainer Shawna. The kids all got the chance to try it and all were then super psyched about one day getting their own official Guide Dogs.]

The camp was packed with the usual camp activities and Buddy Dog training sessions so was a very busy 4 days. It was great to meet so many people in person with whom I have interacted online in our Buddy Dog and CNIB parent groups.  

[Photo description: Ollie and Dawn talk to Anykah and her mom about Ollie's medical complexities and how he came to get Hope. Anykah is on the waitlist for her own Buddy Dog and Hope was so incredibly gentle with her. Photo courtesy of Miriam Mas.]

I think my favourite moments at camp weren't even about Ollie as we've had so many incredible moments at Lake Joe already this summer and so many memorable times with Hope in the past 17 months. My favourites were watching the kids on the waitlist (none of whom had ever been to CNIB Lake Joe before this either) interact with the dogs and the other kids. It's like that Robin Williams movie, "Awakenings" in some respects. Like all of a sudden these people who seemed lost are awakened to the incredible little blessings that we often take for granted every day. That they finally seem to belong because they are awakened together. Talking to the parents of these kids reaffirmed that it really was the first time they'd ever seen their kids seem completely at ease with other children and be confident in their abilities as opposed to hesitant to show their disabilities. It's exactly how I felt last year watching Ollie there for the first time...that he was finally with people who completely got him and what he lives with daily. 

[Photo description: Ollie feels Carla, the CNIB Guide Dog of CNIB Guide Dogs Executive Director Diane Bergeron, as CNIB Guide Dog Trainer Shawna looks on. Photo courtesy of Miriam Mas.]

We are very lucky that our community has embraced Ollie and included him since he went blind as we've heard so many heartbreaking stories of kids that are ostracized. I want Ollie and all blind and low vision kids to grow up feeling empowered, included and accepted. 

This is why I continue to do the advocacy for blind and low vision kids, recently joining the Board for Ontario Parents of Visually Impaired Children (OPVIC), whom I also represent on the Ottawa Catholic School Board's Special Education Advisory Committee (SEAC). We also do everything we can to support the work of the CNIB. 

[Photo description: Celebrity and CNIB Ambassador Joan Kelley Walker bends down to meet Hope as Dawn and Ollie look on. Dawn and Ollie are wearing yellow CNIB Lake Joe shirts and Hope is wearing her CNIB Buddy Dog vest.

Photo courtesy of CNIB staff.]

So Ollie, Hope and I were thrilled to be asked to stay an extra day to be CNIB Ambassadors for the CNIB Lake Joe Dock to Dock fundraiser this year. Our role was easy and fun - we just got to talk to celebrities and donors about how awesome the camp and Buddy Dog programs are. Ollie did a terrific job and Hope was fantastic, too. 

[Photo description: A screen capture of a tweet sent by Sportscaster Rod Black after meeting Ollie, Hope and I before the CNIB Lake Joe Dock to Dock Fundraiser.]

Meeting Rod Black was fun and he was excited to hear about Ollie trying various sports since losing his vision, but really impressed by his skateboarding. We were with Rod and Monique, so Ollie  used his influence wisely and planted seeds that CNIB Lake Joe needs a skate park next! 😜 Not so farfetched as they are raising money for a capital campaign to build a gym there and it could easily be a portable build where they put them out when they need them and store them when they don't like they do here in Ottawa at Landsdowne Park. We'll keep you posted! 😜

[Photo description: Ollie clowns around the morning of the event while holding a giant blank CNIB Lake Joe cheque as Hope sits at his feet.]

They're fundraising at Dock to Dock to support a national Buddy Dog Camp next year to bring in kids from all over the country and for a new boat for water skiing, tubing, etc. as the old one has been broken this year. They're just a bit over $5,000 short of their goal, so if you're able, please consider making a donation here.

It was a great day and we were proud to play a small part in it and to be able to give back in this small way.

The next couple of weeks we have a few more day camps (Scootering and Road Hockey) and then we'll be readying for another year of school! 

On this one thousandth day after diagnosis we remain so grateful to all of the people and organizations that have gotten us this far. We are blessed beyond measure and will keep doing everything we can to pay it forward for the next thousand days! Please send prayers that Ollie remains in remission without his miracle drug and that his wellness continues.