[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.]
[Photo Description: Ollie and Hope on the stand up paddle board on Lake Joseph while Mario walks beside them for support.]
[Photo Description: Ollie, Dawn and Hope on the boardwalk in front of the lake at CNIB Lake Joe.]
[Photo Description: Mario stands behind Ollie and helps him to aim and position his bow and arrow towards the target at CNIB Lake Joe.]
[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.]
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.]
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.]
[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.]
Mario had his favourite kind of vacation where nothing was scheduled and everything was spontaneous. He fished a lot.
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.
We also poked around the local towns and attractions a few of the days we were at the cottage.
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! 😜
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.
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.
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!
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.
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.
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.
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!
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.
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.
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.
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 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.
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! 😜
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.
