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.

Scan and Biopsy Results

[Photo description: Ollie found the free popsicle stash in CHEO's Medical Day Unit (MDU) oncology clinic while waiting between scans and cheekily kept asking if his tongue was blue!]

It was a really long 3 weeks waiting for biopsy results, but in our usual way we found that keeping busy and letting go while letting God worry about it all is best. Thankfully we had plenty of distractions to keep us busy.

[Photo Description: Four of the senior grade classes and some of their parents attend the first in-person school mass at St. George's Parish since the pandemic began in March 2020.]

We've all prayed an awful lot the past few weeks and have heard from so many of you saying that you were praying with and for us, too. It means the world to us to have our incredible army still here sending us light and faith. As it happens we also recently had our first opportunity to actually set foot in our parish for the first time since Abby's confirmation in February 2020. 

Just after Easter and the week after his biopsy, we got a message at home saying that Ollie's was one of four classes attending mass in person and parents of those classes were welcome to come or watch online with the rest of the school. Given Ollie's osteoporosis in his back and hip makes it too hard for him to walk all the way (it's 1.4 km each way from the school and back), his Vision Itinerant teacher had me drive him and met us there. Most students were still masked, all teachers were still masked and Ollie never takes his off, so we felt relatively comfortable doing this. 

[Photo Description: Ollie is in the grey jacket in front of his Vision Itinerant teacher and sitting with his classmates and dear friends during his school's mass.] 

It was both a joy and pretty emotional for me to be back given the last time he had just relapsed in his brain and our journey stretched further ahead of us than behind us like now. Ollie was very reverent and asked to stay and pray a bit extra at the end. I knew he was praying that he was still well and for so many of our CHEO friends who are still fighting. When I drove him back to school he seemed upset and upon further discussion I learned that he'd felt left out that he couldn't yet get communion like his friends. He did his Reconciliation recently, but we're still prepping for First Communion and hope to schedule it before the end of the school year. Yet another reminder of how much he's missed these past 2.5 years, but we're almost caught up!

[Photo Description: Ollie has a blast using Nurse Julie's scanner during his routine CHEO oncology appointment for bloodwork and check up. Julie is incredible with the kids and was wearing a Batman shirt with cape. She laughingly said it was great to work in a place where any day is dress up day!]

We had his routine visit with CHEO Oncology the following Monday. Bloodwork looked good other than slightly higher levels for his liver function (not super concerning and likely attributable to a change in the disagree of his Lorlatinib to 75 mg a few weeks before) and Dr. Abbott looked at the remaining bumps and the stitches from his biopsy and commented that she could see why I had been concerned and felt it was good that we biopsied. She said she would push for results sooner than the 2-3 weeks dermatology had quoted, but knew that all departments across hospital were short-staffed due to COVID.

[Photo Description: Dawn holds up her favourite snacks after donating blood at Canadian Blood Services recently.]

Later that week I went with my "blood buddy" Marie-France to make my 9th blood donation at Canadian Blood Services. It is our ritual now that every 84 days we give blood in Ollie's honour to pay it forward to other families trying to survive what we have. Each and every time I feel grateful to every single selfless person who gave to save my child and know that mine is saving someone's child, too. In just a few weeks I'll pass two milestones...my tenth donation and two solid years of donating every time I have been able (my hemoglobin was too low one time, but otherwise I have given every 84 days). I started when we were waiting for Ollie to get back into remission and I knew that the pandemic was causing dangerously low levels of donations. They told me before his transplant that they couldn't guarantee that there would be blood available if he needed it and I told them just to hook me up and give all of mine to him. I knew they wouldn't do that for real, so I decided to start getting it into the blood bank myself and to try to get more people to help me. 

[Photo Description: A screen capture of Dawn's GiveBlood App showing that so far 16 donations have been made by members of the "Donate for Ollie & Abby" team.]

Given so many people in this province have been sick with COVID in recent months and not donating, there is once again a 25% shortage in the reserve of blood. If you are able or have never tried it but are willing, I encourage you to donate. It's so easy, takes less than an hour and honestly there are so many like Ollie whose lives depend on it being there when they need it. You can even join our team, "Donate for Ollie and Abby" through the "Partners" section of the Give Blood app or when you are online scheduling your donation. 

[Photo description: Ollie washes the van using a power sprayer.]

Ollie enjoyed the recent super warm weather by helping mama wash the van at a DIY car wash. He'd never done it sighted before he went blind and was so excited to hold the pressure washer and feel its power. The entire time he yelled, "Woohoo!" and laughed his head off. Worst actual wash van ever had, but best time doing it!

[Photo Description: Ollie sits on the deck at a table playing Tech Deck finger skateboarding.]

He's also gotten out more with the nice weather, but we are always careful to diligently use sunscreen, have him wear a hat and sit in the shade whenever possible as having had chemo, radiation and a transplant he is more susceptible to getting skin cancer and sadly he also has a Vedic pre-disposition to it as it runs in my family, too. In fact recently I had a sun spot removed by a GP Specialist in Dermatology just in case. After all of this you are so much more aware of every little unusual mark on your body and want to be diligent to get it checked early. 

[Photo Description: Abby's birthday donuts from Suzy Q's that read Happy Birthday.]

Abby's 14th birthday happened recently. Now that she is older they don't really do "parties", but simply hang out, marking the day with simple-gifts and lots of candy it seems. She was happy with that, so while I mourn the loss of her last real years of kid parties, she had a lovely day and was satisfied. 

[Photo description: Abby and Dawn having pedicures at a local spa for Mother's Day/Abby's birthday.]

Abby's birthday fell on Mother's Day this year as it often does, so she and I went for mother daughter pedicures to mark the social day for both of us.

[Photo Description: At CHEO on scans day Ollie holds a cup of orange flavored contrast with a straw in it as he sticks out his tongue making a grossed out face.]

Ollie's scans went well, but it was a long day at CHEO from 9 am arrival to begin driving the contrast and appointments all day until 5 pm. Fighting cancer even when in remission is definitely way harder than any job I've ever done. 

[Photo Description: Ollie spouses his eyes and braces for the buses to remove the first stitches from his shoulder where the biopsies were.]

The hardest part of the day for him ended up being the removal of his biopsy stitches. I had asked at the last minute if someone in the Medical Day Unit (MDU oncology clinic) could possible remove them as they were really bugging him and we didn't have an appointment to see dermatology to remove them until the following week which would be four weeks with them in and they should have been removed after two. Apparently they are using non-dissolving stitches due to supply issues, so one more side effect of COVID and further strain on our hardworking nurses. Kind nurses in the dialysis unit attached to MDU made time to do this for him. Unfortunately it was very stressful and apparently painful for him as the stitches were pretty entrenched by then. With lots of Kids Kicking Cancer power breathing and mama coaching him, he got through it, but there were a lot of tears from a kid who's pretty tough. 

[Photo Description: Ollie lying on the CT bed with his arms reading on a wedge above his head and his hands holding a small stuffed koala bear given to him during treatment by his friends Henry and Dylan. The IV with a coiled cord to the contrast to be injected is in his right arm.]

Although he doesn't like the contrast he's now a complete pro at both drinking the contrast and the injected kind, so had no problem with the insertion of his IV nor drinking a cup of contrast every 30 minutes for 3 hours! 

[Photo Description: Ollie poses with Quickly Koala  while waiting for his next scans in Nuclear Imaging at CHEO. His right arm is covered to protect his IV.]

Before scans and while drinking contrast we had scheduled an in person visit with his child psychologist in MDU and it was a pleasure to finally meet her in person after 10 months of seeing her exclusively online. 

The rest of the time we hung out in MDU's playroom doing crafts with wicki sticks and visiting with MDU staff who happened by. One child life specialist came over to say help and reminded us that she had been a student doing a placement at CHEO in oncology when Ollie was first diagnosed and now works there! She was so pleased to see that he was doing well. Unbelievable that it's now been 2 and a half years since this all began! 

[Photo description: Ollie getting ready to do a drop in at The Yard on his skateboard while instructor Jordan holds his hands until he is ready.]

Ollie missed one week or skateboarding due to the biopsy, but was insistent he was ready to go back the second week. He's progressed so much this year that it's amazing. To see some videos, go check out his Instagram account (cnib_ollies_hope)! Also our episode of AMI-TV's "We Are One" telling Ollie's story and how we all adapted to his blindness airs June 2nd at 8:30 pm. You'll see Ollie starting his skateboarding last fall and be able to compare how he's progressed! Here is the trailer. 

[Photo description: Hope sits on the kitchen wearing her and Ollie's CNIB Pup Crawl bib. Our new LG  SMART stove that can be voice activated and run from an accessible SMART phone so that Ollie can use it in future sits behind her.]

Ollie and Hope are also participating in the CNIB Pup Crawl again this year in memory of his friend Mason's Buddy Dog Queenie who became ill this year and had to unfortunately cross the rainbow bridge long before her time. 

In other developments, our old stove died and was going to cost almost as much as a new one to repair, so we had to get a new one. This is also part of Ollie's story now because we took the opportunity to research and buy a me LG SMART range. This is so that in future as Ollie agrees he will be able to use the active himself because the oven is voice activated with Google Home or Amazon Alexa and you can run it from your SMART phone which one day he'll also have. Since a stove lasts 10-15 years it made sense for us to do this for him to ensure accessibility. Just one more example of what we are learning about how to help him have an accessible life.

[Photo description: Cover of the children's book, "Ollie's Telescope" written by Samantha Smadella and illustrated by Kaitlyn Blanchard, showing a drawing of a bald Ollie standing on a black planet with a black dog beside him looking out into a multicolored universe with many stars and other planets.]

In other exciting news, two sweet Algonquin College Therapeutic Recreation students have written a book based on Ollie's story with cameos of other actual CHEO oncology patients, too. It was their end of the year project and they decided to self publish the book and give all proceeds to Candlighters Childhood Cancer Support Programs. You can pre-order yours here on Sam's Therapeutic Recreation website! 

The story is about Ollie who loves astronomy (creative license taken here so the story arc works better), gets cancer and loses his vision, learns through a therapeutic recreation specialist in hospital that he can still enjoy stars because each has a unique sound, then meets another boy at hospital who used to love skateboarding, but is now wheelchair bound because of his cancer. The boys trade telescope for skateboard so each can learn a new passion that they can still enjoy thanks to accessibility options. Hope makes a cameo in the book (and is on the cover), as does a brave CHEO kid named Sophia who is now a star in the heavens. This book is so positive and deals with cancer effects and death in the most beautiful ways. We are grateful to Sam (whom we met through the Snow Angels for CHEO Campaign this year) and Kaitlyn for their interest in Ollie's story, for making the kids in the story the brave, unstoppable heroes that they really are and for their generosity in donating all proceeds to help other kids like them who are still fighting. 

[Photo description: Ollie celebrates clear scans by viewing out a candle in a brownie.]

Two days after Ollie's scans our amazing oncologist Dr. Lesleigh Abbott called me to report on the scans. I was in the car running errands and as I held my breath she began with, "He's stable with no evidence of disease." Huge breath released. She's so used to this that she even waited for me to breathe before continuing. How difficult her job is when she has to deliver the bad news! I've been there with her and was so grateful for her compassion then, too. 

She also configured that she'd talked to dermatology and pathology about the biopsy results and they were certain that it was NOT any form of cancer or infectious disease. She did say they were still running a few tests to see if they could pinpoint what the spots actually are and they would follow up with us.

She then explained that what minor change there was in his scans just confirmed that they are now identifying his hip deterioration as Avascular Necrosis (AVN), which means that bone tissue is dying due to lack of blood flow. There are various treatments for this and it's not much worse, but we'll know more when we see the bone specialist in June. Also, they can see that his left eye that is still awaiting surgery thanks to the COVID backlog is experiencing more bleeding. So we've sent that off to his opthamalogist and I verified this week that it's been sent to his Retina specialist and next week I begin being more of the "squeaky wheel" to push for the surgery like I did before Christmas for the first. Otherwise all stable in his scans. Praise God for prayers answers once again and our incredible gratitude to all of you who sent us prayers and positivity! We are infinitely blessed.

[Photo description: Ollie lies on the bed of the bone density scanner at CHEO.]

Yesterday we were back at CHEO for bone density scans and xrays for the bone specialist and endocrinologist to take a closer look at in the coming weeks. 

We also had an appointment with Dermatology to follow up on their biopsy findings. They are fairly certain that the spots are leiomyoma.

"A leiomyoma, also known as a fibroid, is a benign smooth muscle tumor that very rarely becomes cancer (0.1%)."

They can be found in various places inside the body, but also on skin. They can be itchy and painful or not (his are not). If not itchy or painful they suggest not taking medication and just monitoring as it can lead to kidney disease. 

There is the genetic kind and random kind (just like cancer) and they'll do a blood test to determine if he had the genetic kind or not. They say it will be monitored through our oncology team from now on. They did say that they've checked all of the meds and treatments in his chart against it to see if there are any known causes, but came up with nothing. I inquired if there might be a correlation between it and his thinning skin in those areas thanks to prolonged use of Dexamethasone because of his relapses. They said they would check.

So just one more thing to monitor. Maybe related to the cancer and maybe not. Grateful it's not something worse, but sure wish results were always more definitive. 

Overall our results are great so we are thrilled and grateful and looking forward to the next steps. We'll share info from the bone specialist next month and tell you how we plan to celebrate his second re-birthday/anniversary of his transplant/second hero day for Abby. Until then, count your blessings, donate blood if you can and be well!