Kindness and Connections

As lovely as it is that it is World Kindness Week, I can't help but think that we're missing the point of being kind if we have to pick a week to get everyone to practice kindness.

Fortunately we have been surrounded by kindness and support everywhere we turn since Ollie's diagnosis in November 2019. From our best friends, to members of our community to even perfect strangers, people have gone out of their way to help us. Meal trains, chauffeuring our daughter to events and lessons, the school and church holding events in honor of Ollie and benefiting CHEO, and this week a veritable army of strangers was trying to help us find a lost stuffed llama (see previous post for context if you missed it). 

To my great surprise, my tongue in cheek tweet about a lost stuffie got retweeted many times and seemed to resonate with people. Wednesday evening the first replacement Llama Llama Blue Pajamas arrived at the hospital. Turns out friends of our oncologist, Dr. Abbott had one, saw our call for help and sent her LLBP the Second to make Ollie happy! 

A package from school also arrived Wednesday. It was a beautiful superhero cape handmade by one of the lovely teaching assistants, with a St. George Dragon on it and signed by everyone at school. This was for their Superhero for CHEO day where they raised over $700 in donations for CHEO in honour of Ollie. 

On Thursday, Ollie had an MRI under sedation. When we arrived to meet the anesthesiologist and MRI staff, they made a huge fuss over Ollie and what a celebrity he was and even asked him for his autograph (he very seriously complied)! Everyone was genuinely thrilled to congratulate him on his fame.

Later that day, Alex Munter, CEO and President of CHEO stopped by to meet Ollie (Alex and I had met before) and see how the hunt for Llama was going. He joked that we'd likely receive an army of Llamas after all the interest and told us if we needed anything not to hesitate to contact him. I've always admired him and how much passion he brings to every challenge he takes on. He has a way of making everyone around him feel important. We appreciated his visit and I told Ollie later that with his bravery, determination and focus I was confident that he'll be an important and kind man making things better for everyone one day, just like Alex.

The Llama that Shoppers Drug Mart sent Ollie also arrived at the house on Thursday night. Abby was pretty thrilled to receive it on her brother's behalf. Such kindness from a major corporation. Clearly one with people who care. And Shoppers was asked to help by Jill Promoli who is an advocate for getting the flu shot since the tragic death of her son Jude almost 4 years ago when he was only 2. She went to bat for Ollie immediately simply to bring him joy. What strength and compassion she has to help others after all she's been through. Truly kind.

I was also happy to get a message from Claudia at CTV who did the interview with us Wednesday and wondered how he was doing today and if we had received a Llama. She was so kind, gentle and patient during the interview even as he started to get impatient and say, "Next question." when he didn't want to talk about something anymore. He may be a politician or a press secretary yet!

We also had a wonderful visit with Mumtaz who is a dear family friend and one of Ollie's former daycare early childhood educators. She is hands down one of the kindest souls we know.

She brought news and gifts from his daycare at school...guess what they bought him...little llama friends for Llama Llama Blue Pajamas!

Today Ollie had no procedures or tests for a change, so he had a visit with his new CHEO Buddy, Steve. Steve is a first year medical student at University of Ottawa and applied to a mentoring program run by CHEO to spend time with kids to explore whether pediatrics might be of interest when he chooses a specialty and to help a CHEO patient have a friend to distract them while undergoing treatment. Since I was a Big Sister and Mario was a Big Brother for Big Brothers Big Sisters Ottawa before we met and had our kids, this seemed like a perfect program to help our son through a difficult time. We both know first-hand the value of mentoring youth. 

Steve was terrific and gentle with Ollie, navigating his blindness challenge like a pro. They played Beyblades where he marveled at Ollie's ability to identify each one of the sizes in his collection by feel. He also coached Ollie through building some Lego mini figures. I can already tell Steve has a kind heart, a great bedside manner and would be a great pediatric doctor. Can't wait to see what he does in future.

Ollie was also thrilled to be visited by his teacher, Ms. Sherri. She had come yesterday at his request, but when his MRI took longer than expected, she visited with me and then promised to come again today after walking the picket line for the teacher strike. Again, I defy people to tell me that educators aren't amazing and care more about money than our kids.

She has this incredible way of reaching kids where they are. She not only taught him some new ways to navigate the world blind, but she also built him up constantly and asked him sincere and gentle questions about how he was feeling about everything. His answers were the most honest I've heard from him. His psychiatrists could take lessons from Ms. Sherri!

She also insisted he demonstrate how he could get out of bed and move around the room independently. 

While Ms. Sherri was there, I got a message from Sophie at the CHEO Foundation telling me that some dungeons had been dropped off specifically for Ollie. I popped down to pick them up. Turns out the staff at a Calendar Club Store that is closing its doors saw his interview and thought he'd appreciate some brand new games, puzzles and a big huggable new friend...So very sweet of them to think of him at a time when they are actually losing their jobs!

So these are but a few of the many acts of kindness that have happened to us this week. I want to end with one final example that is too meaningful to me to be random or a coincidence. 

Anyone who knows me knows that I like to connect dots and find connections between things. It's a big part of what I do in my job and is sometimes hard to explain. A former boss and friend of mine who understands the power of this once told me that it was one of my greatest strengths and not that common a skill. I believe in connections between people, ideas, organisations, families, communities, policies...you name it and they're there if you try to piece things together. 

Tonight before I left the hospital to come and be with Abby, the nurses handed me another special package that arrived for Ollie. When he opened it, there was another little Llama friend for Llama Llama Blue Pajamas with a card explaining it was the only Llama that the donor could find. The card said that Louise from Brampton was sending it because she liked to do random acts of kindness and we could look her up on the internet if we were interested in why. So I just googled her and now I'm crying because the dots were connected for me. She does 26 random acts of kindness to strangers whose stories have touched her heart - one act for each life lost at Sandy Hook Elementary School. 

This was a tragedy that touched me deeply. My Abby was mere months younger than the little angels who were senselessly taken that day and my mama's heart ached then and now for all of them. I have followed those brave parents on social media since and tried to help them spread their messages far and wide. I have marveled at their bravery and determination to keep going when they must just want to lie down and let go so often. I feel that way often right now and my child is still alive. I feel like Louise' kindness was divine intervention to remind me that others who suffer more than we do have kept going and we can, too. 

So with 36 days under our belt and at least another 18 more to go with his next round of chemo scheduled to start Monday, we won't lie down, we'll keep going, fueled by the kindness of so many and one day we'll pay it  forward, too. 

"A little child shall lead them..."

Ollie had a day of ups and downs. Mainly related to his steroids and "hanger" as he waited for his lumbar puncture this morning.

A high point was a special visit from good friends who we'll call H and E. We got special permission to have them come when they were at CHEO for an appointment at another clinic where H is being followed. H is also a brave warrior who has fought many health battles and continues to with an incredibly positive attitude. H was just what Ollie needed and he was thrilled to finally see a friend whom he could directly relate to. H and E brought gifts from their family and from the grade 2 classes at their school.

The visit and gifts really boosted his spirits and were a nice distraction. 

Ollie decided to join his school online for their assembly today. The grade 2's including his class were singing and he was eager to hear them. 

While participating, he also received the student of the month award for exemplifying the gospel value of hope. I was pretty touched that his teacher still does everything she can to make him feel part of his class this year. 

 Ollie also asked her if he could be online with them as his Valentine's for his friends were handed out. So this afternoon after his LP she made him a full participant in it and allowed friends to deliver their Valentine's for him to his bag beside the computer where friends could come and say hi if they wanted. 

Despite his outbursts the other day, when his classmates today asked him about going to Sick Kids Hospital in Toronto, he calmly and matter of factly told them he'd be going in a few months to get stem cells and was still at CHEO. I was moved to tears by the kindness his classmates exhibited and was so proud of them all. One beautiful little empathetic soul whom we'll call B excitedly told Ollie that he and his brother had both spent time having operations at Sick Kids, told him if he had any questions about where stuff was to just ask him and assured Ollie that Sick Kids has the funniest nurses. The ability that kids have to normalize things for and mentor each other constantly amazes me and I was very grateful to B and H today for their help.

Getting back to the lumbar puncture, although Ollie did have  significant anxiety before and after it, we did get great news that there are no lymphoma cells left in his cerebrospinal fluid. They do intend to continue LPs less frequently now, but will need to as part of his next rounds of chemo and to keep checking that the lymphoma does not get back in there again.

The optomologists stopped by this afternoon and said that both of Ollie's eyes are now seeing light and his pupils are reacting. This is an improvement as last week only one eye was responsive but slow. They said this is good news and they'll continue to monitor him for the next month or so. By the 6-7 week mark they should be able to tell if any of the damage is permanent.

In the meantime we are working with physiotherapists and occupational therapists to get him stronger, to learn how to get around blind and to relearn anything he used to need sight for. 

We are hoping to get at least some day passes soon, but need to have the OT visit our house first to ensure he'll be safe. Ollie scoffs at this and says he's been "born and raised" in our house and doesn't need anyone to tell him what to do there. LOL

Mario went over to be with him again tonight so I could spend more time with Abby. 

Wishing all of you a Valentine's Day filled with people you love around you!