August 17, 2022
Public speaking has been a longtime fear of mine but earlier in the month I was asked to speak on behalf of the SickKids Foundation at the starting point of the 2022 401 Bike Challenge. This ride entails forty amazing men and women ride from SickKids in Toronto to the Montreal Children's Hospital to raise funds to help improve the care of children battling childhood cancer as well as to support their families and caregivers.
While my comfort zone tends to be behind the scenes (or the lens) I couldn't have dreamt of a more welcoming and supportive group of people with whom to share our family's story. That said, it was difficult for me to articulate without a few tears and my voice cracking from time to time. David was on the sidelines ready to take over if I needed, though truth be told, I'm not sure he would have been less emotional. When I walked down the steps to him after reading the last line of my speech he gave me the tightest, tearful hug and jokingly whispered in my ear, "You jerk!".
Everything about that morning was so special to both David and I but something that I will always remember is the lineup of riders that formed to hug me as soon as I was finished speaking.
Video Part 1 of 2:
Video Part 2 of 2:
The written version of the speech I gave is as follows:
Good morning!
My name is Kaitlin Black and I’m the proud mother of a little superhero affectionately known throughout Sick Kids and beyond as Benjamin the Brave. You’ll know him if you ever see him; he’s the little boy who attends every hospital appointment in a custom-made cape.
First of all, I want to thank you so much for being here today and for riding to “help improve the care and treatment of children battling cancer”, while also supporting their families and caregivers.
What a ride you’ve got ahead of you. I can only imagine what it’s taken to get to this point. No doubt a lot of support, commitment, consistency, adaptability and perseverance. In those ways there are a lot of parallels between your journey as riders and our journey as a Sick Kids Oncology family.
*Before I begin, I want to caveat that I will be reading our family’s story today. Sometimes I can tell it as though it’s not our own while other times it hits me that this is all happening to our little boy and I struggle to find the words. Because our experience at Sick Kids has been so incredible and you’re doing so much to help pave the way for the families that follow, I want to make sure that you hear our story in the hopes that it helps you to carry on when the going gets tough, knowing you’re making a huge difference.*
At the end of October our four year-old son, Benjamin, suffered an accidental kick to the outside corner of his eye. In the weeks that followed, the area around his eye got progressively worse. After nearly 10 visits to various medical professionals, 4 days after my husband tested positive for COVID and 2 days after Christmas, we were told to go straight to the Emergency department at Sick Kids.
At the time, Ontario was nearing the height of the fourth wave of the pandemic so for the safety of Sick Kids’ patients and staff only one caregiver was allowed to accompany each patient. With my husband having tested positive for COVID, that caregiver was me. Over the next 5 days Benjamin and I spent upwards of 40 hours at Sick Kids as some of the best and most experienced medical professionals in the world joined forces and worked around the clock to be able to provide us with a diagnosis. That week included the emergency room visit, ophthalmology consultations, a CT scan, visits from oculoplastics and eventually a pediatric oncologist.
The moment I heard the word “oncologist” I felt like I was going to throw up. Then came shock. While my memory of the moments that followed are blurred, I remember snapping into action, almost robotically. I plugged Benjamin’s noise canceling headphones into his tablet and put them over his ears, giving him a reassuring smile from behind my mask. He was completely unphased, happy to have so much screen time. I called my husband and put my phone on speaker so that we could both speak to the doctor. Me, live in front of our sweet boy, and my husband from his isolation quarters in our basement.
The doctor explained that the next step would be for Benjamin to undergo biopsy surgery and that they would like to do it as quickly as possible. The ORs were booked solid so the plan was to see if a bed was available to be able to admit us which would allow Benjamin’s name to get a priority spot on the surgical board. Unfortunately no bed was available and we were sent home but were assured that Benjamin would be prioritized and we were asked to return first thing the next morning. On what was the worst day of my life, I found comfort in feeling that the doctors were doing absolutely everything they could to get us answers as quickly as possible.
Waiting for the biopsy results was torturous. Prior to Benjamin’s surgery the doctor had suspected that the diagnosis would be sarcoma, however, when he phoned he explained that what Benjamin had was a very rare form of cancer called LCH. He went on to describe it as “quite treatable” and told us that Benjamin’s prognosis was good. Compared to the news we had been bracing ourselves to hear, this was on the “good news” end of the spectrum.
We were told what to expect in terms of next steps, who Benjamin’s oncologist would be and that a nurse would be assigned to his case. For someone like me, expectation setting is huge and this went a long way to making me feel prepared for the next leg of our journey.
Benjamin’s oncology team is one of the most experienced LCH teams globally, a fact confirmed by several doctors and pediatric oncology researchers we’re lucky to call family and friends. They are patient and knowledgeable in answering a long list of questions I bring to each appointment. In turn, they ask us a number of questions as they perform a thorough exam each time they see him. They’ve even taken the time to explain to me how to interpret Benjamin’s blood test results.
The nurse assigned to Benjamin’s case is beyond wonderful. She’s experienced, diligent, has great attention to detail, is responsive when I email her with questions and she is amazing with Benjamin. She matches his happy and enthusiastic energy and they often talk about two of his favourite things: dogs and superheroes. She even brought him a very special, early 90’s, Captain America comic book, still in the plastic, from her husband’s collection.
We’ve also been assigned an incredible POGO nurse. She helps us with anything from identifying support programs we qualify for, to educating Benjamin’s school faculty about his condition, to coaching me on how to talk to Benjamin about his cancer in an age-appropriate way. Thanks to her guidance, Benjamin can confidently speak about his disease in a way that is medically accurate when his friends ask him questions.
Over the past 8 months we’ve gotten to know a number of the nurses who are responsible for administering Benjamin’s chemotherapy and they are a group of very special people. They’re calm, friendly, empathetic and from the outside, are unphased and unflustered when a child is completely melting down.
While these are the people that we interact with most, there are a host of other amazing staff members who have made our experience at Sick Kids a positive one. The diagnostic imaging staff members that are compassionate and encouraging on scan days. The nurses in the recovery room that cautiously give in to Benjamin’s request for all 6 colours of Freezies after each surgery. The custodial staff member that always offers a warm hello. The kind volunteers who run the gift shop. The friendly baristas at Starbucks.
This is just a sampling of the wonderful staff we’ve encountered on our Sick Kids journey who have made our experience the best it could possibly be. I haven’t even touched on the care that goes into making sure the hospital doesn’t feel like a hospital. Because of those efforts, I have hope that years from now, when Benjamin is cancer-free, that he’ll remember his days at Sick Kids as a place where he was treated with care and kindness, he was served ice cream at 10:00 in the morning by a robot, he had the opportunity to play with toys, to make crafts and where he first discovered video games. For his fifth birthday he’s even asked that his friends consider donating to the Sick Kids Foundation in lieu of a gift so that other kids can have a similarly wonderful hospital experience.
Writing this was what I imagine will be the closest I ever get to writing an acceptance speech for the Oscars. There are so many people to thank and I’m sure if this were the Academy Awards the music would be playing, cuing me off stage. So, I’ll leave you with this story:
As you may have guessed, public speaking is very much outside of my comfort zone. After the team approached me to speak here today I talked to Benjamin about the opportunity. He told me he thought I should do it. When I explained to him that speaking on a stage, into a microphone, is a scary thing for me, my four year old child responded by saying, “If you’re scared, you don’t have it to it, Mummy. You don’t have to do anything that scares you.” With that, he made the decision for me. If he can fight cancer, I can certainly do this for the hospital that’s making his fight possible and for the riders who are embarking on a huge mental and physical journey to make it even better.
Sick Kids is not a place you ever want to be, but if you need it, like we do, you sure do feel lucky to have it. And we have it because of people like you. THANK YOU.