Rolling with Sarah

I had a great time at the ACCESS Annual Meeting. It started with a networking session on the Monday evening with drinks and hors d’oeuvres. I got to see some friendly faces and meet some new people. I was excited to meet Dr. Schultz, with whom I will potentially be working with on an upcoming project involving GVHD. Seeing as how GVHD is the reason I am in a chair, it is obviously of great interest to me. I am quite eager to possibly become a PWLE (person with lived experience) on his team. I also saw my lead from my days at CHEO, Dr. Donna Johnston. It was so great to catch up with her.

In the morning, the meeting began with opening remarks and presentations. One of these was about our preclinical modelling program. I helped present it along with Dr. James Lim and Dr. Rebecca Deyell. My component was on what cells that we need to model the patients’ cancer. While flash freezing is common in most hospitals and is useful for DNA, RNA and protein analysis, those cells aren’t living. I finished that statement with a big “this is what we don’t want” and everyone laughed. I then went on to explain that what we do want is  viable cryopreservation. These are fresh tumor tissues collected into media with a cryo-protectant. Our modeling team can then expand the tumor in one of the models, and increase the amount of drugs we can test. I also mentioned the PLWE input on the intake form. I explained how the family input section was our innovation, as families know their child’s case the best and can offer valuable insights that may otherwise be overlooked.

I got some great feedback after that presentation, which was awesome. But my job was not yet done. I was still nervous because I was asked (along with two other PWLE’s) to give a keynote speech later on that day. My first presentation gave me a bit of a taste of what to expect, but I was still very anxious.

Suddenly, I heard a familiar voice. “You are in trouble!’ it said teasingly. I turned to see Dr. Joerg Krueger.  Opps, I was supposed to tell him next time I was in Toronto so we could grab a coffee! You see, when I was having my transplant, I was his first patient in Canada. It was his first day in charge at the hospital and I crashed and went to the ICU. He didn’t know any protocols yet or what to do. When I got better and returned to the ward,  I made him decorated cookies to say sorry for making his first day so stressful. To this day he has a picture of them. He is now the head of the bone marrow transplant team at SickKids. I was so happy to see him! He is a huge reason why I am here today. He saved my life more than once.

For the next few hours, the meeting went on with several interesting sessions. There was different research projects, a session on poetry and treatment, Indigenous practices, travel and treatment, Car T-Cell Therapy, and much more.

Then it was time for the keynote speech. I had butterflies, but that was a good thing. If you aren’t nervous then you don’t care enough. I went on to tell my story. My cancer journey, how I participated in every study, my interviews, my accessibility work, and my involvement with ACCESS. I then spoke as to why PWLEs are important and what we bring to the table. My fellow presenters, Callum and Vinesha, also did an amazing job. I was just glad I got through it without forgetting what I wanted to say and embarrassing myself. When it is released I will post a recording of my speech on this website, I promise.

Once again, I was met with good feedback, which relaxed me a bit. I was even asked about some other potential speaking opportunities. Now I was free to enjoy the rest of the meeting. That was the end of day two, other than the dinner. ACCESS split us into small groups and we all went to different restaurants to mingle and get to know each other. We were lucky that our restaurant was right at the hotel. It was nice. There were plenty of options for all sorts of tastes. I had fun chatting to different people, finding out how they are involved in ACCESS and explaining my role in the organization.

The next day was the final day of the annual meeting. There were a few presentations but it was mostly an open discussion on where ACCESS is and where it is going. I had a few comments over the roles of PWLEs and how it is a co-beneficial relationship between us and care teams and researchers. We can all learn from each other. To round it out, there were some closing remarks and  then the conference was over.

Now for a few key points about accessibility (of course 😉 ) The meeting was held in the SickKids Peter Gilgan Centre for Research and Learning. I watched this building get built from a hole in the ground up, so it was nice to finally see what it is like inside. The doors had actuators, but awkwardly they weren’t at the right height and I couldn’t reach them. The soap dispenses in the bathroom were also unfortunately out of reach, causing me to need assistance.

In the auditorium, they had kindly reserved seats for us at the front table so I was able to roll right into my place. Unfortunately, it was a very tight squeeze for both me and my mother to fit in the space provided. Chair behind us made the spot difficult to maneuver into as well. Once nice thing was the sound. Each seat had a desk, and on that desk was a microphone you could turn on with the push of a button. When someone wanted to speak, they would press there button which would blink red, letting the moderator know they wanted to say something. This was great for those with hearing loss, as everyone was easily heard.

All in all it was a great annual meeting. I got a lot out of it. I learned many things and made some connections which could lead to some very exciting future opportunities. I look forward to continue being involved with such as wonderful organization. A special thanks to Stephanie Grover for inviting me to speak at such a prestigious event. I can’t wait to be even more involved in ACCESS projects and lend my expertise to making the cancer journey easier for the children of the future.