I will be completely honest in saying I was dreading going to CancerCon. The closer the dates got, the bigger the knot grew in my stomach. I spent a year crying almost every day while my son faced so many obstacles throughout treatment and grieving the way life was for him prior to his diagnosis and I was so over it at this point. The emotional release is sometimes so draining and aged me in a way I cannot begin to describe. The sole reason I went to CancerCon was for my son, Pike, who is in treatment for TCell Acute Lymphoblastic Leukemia. He wanted to participate digitally last year and was feeling too ill at the time. Having the opportunity to attend in-person this year meant a great deal to him – and well, as his mother and sole caregiver, I will do everything in my power to support him in each and every way.
Pike and I arrived early in the evening on the first day of Cancer Con. We drove from the suburbs of Chicago – it was a beautiful day and drive, and I have to say, the company was the best. We were pretty excited once we dropped our things in our hotel room and immediately went to our first sessions independent of each other. My session was for caregivers and Pike’s was for pediatric survivors. I was in my session for maybe 3 minutes when the tears started welling up in my eyes after hearing caregivers’ introductions and hearing glimpses of their loved ones’ diagnoses. I saw a text from Pike saying he was getting overwhelmed and he was waiting for me outside the meeting rooms. I went to help him and was thankful for the respite. We decided to take a moment for ourselves to get more acclimated for what we were about to experience and decided to join the karaoke session later that evening. It was so much fun being around all of the young and fun energy of everyone that attended and sang.
The next day, we went through the day’s agenda discussing which sessions we would join. We started with the first-timer orientation. We heard from each and every person their diagnosis and what areas of the US they were hailing from. After that session and the icebreakers, our nerves quickly subsided and the bonding began. Following that orientation, one Stupid Cancer staff member talked with me and I told her my hope was that my son could bond with some survivors his age that are still in high school because he has felt so alone (little did I realize at the time it was the CEO, Alison, who I was talking with!).
We followed with the opening session for the conference. We were deeply impacted by all the presenters and panels. I thought it would pertain to the survivors, but as a caregiver in this exclusive club, I took a great deal from this part of the conference and my life is forever changed for the better. My empathy runs deep and I was in awe of everyone that shared their stories and I also felt deep sadness from the speaker’s experiences and losses – yet I also felt the extreme moments of joy that come from being a part of this community.
This is something cancer muggles would never understand and would probably consider all of it to be terrible. I drew strength and insight from one message – because even though I have not experienced a cancer diagnosis and treatment personally, I lived in fear of sharing my son’s diagnosis and how much it’s impacted our lives that some would either see me as weak in my professional life or that they would distance themselves from me personally once they found out. And you know what? I came out of this session not giving a fuck about any of that anymore and I am ready to live out loud and be fiercely proud of every step of this process my son has endured and overcame, and all the beauty of the human spirit that can exist in such a messed up situation.
We missed our next sessions as we bonded with another Illinois native. We were interviewed by another participant that was leaving that afternoon to help her with setting up a similar group for people with rare diseases. We went to the exhibitors reception and were excited to do the scavenger hunt. The entire conference was one of balance – the focus of deeply moving sessions with lighthearted and love-filled moments with fun activities unrelated to cancer spaced throughout created a community and feeling of holistic support. I have never met such a beautiful amount of individuals in one weekend as we experienced during CancerCon.
As the weekend continued we learned a great deal together and in our individual sessions. I cannot tell you how good it felt to see my son bonding with other survivors his age and with the young adults. It meant the world to both of us! I saw a light in him I have not seen throughout his diagnosis. He felt seen! He felt unconditionally loved and accepted. He found his tribe after his diagnosis a year and a half ago when prior to the conference weekend he was always feeling so isolated. And the friendships we made with so many people including board members, exhibitors and other families and survivors, and hearing about those loved and lost, were invaluable to us.
We didn’t want it to end. And it didn’t end! It continued over my son’s group chats and social media the entire drive home. It has continued throughout this week. That is the good stuff. The really good stuff in this life. Human connections formed that cannot be broken. We are committed to attending again both virtually and in-person, spreading the word and helping anyone that may need help making it to these sessions too. Thank you Stupid Cancer for helping me face my own fears and quelling that initial dread I felt before I came to understand what a weekend like this would truly mean.
By : Pennie Major