Trigger Warning, because that is what you are supposed to do is warn people when you are about to talk about something that could “trigger” an emotional response, right? But how could you not get emotional talking about pediatric cancer and the atrocities children face fighting the number one killer by disease for children? I guess the warning here is that my viewpoint may not be a popular one, however, I have talked with a few other oncology families who feel the same and after a quick google search, I see it is a hot topic so it needs to be talked about.
The Gold Bell began as a tradition to signal the end of a cancer treatment, be it chemotherapy or radiation. It is a way to celebrate the difficult journey a patient goes through battling a ferocious beast. I certainly don’t want to take away from the journey however I believe some mistake the ringing of the bell with the end of cancer and it is simply not so.
Anne Katz, Ph.D. nurse and author of the book “After You Ring the Bell…10 Challenges for the Cancer Survivor” says, “while the end of active treatment, be it chemotherapy or radiation therapy, is certainly a milestone, it is NOT the end of treatment or side effects for many.”
For our family and our 6-year-old specifically, the bell was quite a topic of conversation. As parents, we knew the odds of relapse for Ewing Sarcoma were high and because of scar tissue remaining Finn would never get a ruling of NED (no evidence of disease), what every cancer family longs to hear at each scan. We explained to Finn that the bell ceremony was a celebration of the end of chemo and he was excited to have cake and a birthday-like celebration. We were so very thankful for the support we received from our family and our community and felt this celebration was a win for them as well. We are so grateful for the staff at our hospital and child life services to put the celebration together, after all it was a celebration for them as well, they cared so lovingly for Finn and our family through treatment. On the outside we cheered and celebrated along with them, while on the inside scared to death.
What about those that aren’t finishing treatment? I must say it was a little uncomfortable celebrating while others were still fighting. And the dreaded r-word? Relapse.
On May 20th, 2019 Finn rang the gold bell signaling end of chemo treatment. On August 28th, 2019 Finn relapsed. What do you say to your child when they say, “but mom, I rang the bell.” I then knew first hand how it felt to hear anther ringing the bell as our room was directly across form it. I thank God whomever it was that day that rang that bell will never have to look back, but it stung nonetheless.
It was when I saw the drawing attached to this pot with permission from the very talented Agnus Olsen of I Draw Childhood Cancer and it shows the amazing team of support holding up the child reaching the bell that I really understood the magnitude of the celebration and what it means to the village that surrounds you during treatment. I especially love how he purposefully has the child just shy of reaching the bell as to include all fighters, whether they reach that celebration or not.
In retrospect, perhaps we could have waited until Finn was older and could understand and choose for himself but I am so very thankful that we were able to celebrate with everyone.