Ringing the Bell: Part 2 - To Ring or Not to Ring?
For Ringing the Bell: Part 1, click here.
Every child rings the bell. Right?
Nope, not quite.
What does it mean to ring the bell? Does it mean that you “beat” cancer?
No. It just means you are done with the treatment plan.
When a child starts treatment, their doctor has decided on a standard protocol for that specific type of cancer and/or has come up with a game plan- a mix of cocktails and other interventions like radiation, surgery, transplants, etc. That's known as the Treatment Plan or Map or Protocol.
Ringing the bell denotes that the child has finished the plan, and the oncologist believes that the Cancer is in remission. For those who have residual cancer left, the oncologist believes the cancer appears inactive and stable. The end of treatment doesn’t mean a child is done, though. They are far from it! They have years of at least quarterly appointments to check that the cancer remains in remission. Many still have specialist appointments to help address the physical damage from the cancer or the treatment itself, such as amputations, nerve damage, radiation damage, heart/lung/liver damage. The list goes on.
Ringing the Bell is celebrating a very BIG and critical battle. However, not every child has the desired response to chemo or their treatment plan. According to The Olivia Caldwell Foundation, seven children die EVERY DAY of pediatric cancer in the United States alone. Worldwide, 250 children will die today after a long and arduous fight for their life. These very special children ring the proverbial bell of victory; Victory over death, and living free from all the damage from cancer. Free from pain. Free.
As I joined the online community of parents going through pediatric cancer, I started to realize that not everyone feels that they should celebrate the End of Treatment by ringing the bell. I had never thought about the complexity of the emotions and the challenge for some in deciding whether or not to ring the bell. Not all children get to ring the End of Treatment Bell because sadly not all children will survive cancer. Some parents choose not to ring the bell in honor of those children whose lives were taken by this brutal disease.
I am not here to tell you they are wrong, nor that I am wrong in choosing to have our child ring the bell. Ringing (or not ringing) the bell is such a personal decision.
Reasons Not to Ring the Bell:
I can completely understand and empathize with the sentiment behind the decision to not ring the bell. But frankly, I didn’t realize it was a topic of mild contention in childhood cancer. If you are reading this and are equally perplexed, here are the top reasons I have understood why a family would choose not to ring the bell:
The first reason parents may choose not to ring the bell at the end of treatment is to show honor and solidarity for our fellow families who mourn the loss of a child to cancer. We create and form friendships along the way with strangers all around the world, united in our fight against childhood cancer. We all have children with different diagnosis and prognosis in our walk, so unfortunately, we know the reality that at least one of our friends will have a child that will be taken by this ruthless disease.
The second reason they may choose not to ring the bell is because the pediatric cancer community feels that children are needlessly dying to cancer. The cancer community feels overlooked and forgotten by the National Cancer Institute (NCI) because childhood cancer receives just under 4% funding from the NCI for research, development and treatment of cancer AND research and treatment for long term side effects. The rest of NCI funding goes toward adult cancers. The drastic discrepancy in funding for childhood cancers compared to adult cancers has left parents of pediatric cancer hurt and feeling indignant that too many children are needlessly losing their lives to cancer from this imbalance. If there was more funding toward pediatric cancer, there would be more research into treatment, resulting in safer and more successful options available to treat childhood cancer.
Feeling Guilt
Realizing that not everyone desires to ring the bell left me feeling guilty. Yes, guilt.
How confusing it was for me to navigate this decision as a parent- new to the world of childhood cancer. Is this how everyone feels? Would people think I am insensitive for hopefully one day celebrating my child’s survival? I pondered and I analyzed the situation, trying to understand both sides, and trying to understand what I felt was the right thing for us.
Luckily, I have my dearest friend, a fellow therapist, who would allow me the space to explore the facets of making a decision.
I, by nature, am a bit of a people pleaser. So the last thing I want is for people to think I am insensitive. But I personally couldn’t help but feel proud and inspired by all the videos of other children ringing the bell. They filled my heart with joy and hope. I found myself longing to share in that joy with my own family for our very own son.
Before learning my son’s tumor had a full response to chemo (putting his cancer into remission), I had decided that I would likely choose to have my son ring the bell. I also knew that I would need to be cautious about how I worded the meaning behind this milestone.
More than anything, I have wanted my son to ring the bell. I wanted him to experience pride in his valiant fight. I wanted him to experience the joy in knowing that everyone around him felt joy and pride in this HUGE milestone. I wanted him to see the crowd of people of all walks of life who supported him directly during treatment and/or directly through prayer and actions. Ringing the bell was something we built up as a big deal for him and made it a “goal” for him to shoot for. It also has served him as a reminder in those moments, when he was so physically sick or just psychologically worn out, that there WOULD be an end to this form of suffering. Chemo is no cake walk. It is brutal.
Near the end of treatment, when my son was feeling tired of the endless pokes, the nausea, the overall feeling bad, I would say, “Three more of these until you ring that bell!” He would give me the nod of his head which meant that he understood, and I would see a shift in his demeanor, as if he pulled up his pants and told himself “I. CAN. DO. THIS. There IS an end.” He would jump back into the ring, put up his boxing gloves, and he would stare cancer down with a look of determination to obliterate it. Determined.
Beating Cancer
Ringing the Bell somehow became synonymous with “Beating Cancer”. But, now as a seasoned “momcologist”, I am super averse to saying someone has “Beat Cancer”. My child has yet to hear the words “You beat cancer.” Frankly, I refuse.
These kids don’t technically beat cancer. Cancer has waged a war. There are many battles in a war. You may win a battle, but you don’t claim victory until you have won the war. Those who get to ring the bell, have won just a battle, not the war. How do you know if they have actually beat the invisible enemy that hides in their body at an undetectable size? How do you know if they will be one of the lucky children who do not ever have a relapse? Even if they don’t relapse, 95% of the children will have a lifetime of physical and psychological battles to still fight, according to St. Baldrick's Foundation.
Ringing the bell is not saying we beat cancer. Many kids will ring the bell and be told that they “beat cancer” and that they are all “done” with cancer. But I have thought about how that would and could psychologically impact a child if they had a relapse. So finding the wording that is encouraging yet grounded in truth is tricky, but I think the ideal way to communicate with a child.
I have told my four year old child that he will get to ring the bell if his body continues to keep his tumor away. I have explained that “we are celebrating finishing chemo as long as [his] body stays healthy. And as long as [his] body is healthy, [he] won’t need chemo again, so we continue to pray that [his] body can keep cancer out on it’s own without chemo. But for now, [he] won’t need anymore chemo.”
Maybe it’s a little over his head, being that he is only four years old now, but I don’t want to tell him “We are done with chemo!!! And that’s why we ring the bell!” It implies to a young child that we are done with chemo forever and we don’t really know if we are done with chemo forever. We can hope and pray for that to be our truth, but I want to set realistic expectations of the significance in ringing the bell and the reality of cancer.
Ringing the Bell for All
The bell symbolizes the finality of one stage: active treatment. It is a visual and tangible way to say “We don’t have pokies or chemo scheduled moving forward”. But ringing the bell isn’t only about the child either. Not entirely, at least. Yes, when a child has cancer, the child is the taking the biggest direct hit, but the entire family is impacted in the most unreal ways. Families have lost the ability to build upon the basic tenants on Maslow’s Hierarchy of Needs. Security. Security of health, of life, of finances, of a future as an intact family.
Ringing the bell is the way for the entire family to express the relief, the gratitude, the hope, the joy in the possibility of one more breath, one more day together. It is a family’s chance to hope for a more normal tomorrow, one more birthday, and one new day without the nausea, the isolation, the sacrifices they have each had to make while on treatment, and the endless pain that they have endured.
Ringing the bell is a chance for the child to be told by everyone around them that they are one incredible BADASS. And that bell celebrates their strength. It celebrates the strength of EVERY child who has had to fight with all their might. It celebrates the strength of ALL children who fought cancer. It celebrates the transition to a new normal without all the terrible chemo and other treatments.
Ringing the bell symbolizes the sacrifices that the cancer child has made, but also the sacrifices their siblings and parents and the extended family also made during treatment.
We know that marking the momentous occasion of ending treatment is important and it should be celebrated. Ringing the bell isn’t the only way to celebrate it. Choosing to ring the bell (or not) is not an easy choice for some, but the obvious choice for others.
When we ring the bell, the children who rang the proverbial bell are not absent from our minds. The memory of those children and their families are ever present. And our joy is still panged by the sorrow for those children and their families who haven’t been able to ring the bell for their end of treatment.
By choosing to have our child ring the bell, we honor his fight that reminds us to fight like a kid - relentlessly, with tremendous hope in our hearts and to live every minute to its fullest.
Part 3: Our Experience: Link coming soon.