Ringing the Bell: Part 3 -Our Experience

Our Experience

If you haven’t read Ringing the Bell: Part 1 - A fly on the wall, please do! You will see how drastically different our experience was. Click here to read Part 1.

It is no secret that COVID-19 has turned our worlds upside down. Everyone—cancer or non-cancer families— has felt the pains that this novel virus has caused. At the beginning of the pandemic, I honestly thought to myself, no biggie. It doesn’t affect our everyday anymore than cancer has. Boy, was I wrong!

COVID-19 created a level of complexity on hospital protocols pertaining to families with critically ill children. Where once my spouse and I were both allowed to be at every clinic appointment, every hospital admission, and/or every Emergency Room visit, after the breakout of COVID-19, many hospitals changed their policies to allow only one parent regardless of the situation, with a few children’s hospitals being the exception to this new norm. I understand that the hospital’s priority has been the safety of all their patients, but goodness, it has made our lives difficult.

Being a family going through pediatric cancer, you are in the hospital ALL. THE. TIME. We had weekly clinic appointments for almost a year. In addition to the clinic appointments, we had several specialist appointments as well as six solid weeks of daily radiation with anesthesia and quarterly MRI and CT scans. And unfortunately due to COVID-19, I was required to do it alone with a “One Parent/Adult Only” rule.

In the beginning of the pandemic, I was absolutely terrified that my son would inevitably contract the virus solely because of the required appointments in hospital settings. My anxiety heading to the appointments would boil and my body felt like it would explode. From Fear alone. And so on my car rides, I would tell myself,

“You are afraid. It’s okay to be afraid. This IS scary. BUT you are ok today. You cannot worry about what MIGHT happen. It has not happened and letting my body and my thoughts get worked up over something that has not happened is more than I need to handle. Breathe. Breathe. Release the tension in my shoulders and in my stomach. Breathe. Cross that bridge if you get there. But today, you are safe.”

I know when the pandemic hit, the common sentiment among the staff and the patients was that COVID-19 would no longer be an issue once the warm summer months came. For Texas, that really starts at the end of April, early May. The month of May came, then June, then July, and still the pandemic threatened the society at large. And still hospitals kept the one parent rule, much to our dismay. We went along with the very strict protocols because we understood the importance of keeping people safe, especially the vulnerable and most at risk. But never in a million years did we expect for this new protocol to stay in force for as long as it has.

As we approached the end of treatment, the question began to arise: Who will the hospital allow to be present for my son’s ringing of the bell? We are lucky that they allowed both parents to be present, but they would make no exceptions for the siblings to be present. We wanted the siblings present for the ringing of the bell too because my son’s cancer fight has not been fought alone. His siblings were very much impacted by the diagnosis as well and frankly earned the right to be present in the celebration of the End of Treatment. And needed to see the visible and tangible sign that we are transitioning to something different.

I understand the hospital’s stance on not allowing family members and see the necessity of the strict protocol, but it doesn’t mean I am not disappointed or sad about it. I had envisioned this amazing celebration with our family unit and our extended family all present at the hospital to cheer on my son as he ran to the bell to ring it victoriously.

Instead, it was pretty quiet. Low key. Hidden.

The day had finally come. He was done with all the scheduled chemo infusions on his treatment plan. According to his MRI, PET scan and CT scan, he had a full response to chemo, meaning the tumor was not visible and no visible signs of cancer were noted. He was given the green light to end treatment. He would get to ring the bell. An honor we don’t take for granted.

We waited in the small clinic room while our nurse went to gather his oncology team and any other available nurses and/or doctors. All the meantime, we were hyping up to my son that there was a surprise for him.

Finally, The nurse came to tell us that they were ready for us, so my son hopped into his umbrella stroller, and commanded to us that we push him in the stroller as he eagerly searched for his surprise. We followed our nurse as she led us to the end of the main hall where upon reaching a dead end, we took a turn into a smaller hidden hall with a locked door that opened to a smaller restricted area, reserved for personnel access only. The nurse waved her hospital badge to trigger the door to unlock and open to allow us through.

We walked through the staff door entrance while I pushed my son in his stroller, and we were immediately greeted by a row of friendly faces, including his oncologist and his dedicated oncology Nurse Practitioner. There were about ten oncology doctors and nurses present; people we met along the way at different points of his treatment. At the far end of the row,, one nurse held three small presents wrapped in whimsical wrapping paper. Next to her, our oncology nurse held a bag filled with small, shiny gold and silver ribbons bunched into pom-pom sized balls, slightly bigger than fist size.

Immediately upon seeing what his surprise was, my son hopped off his stroller and joyfully walked toward the bell with a pep in his step. Faster than a walk, slower than a run, but excitement in each step forward that he took.

My spouse handed the phone to the oncologist and asked him to record the moment for us. The oncologist happily obliged. After all, we no longer had the option of having our family record it for us and my husband and I both wanted to be in the video recording of this momentous occasion.

Once my excited child reached the bell, my husband reached down to pick him up so my son could reach the bell hung high on the wall. Once my husband, child and I were standing ready by the bell, the staff who chose to be present for this moment started to sing a song that ended with “Pack your bags, get out the door, you don’t get chemo anymore!”

The oncology staff ended with a round of cheers and clapping, then tossed the shiny ribbon balls into the air in our general direction. They encouraged my son to finally ring the bell, which he happily reached his little hand and wrapped it around the rope that hung from the shiny gold bell on the wall. He rung it loud and he rung it proud. The sound of the bell ringing filled the hall.

He did it. WE did it.

But I didn’t cry. I didn’t feel anything but numb. The lack of emotion was actually surprising to me. I couldn’t quite put my finger on it, but I knew this moment was more complex than a simple milestone celebration, and I needed time to process it.

Once he was done ringing the bell, he ran over and reached for the presents that awaited him. He opened each one with excitement and wonder! With every rip of the wrapper that would slowly reveal the toy hidden underneath, he would turn and look at me with a look that practically screamed “LOOK!!!” even though he couldn’t tell what the present was quite yet. But the excitement of knowing that a present lay waiting for him was more than exciting to him.

Now here is where our story will be unforgettably comical. Yes. You read that right. COMICAL.

When my son was done opening gifts, I walked back to grab the phone back from the oncologist who recorded the entire series of events that unfolded in the last 10-15 minutes. I thanked him as he pushed the “stop record” button and handed the phone back to me. The group was beginning to disperse to get back to work and sending us on our way with congratulations.

When the phone was placed in my hands, I heard the chime on the phone as though the phone had just been engaged to RECORD. I had a sudden “Oh No” feeling. That the chime didn’t sound right. I looked down at the phone and saw that it was now, in fact, recording. Then it occurred to me that maybe the doctor didn’t record any of the celebration.

I quickly reviewed the recording and realized the phone had stopped recording a minute into the whole series of events before ANY of the celebration. The last thing recorded is my child hopping off his stroller and my big, fat butt blocking the view for a second then end of video.

Oh. NO!!! What do I do? Do I leave it? Do I speak up? I know everyone here is pressed for time. But this is a moment in time that I want recorded.

I knew I had to speak up, and quickly, because if I left there without a video, I knew I would regret it later. So with the sound of my nervous laughter breaking the silence, I revealed that the phone stopped recording before it captured any of the events. The nurses apologetically agreed to record a second ringing of the bell.

I was so embarrassed that we had to redo the bell that I didn’t ask them to re-sing the song or throw the pom-poms at us again. A simple bell ring is what we have recorded.

I laugh about it mostly, because there is no sense in being upset. Accidents happen and technology will undoubtedly fail us at some point. I am just glad that I caught the fail while we had the chance to do it again. Even if all we have is the simple act of him ringing the bell. Because after all, it’s just symbolic. And the fact that he made it this far is what matters most.

My reflections

I was so proud, and am still so proud. But I still felt like our family was missing from that moment.

I should know better than to have any expectations in the world of pediatric cancer. I have learned to go with the flow and push back when necessary. This wasn’t any different, and there was nothing to push for here when COVID was still threatening those most at risk: immunocompromised children on the very unit we were standing in.

What it feels like to have your child ring the bell

I think I imagined ringing the bell would have a similar or more intense emotional response on me, much how I felt when I watched an unknown child ring the bell in the clinic in those first few weeks of our family’s journey through pediatric cancer.

I didn’t realize then what I understand now. Then, I thought that I would be crying tears of joy because we would be done. That cancer would be gone and never be a thought in the back of my mind. That we would resume life like before cancer. That we were done with cancer.

But now, I realize, that even though we are done with chemotherapy and radiation, that off treatment doesn’t actually mean we are truly done with cancer. We will still have quarterly scans to make sure that the cancer hasn’t relapsed, then after a few years, we could move to semi-annual scans. That in between scans, we will be hyper vigilant for every possible ache or sleep disturbance that could indicate our worst fear—a relapse.

That even though we are done with active treatment, we aren’t done with dealing with the side effects and aftereffects of the life saving treatments which has allowed us the blessing to ring that End of Treatment Bell.

Please do not misunderstand me. I am beyond grateful, filled with a cautious joy of “victory” that only a soldier, who has seen the tragedy of battle and lost comrades along the way, could experience the joy of finality in a battle, not the war.

We are so blessed and so glad that we were able to have our son ring the bell. For that, I can’t even explain the amount of gratitude my heart possesses for, first of all, the Lord and not far behind him, the oncology staff who saved my son’s life and gave us the greatest gift of all: time. More precious time.

I know now that ringing the bell is bittersweet. We celebrate that we have been given the gift to hold our child a little longer. To remain a family of five a little a little longer and hopefully much longer.

Ringing the bell means we endured not only the fear of losing our child in addition to watching him suffer phsyically and psychologically through treatment. It also signifies that our family suffered the many unseen losses that come with a pediatric cancer diagnosis. The entire family experienced trauma, and that takes time to heal those wounds until they become battle scars. We experienced the loss of all our children’s innocence. We experienced the loss of our normalcy in a way that we can never return to nor will it ever be as it once was. We have now entered into a phase of learning another norm: Post Treatment norm.

Ringing the bell doesn’t mean it’s over for us. It just means we were lucky enough to move to the next phase of maintenance, healing, troubleshooting, and learning what our new normal will look like. All while clutching our hands so tightly in prayer that our knuckles turn white, praying that cancer never returns. Praying prayers of the deepest gratitude for more time, which will not ever be taken for granted.

I leave you with a quote from Viktor Frankl’s book “Man’s Search for Meaning” which resonates my sentiment:

“Freedom”—we repeated to ourselves, and yet we could not grasp it. We had said this words so often during all the years we dreamed about it, that it had lost its meaning. It’s reality did not penetrate into our consciousness; we could not grasp the fact that freedom was ours”.

#endoftreatment #childhoodcancer #pediatriccancer #childhoodcancersurvivor #ringthebell