Abstract
At MD Anderson Children's Cancer hospital, there is a bell set up in the reception area. This bell is rung by patients with cancer who have persistently and faithfully completed chemotherapy or radiation treatment. The patients also ring the bell when their computed tomography scans come out clean and when they are deemed “Cancer Free.” This represents a new hope; this chance at a new life brings a smile and a tear to every individual who witnesses the event.
The patient's whole family gathers around and the bell chimes for any patient, however big or small he or she may be. The treating physician, fellow doctors, clinic nurses, research nurses, nurse practitioners, other patients, families waiting for their doctor's appointments, child-life personnel, and other staff all serve as witnesses. Frequently, extended families and friends also accompany patients for this event. It is videotaped, digital cameras are clicked, and congratulatory messages from all overwhelm the patient to cloud nine. Each patient is given a certificate of appreciation signed by the entire treating team. The patient is the happiest person in the world at that time. It is heartwarming, moving, and memorable to watch this rite of passage. For the treating doctor, nothing can be more gratifying than hearing the music of this clang.
It was one such day, wherein we had prepared for just such an event. Jenny (name, cancer type, and age changed to protect identity) was an 18-year-old girl with osteosarcoma (the most common deadly bone tumor afflicting children, adolescents, and young adults). She had undergone a rigorous and heroic chemotherapy schedule, during which her hair had fallen out, she had felt nausea nonstop, her appetite had disappeared, her taste buds had gone numb, and she had experienced numbness in her fingers and toes. She had weathered a below-the-knee amputation and had also mastered walking and running on her new prosthetic leg. After undergoing all her treatments, there was finally a light at the end of the tunnel; her scans came back clean and she had no evidence of cancer.
She came alone to that visit and thus wanted to postpone ringing the bell. She wanted to ring the bell with all her family and friends at the next visit. Somehow, the next visit ended up being 8 weeks later, as she had to reschedule her 4-week return visit because of school. It was a Wednesday afternoon and, as usual, we were having a very busy clinic. We had scheduled her bell ringing for that day and all of us had signed the certificate. “Just did it,” said one note; “Congrats on your braveness,” said another. “God bless you,” wrote yet another signer. “Strong work Jenny—Congrats and keep it up,” said my note.
She was supposed to have had her follow-up scans scheduled the previous day, but due to her late flight with all of her relatives, the chest scans were performed only that afternoon. The nurse informed us of her arrival at the clinic and her vital signs were taken. She was waiting in the reception area. Knowing that she had arrived, the person in the clinic who gets the certificates framed had spoken to the family and let then know that we were all ready for the bell ringing. She was the next patient to be seen. I checked for the scans at noon and they were still waiting to be loaded into the system to be viewed. I dictated another patient's note and checked again. I entered my login and password.
Every time I login and see the scans for every patient of mine, my heart skips a beat. I type in a hurry. The screen opens up and my heart sinks. Oh no. She has developed a metastatic tumor in her lungs. She was completely without symptoms. How could it be? I logged out of the system, took a deep breath, and checked her name and medical record number once again before reopening the screen. I heard the radiologist's dictated report and also saw the report flicker on the electronic screen.
Not knowing all this, the whole treatment team except for me had gathered around the bell. They were looking for me. I was paged that the whole family was waiting outside the clinic for the bell-ringing ceremony. I walked out with a heavy heart.
Should I break the bad news? Should I not let her ring the bell? Should I keep quiet now? What do I do? What should I do?
With a sense of numbness, a devastating sense of ineffectuality and disappointment, and no idea what to do, I kept silent. The words of Muhammad Ali in his book More than a Hero, flashed through my mind. …“Silence is golden when you can't think of a good answer.”
I walked up to the bell. Jenny was there. The nurse gave a speech and we handed the certificate to our young patient. She rang the bell 3 times. All those in the clinic cheered. I could see the genuine happiness on all the faces. I could see the innocent joy in all of the friends and family. She said that this was the happiest day of her life, and that joy could still be seen in the pictures from the bell-ringing event long after.
I just kept quiet and asked the family to walk into my office. I knew I was going to put a dagger in all of their hearts. Yes, indeed I did. Jenny once again became an active patient. Every time she came for scans, she had become worse. Her cancer was unyielding and relentless; impervious to all the chemotherapy and radiotherapy we administered. Eight months later, the cancer got the better of her. She died of extensive bone cancer.
Pondering this event now, I realize that my silence was golden that day. That split-second decision of mine to keep quiet gave her and her family the best moment of their lives. She even recounted later how thankful she was to have had that experience. A month after her passing, Jenny's family brought me a thank-you card, a tie, and a picture of the bell-ringing event. I could not accept the tie. If I had worn it, it would have become a noose around my neck, reminding me of the tragedy and giving me a twinge of pain every time I put it on. I did accept the thank-you note and picture, though.
Whenever I see the picture, I feel joy, although with the jolt of pain that went along with my decision to remain silent and let her ring the bell. Ten, 20, 30 years from now … that picture will be on one (or all three) of her sisters' walls, or on the bedside table, or on the mantle of the fireplace. And they will feel the joy of that moment spent ringing the bell.