There are bad days and there are horrific days. Even in the ‘best’ of malignancies, one cannot predict which way it will go. You have to tread the slow and painful path to reach the other side, Dr Nita Radhakrishnan, a child cancer specialist, shares her experience about how important it is to make sure those patients, most of whom come from the poor strata, are taken care of in every necessary aspect, from diagnosis to survivorship.
Yesterday, one more kid passed the golden hoop of 5 years to reach the other side of cancer care. The team that stood with her heaved a collective sigh of relief as she got the ‘survivor’ label. We hope and pray that she lives a full life without any side effects of cancer or its treatment. She hails from Uttarakhand and was diagnosed in 2016 with lymphoblastic lymphoma. The entire treatment over 2 years needed a lot of patience and perseverance from both sides; the family and the hospital. There were bad days and there were horrific days. Even in the ‘best’ of malignancies, one cannot predict which way it will go. You have to tread the slow and painful path to reach the other side. Every blood test, every hospital visit, and every admission is a hurdle you have to jump to reach the finish line.
As a person working with sick children, I have realized that health undoubtedly is the biggest luxury for all of us. We do not have any control over who gets a disease or who doesn’t. In most cases, we don't even know why someone gets a disease in the first place. We also don’t have much control over who will make it and who will not. Many children whom we think will never survive, come out beautifully.
Cancer indeed is a great leveler. Although gaps do exist between high and low-income countries and between affluent and poor families, most of those are superficial or cosmetic. The biological probability of responding to treatment remains uniform. Things may not go as hoped for in the best of countries and the best of centers; often there are horrible infections that don’t give you time to react. Often there are dreadful cancers that don’t respond to anything.
When we start treatment for cancer, this is what most doctors tell their patients. That there is a process to it and timelines to follow. I often draw a mountain and tell them we are at the beginning of this trek uphill. We need to work together to reach the top. Everyone in the team should speak the language of hope and comfort. We need to continue the trek. The family has to put their life on hold for the duration of treatment; festivals, weddings, and parties will be there next year also. We try to compensate for lost childhood and replicate life’s little joys in our hospital wards.
It can be overwhelming for the hospital team as well. We go through this rite of passage of analyzing each and every child who did not do well. Abandoning treatment is perhaps the biggest tragedy of pediatric cancer care in our country. It is understandable if we lose a child to an aggressive disease. But to lose a child with a “perfectly curable” disease due to the ignorance of parents or relatives is unacceptable. A small part of you dies with each difficult patient. You are never the same as you were yesterday; you are warier in each situation, richer in experience, calmer as a person, and more restrained in your response.
As Gibran said, “the river cannot go back”. One has to keep going, with faith in a higher power, in yourself and in humanity and a promise to yourself to do your best. Each decision is vital; every child and every outcome stays with you. Happiness and sadness become parts of the same continuum. We learn to accept both; we pray. As doctors, we also realize that our profession is one of the biggest customer satisfaction portals. That at every age and stage of our lives, we are “rateable”. Most of them understand and stand with you in fighting the bigger battle of the disease. Many of them continue with you as your extended family.
For each young person entering this field of handling children with cancers; you will die a million deaths; with each complicated patient, with each stressful situation, with each CPR, and with each asystole. May you be born again and again, with the strength of knowledge, the courage to take difficult decisions, and the hardiness to hold on. And may there be health; for all our patients.
(The writer is Associate Professor and Head of the Department of Pediatric Hematology-Oncology, Post-Graduate Institute of Child Health, Noida. The views expressed by her are personal.)
