Reboot Fate, Kanika Is Here!
© Dr. Rajas Deshpande.
At 12 years she was on the top, an athlete who also won the scholar badge for three consecutive years and special honors at her school. Just then, a rare neurological condition played havoc in her life. She had multiple tumors, suffered a paralysis, was wheelchair bound for over two years. Then she suffered from depression, suicidal thoughts, high blood pressure, and multiple health issues which sometimes threatened her life. She had to leave school. She suffered bullying by kids her age, she had severely painful muscle tears that made it impossible to move hand and leg. Many hundred blood tests, some invasive procedures like lumbar punctures, and even a biopsy were all inconclusive. She also went through medical horrors: rude doctors, huge expenses and uncertainty. Her diagnosis is still not fully established.
But her status as a winner in the battle with fate is well established. Meet Kanika Kesri. She walked again after two long years today.
In August 2015, Kanika started having fever and severe headaches, and started becoming weak. Lot of tests were done, and she was found to have a tumor in her abdomen. A surgery was planned in Delhi, she was taken there. The specialist decided to first biopsy her tumor. The biopsy revealed a possibility of tuberculosis, so anti tuberculous medicines were started. She developed paralysis of the face and eyes, nothing could be done as the only medicines that could improve her condition – steroids- could cause dangerous worsening of her tuberculosis. In December 2015 she developed weakness in the left leg and could not walk. An MRI done then showed that she had developed multiple tumors in the brain and spine. She was then diagnosed with the most dangerous and often fatal form of tuberculosis: MDR (Multi Drug Resistant) Tb.
She was started with additional medicines and her parents were told that nothing more could be done. Her condition worsened during one of the lumbar punctures and she became bedridden, almost completely dependent. Someone told her father one of the worst medical possibilities: that this could be some form of cancer.
One of my earlier patients, Mr. Rahul Agarwal, brought Kanika’s father Mr. Pankaj Kesri to me in a devastated frame of mind. Lost in uncertainty, extremely angry at the behavior of some doctors, and frustrated with the expenses while being away from the job for a few months, he was still very polite and humble.
Her case was indeed baffling. I went through all the details, involved my colleagues at Ruby Hall Clinic, and even some of my teachers in Mumbai. The answer was almost the same everywhere: don’t know what this exactly is, but don’t stop the anti-tuberculous medicines.
Something was wrong, the girl was deteriorating in spite of taking the tuberculosis treatment. In a discussion with her parents, when her father said he had complete trust in the way we were treating her, I put forth an option: to give Kanika steroids, and if she improved, to consider withdrawing the anti-tuberculous medicines. This involved a serious risk to her life if her presumed tuberculosis worsened. With a very heavy heart, her family consented.
We started steroids. Kanika improved. We stopped the tuberculosis medicines. She continued to improve. She could now stand with a walker. Unfortunately, twice during physiotherapy sessions, Kanika tore her muscles: once in the thigh, which made it impossible for her to walk. She was bedridden again.
Till this time, Kanika was all positive, vigorously working to recover. The long illness now started to affect her mind. She became depressed, her sweet smile vanished. She tried to join school, but isolation and bullying worsened her mental agony. She started having suicidal thoughts. Very mature for her age, Kanika decided even in that condition that she was going to defeat the situation. She confessed about her thoughts to her parents. We arranged a counsellor for her. Just as Kanika started to recover from depression, the side effects of steroids started to come up: weight gain and high blood pressure. New blood pressure medicines were added. There are some alternatives to steroids, but she did not tolerate them.
Kanika wanted to study further. She joined home schooling, an excellent option made available by the central government, through NIOS (National Institute of Home Schooling).
One of the most complicated cases I have seen in this young age group, Kanika suffers from a very rare autoimmune condition. Her immune system has some dysfunction that causes multiple tumors in her body, these tumors usually resolve with steroids as they suppress immune system. The closest condition that resembles this is known as Neuro-Sarcoidosis, but some of Kanika’s tests for this were negative too.
Kanika’s parents chose to always come across pleasant and polite. “I know my daughter’s health is above all my complaints. I have chosen to concentrate on the positives” Mr. Pankaj Kesri says. Kanika’s mother Mrs. Rajni had to face a double-edged problem: while adolescent Kanika developed many ups and downs in her moods, Mr. Pankaj Kesri was transferred out of Pune. Mrs. Rajni fought alone on many fronts, while also looking after Kanika and her elder sister Kritika, who they call their pillar of strength.
It all was rewarded today, when Kanika walked without support after almost two long years. I was so happy with the miraculous moment, that I called upon my CEO, Mr. Bomi Bhote, who has always encouraged highest standards of medical care, leaving no stone unturned to bring it under his roof. He was so happy to see Kanika walk again, that he recorded the moment himself. “My wish is to see you run” he told a smiling Kanika.
We learnt a lot: many a times, some patients tolerate a lot while facing medical issues: the worst being a rude doctor. We doctors must ourselves ensure that we offer the best compassionate counseling to each such patient before we demand their faith and trust. It is never automatic. The process of medical care is an ongoing one, and it must be guided by a single principle: decision making in the best interests of the patient. A lot of study and awareness of medical advances on a daily basis is essential.
Kanika to us is an example of exemplary courage, grit, maturity, positivity and patience. She is a role model for anyone who is going through a negative medical phase. May she get back to normalcy soonest possible, may she recover completely, may she achieve whatever she sets out to achieve. She has proven many times over till now that she is a born winner.
In the beautiful moment that Kanika walked again, I found the blessings of my parents and teachers.
© Dr. Rajas Deshpande
PS: Thank You, Ms. Kanika, Mr. Pankaj and Mrs. Rajni Kesri for permission to share this story of courage.
Please share unedited.