There is an end to cure, There is no end to care!

Ms Vandana Mahajan, New Delhi

I read somewhere ‘Children with cancer, are like candles in the wind, who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet they flicker and dance to stay alive. Their brilliance challenges the darkness and dazzles those of us who watched their light.’ I don’t know who said this but this is one such story of little ‘Sarika’ (name changed for privacy) who dazzled everyone with her light until a gust of wind extinguished her 3-year-old journey on earth. She has since become the shiniest star in the sky!

It all started with a message from a fellow Palliative care colleague “Vandana, a 3-year-old baby has been diagnosed with retinoblastoma with extensive metastasis. She is in need of Palliative radiation to her eye. Will you be able to help her out?”

It was a baby!! And her traumatized parents needed palliative support. How could I have said no? I immediately agreed to do all that I could. But I had no plan in place and didn’t know where to start.

I called her parents to gain some clarity about the situation. The family was residing in a small village near Nasik in Maharashtra. They knew that their child was going to die. Sarika was in excruciating pain as the malignant lesion in her eyes and brain were spreading causing her eyes to protrude out. She needed pain relief and had no access to it. She had been on morphine (prescribed by her treating paediatric Oncologist from Chennai) but had exhausted the supply, and her parents didn’t know where to procure it from. Access to pain relief is very poor in India.

That is when I reached out to few very renowned Palliative care physicians, who very kindly offered guidance on what to do. I was able connect the family to a paediatric palliative care physician in Mumbai who immediately prescribed pain relief and other medications that were needed to keep Sarika comfortable.

She now needed urgent Palliative radiation for her eyes. I googled and found someone based in Nasik. I wanted to do all I could to help the child. I called up the hospital in Nasik and connected with the radiation oncologist there. He very kindly agreed to give Palliative radiation to the child.

While all this was going on, the psycho-social distress the family was going through was immense. Sarika, being a girl child, had no support from anyone but her parents. Her grandmother refused to provide monetary support to the parents to buy morphine. For the parents, to see their dying child suffer was heart-breaking. It broke my heart too. I had to step in and arrange for money to be transferred to the parents so that they could buy morphine for their baby. Even beyond this instance, there were multiple occasions when I had to arrange for monetary support for the family.

I was fortunate to meet Sarika once. She was adorable and full of life. Even when she was physically going through so much pain, her spirit to live was amazing to see. She was like a candle in the wind – flickering but stoic and lighting up everyone’s life she touched.

After all the medical interventions were done, her mother and I would have long conversations about Sarika.

During one of the conversations, I asked her mother “What do you want for Sarika?”.

All she said was “I can’t see her in pain. I die a thousand deaths when she tells me to run my hand over her tiny body because she is in pain. I know she is dying but can you ensure that she dies comfortably?”.

At this point it became very important to connect them for genetic counselling too, as Retinoblastoma is known to be genetic. I reached out to a very renowned cancer geneticist in the country. He agreed to do the genetic test free of cost for not only the baby but for also the parents.

By now, the parents were struggling to take care of the little one at home. That is when I suggested that they get her admitted at the Palliative care centre in Pune. I explained to them what a hospice was. Their response was an outright no.

Convincing them was a big challenge I faced. But finally, they agreed.

I called the palliative care centre and they readily agreed to take care of the child. Sarika was deteriorating rapidly and was on intra venous morphine 24/7. She got the best care while being at the hospice. Her parents told me that being there was the best decision they had made not only for Sarika but also for the mother, since Sarika’s mother, the primary caregiver was exhausted. Being at the hospice, helped reduce some of her ‘caregiver’ burden.

Sarika was now at EoL (End of Life). Her mother would give me distress calls late at night. During one such call at around 11 p.m. she said “Sarika is behaving strangely. She is telling me to let her go. What should I do?”. I still choke up on tears when I think of this.

My response “You are the most important person in her tiny universe. She is asking for permission to go. Please give her the permission to go. She is suffering a lot”. Her mother timidly said “Ok ma’am. She is suffering too much. It’s better she goes.”

A few days later I got the fateful call. Sarika had died. “She has promised to come back to me ma’am” her mother said. I choked up on tears.

The bereavement period!

This is, in my opinion, the most difficult part of Palliative care. I couldn’t have given up on the family at this critical time. We had numerous counselling sessions; many with the mother and a few with the father. All they wanted was to get Sarika back. They tried many times to get pregnant. But failed at each attempt.

By now the genetic report was ready. Fortunately, there was no gene anomaly detected.

Soon the couple was pregnant. Interestingly, the provided due date of delivery was exactly the same date and month in which Sarika was born.

The mother was carrying twins this time. Through her pregnancy, she would tell me that she wants one of the babies to be a Sarika.

Recently, I received a call from the father. They have been blessed with twins – a boy and a girl. My joy knew no bounds!! Sarika’s parents deserve to be happy after going through the trauma of losing their first born. Sarika had planted a rose bush which is now flowering. In the words of her mother “This blooming rose is a reminder that she is around. We will forever live with the fragrance of the joy she brought in our lives. It’s a blessing that she chose us to be her parents. We will always be known as her parents first and then of our twins”. For me personally the work that I do in palliative care had come a full circle: Death to Bereavement to Birth!

It is very important to remember that palliative care doesn’t end with the death of a person. There is an end to the cure, but there is no end to care!

I couldn’t have done this alone. I am grateful to Padmashree Dr MR Rajagopal, for guiding me all through out. I remain indebted to Ms Stella Jacqueline Matthew, Dr Rajam Iyer, Dr Rajiv Sarin and Dr Roshankumar Patil for their unrelenting support at various steps in baby Sarika’s journey. I also thank the NGO, Copewithcancer – Madat Trust and Iksha foundation for supporting the child financially!

About the Author:

Ms Vandana Mahajan has a post graduate diploma in integrative counselling.

She holds a certification in palliative care from Pallium India and another in Cancer counselling (Palliative) from the Kidwai Medical Institute of Oncology, and the Karunashraya Institute of Palliative Care Education and Research. She also has certifications in bereavement counselling from the Elizabeth Kubler Ross Foundation and Pallium India.

She has over 10 years of experience working with cancer patients. She has been working as a volunteer counsellor at Tata Memorial Cancer Hospital, Mumbai, for many years. She does in-person and online counselling for families affected by cancer, within and beyond India.

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