Master V, a 4 year old sweet boy came with his mother to MNJIO & RCC in Feb 2019 and diagnosed with Neuroblastoma. He landed in ICU in the first few weeks of his admission with breathlessness. The PPC team was treating him for abdominal pain and knew their background. His mother is a graduate who settled into the role of a home maker taking care of her two children. The father died due to liver failure one year prior to the diagnosis and his family did not want to support them anymore. So the single mother with no work experience with the help of her brother was trying to handle the situation. The mother had many doubts and was struggling with loneliness and the team did their best to never miss following her up.
The child recovered from the ICU episode and went back to taking chemotherapy. But within few months it was evident he was far from getting cured. The reports suggested the same. This is when things got all the more tough for the mother. She has already been away from her 6 year old daughter whom she has sent to a hostel as she felt she needed to spend more energy and time with her son for him to get cured. He lost his vision at this point. To imagine a 4 year old losing his vision- I think they understand the world by looking at it and making connections. He would get startled at the smallest of touch or sound. The team had to work with mother and child to make him physically comfortable and emotionally secure.
Medical Oncology said nothing more to be done and handed him over to Palliative Care completely on 9 July 2019. The team made a plan with mother and the uncle to send the child home for as long as they are comfortable to take care of him in the village. Phone calls were done regularly as part of follow-up. However, as expected soon he worsened and mother was scared to take care of him any more at home. The opted to move the child to the Kukatpally hospice for end of life care on 22 July. The child when brought to hospice was in pain, confusion and still could not see. Medically, he was very challenging because his age and symptoms made assessment and optimization of drugs extremely difficult. Mother was suicidal and kept repeating that she has no reason to go on living if she loses her son.
The hospice team encouraged the mother to bring her daughter to the hospice who loved and missed her younger brother. He recognized his sister, but just kept on clinging to his mother. He passed away two days later pain free, in sleep Aug 7 2019.
In our bereavement follow up we found out mother was learning to be a tailor, currently busy with multiple family events. (Happy ones!) The sibling is crying that the hospice counsellor forgot her and asked her to speak to her.
We are sharing this to reiterate that PPC works not just with their patients but also the family members. Also, death does not just effect the one who is dying but those loved ones around them too.