World Hospice and Palliative Care Day - "My Care, My Comfort"
World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world and reinforce the following
· With palliative care, I can access the best standard of care and the highest level of comfort as I experience a serious health condition
· Palliative care ensures caregivers and family members receive the best support to provide care and comfort for their loved ones at home or in care facilities
· Health workers require the psychological, social and spiritual care and comfort that comes with palliative care services and training
· To ensure the best care and comfort is available to all, palliative care must be mainstreamed into my country’s health care system, including through Universal Health Coverage reforms
· Palliative care is an essential service to relieve pain and suffering related to COVID-19 and pre-existing health conditions
The Memory Wall
Stories of children who stayed at our Palliative Care Center - Subhita
The Boy with a case of Missing smile - The Story of Kamlesh
He, it seemed, had forgotten how to smile when he first came to us. The 16-year-old shy and reticent boy from Bengal was diagnosed with Burkitt’s lymphoma and was fairly dependent on his uncle and grandmother. His lack of knowledge of any other language than Bengali posed as a challenge but lucky for us we had an in-house Psychologist proficient in Bengali and a dedicated team determined to bring his smile back. And thus, began the journey of his treatment in AIIMS and Pain and was admitted in our Palliative care Centre for Pain and symptom management. Slowly, yet steadily Kamlesh did better, he started to learn and understand Hindi and even teach Bengali to other in-patients, he even actively participated in his recovery process and wanted to walk soon. Then came a day he started smiling again, laughing again, he was by every right the 16-year-old playful boy again. We never knew our Kamlesh was such a hearty boy! We were hopeful that he would be able to return to his home soon given his progress, but sometimes destiny has its own plans. By the time his investigation reports came back we realised that the disease was incurable now and so did Kamlesh. Death, the disheartening truth of Palliative care was upon us and we wanted to make sure he had a peaceful one. We provided him with best possible care, support and counselling to make him comfortable, but Kamlesh wanted to go home, back to Bengal. So, honouring his last wish we arranged for the same. He breathed his last there and left for his heavenly abode. Even though it was only for a moment, we were able to bring his smile back and so the lively smile of Kamlesh would stay forever etched in our Minds.
Our PubG Friend From Afghanistan
16-Year-Old Ahmad Fahim from Afghanistan would squeal with delight every time he beat our Project Manager Pankaj in a game of PUBG. Fahim was referred to our Palliative Care centre after his Blood Cancer treatment relapsed and was cared for in our centre for pain and symptom management under the care of the palliative care team. But soon his disease became progressive and we counselled his brother who was his immediate care giver about the same. The news of his condition reached back to his home and his mother longed for him to come back to Afghanistan. It was a challenge considering the nationwide lockdowns that restricted movement. We wasted no time in writing to Embassy office of the Islamic Republic of Afghanistan in Delhi for help and they were kind enough to respond quickly. Soon he and his brother were scheduled to leave on an evacuation flight and we made sure all arrangements were in place before they did. Dr Ramandeep Arora, our Visiting Pediatric Oncology expert at Subhita, went out of his way to ensure Fahim was fit to travel, going so far as to admit him for 2 days at Max Hospitals where he works, to transfuse blood and test him and his brother for COVID before the boarded the flight. While our Palliative care team provided the Comfort Care pack of required drugs like morphine, essential medicines and detailed instructions for his care back home. Finally, they were sent to Airport through our Ambulance service and they reached home soon without any difficulties. He spent his last days surrounded by his friends and family back home in Afghanistan.
Goldfish - The Story of Little Ayush
There was something different about this boy who was only 7-years-old; curious, intelligent quiet and very sensitive!Moreover, he had very challenging questions for our team, questions related to life and death, questions that puzzled us for days. Ayush was diagnosed with osteosarcoma with multiple metastases that was very difficult to cure and somehow, he was aware of his condition. That perhaps kept him withdrawn for many days.We were curious what made the boy so sad and so occupied, andduring one of his counselling sessionshe finally asked the questions that bothered his little mind; what is death? If he is dying? And whether it would be painful? Those were some difficult questions and we tried our best to answer them, perhaps some we did. Then one day inquisitive Ayush witnessed the death of a goldfish that lived in the aquarium of our PPCC. “Does that answer your questions about death, Ayush?” our Physician had asked and the boy smiled mysteriously. He never asked those questions again but strived to live more even his condition got worse. He celebrated his 8th birthday like a festival, like it was his last which unfortunately turned out to be so. He breathed his last in our Palliative care centre, surrounded by his family, while we ensured our best to keep him comfortable to make his transition from life to death painless. Our little goldfish taught us how to live even he knew what death is.
Ragini and Her Jokes
15-year-old Ragini, would always have jokes to share, but that was not the case when she first came to us. Diagnosed with ALL, Raginiwas admitted in our PPCCwith multiple complaints such as pain in joints, loss of appetite, loss of weight and moreover loss of interest in any activity. Our team of dedicated Physicians, Psychologists, Nutritionists, Nurses and Teachers put their best efforts to provide her with best possible care and within no time Raginiwas rid of all those complaints. Her weight and diet improved, so did her mood. She developed a knack for craft works and witty jokes that she would often share with the team of PPCC and her fellow patients. She continued to fight her Cancer with a lively spirit and received care from PPCC whenever was required. Stories like Ragini’s brings hope to our hearts and inspires us to do our best when it comes to holistic care, yet again reminding us that aim of palliative care is also total care.
The Boy From The Hills
15-Year-old Nikhil from Darjeeling was diagnosed with SynovialSarcoma in his left foot with lung metastases, he was referred to our Paediatric Palliative Care Centre for wound management and care. When we first met him, he had severe disability due to his wound, the pain made him uncomfortable and he seemed extremely malnourished. It broke our heartsto know the child was left all alone to fend and care for himself after a conflict in his family. His Palliative care support started immediately with Nurses taking care of his wound 24*7, the Physician monitored him closely, while the Nutritionist assessed and specially designed his diet that helped him achieve a healthy weight soon. He also continued to have regular sessions with our in-house Psychologist. He was recovering well and found a second home with us in Cankids. The nurses doted on him and his fellow in-patients would gather around him to enjoy the melody of his guitar. The Boy from hills caught our hearts with his subtle mannerisms and positive outlook. On August 2019 a surgery was done (Left posterolateral Thoraocotomy and left upper lobe matastectomy and lower lobectomy) in which the metastatic part of lungs was removed. He was cared in our centre for post -surgery recovery, even though he was stable his waninghealth was starting to show. After a while he wished to return back to Darjeeling with his Maternal aunt who continued to care for him until he breathed his last. His passing away left us with a sense of injustice and many bittersweet memories, the only consolation being we were able to care for him the way he deserved even if it were only for a short while. The memories of hisdelighted smile whenever he played his guitar would be forever etched in our minds.
They are fascinating creatures; the bumblebees. Soft and fuzzy they hum around bringing about life around themselves wherever they go and our Ravina got the nick name for the very same reasons. 16-year-old Ravina had been receiving treatment for her Osteosarcoma since 2016 from AIIMS and was referred to our Palliative care centre by one of our Patient support Group members back then. From time and again she was admitted to our Palliative care centre whenever she required treatment support or pre and post-surgery care.Her presence was unmissable whenever she was around and the PPCC would suddenly become a lively place with her continuous chatter, melodic laughs and dramatic stories. But when her treatment relapsed, we got ourselves worried and our apprehensions soon came to life. Ravina seemed withdrawn and quiet. It took time but with the continuous care by our Physician and nurses she was able to revive her spirits and health, the assignments given by our teacher kept her occupied, the nutritionist made sure she ate healthy, wholesome food and the visits to the Psychologist eased her troubled mind. Our Bumblebee was humming again. She takes charge of the children squad of the PPCC and is dotingly referred to as Ravina Didiby her little army. Recently she went through surgery to resect nodules present in her lungs and continues to receive her treatment from AIIMS as well as Palliative care from our centre. She’s responding healthily to her treatment and her liveliness make our hearts hum with optimism.
Have A Little Faith - The Story Of Afsana
Our relationship with the Divine has always been a puzzle. But it is in trying situations indeed our faith in divine goes through a difficult test. Some come out strong while some abandon their faith altogether, Afsana though had a different advice to give, “Have a little faith”, she would tell her mother. The 19-year-old girl from Delhi had a long battle with Ewing Sarcoma for years and often times it was her confidence in Allah that gave her the immense courage to fight it. Palliative Care is also a spiritual journey and with Afsana we charted that road as well. Even though her condition deterred, Afsana’s faith never. Perhaps it was the same faith that gave her courage to take difficult decisions concerned with her End-of-life care. She decided to not to go for palliative amputation and wanted her treatment to focus more on pain relief and quality of life as and when her condition worsens. She was not in best shape but yet she wanted to go home for Eid as her last wish. It was a difficult feat to achieve since it was the initial phase of strict nationwide lockdown that restricted movement. But we knew we had to honour her last wish anyhow. We arranged for an ambulance, made sure she had a home care kit and taking permission from concerned authorities we were able to successfully send her home. Unfortunately, it was shortly after the Eid celebrations that Afsana left us to be one with her divine, forever immortalizing the memories of her ever-determined smile and her undying conviction in God.
It is often in daunting situations we know how brave we are and 7-year-Old Ganesh was about to find out very soon. Diagnosed with Osteosarcoma Ganesh was admitted in PPCC, the size of the tumour distressed him so much that he won’t even look at it and often woke up screaming at nights. His reports suggested that in order to stop his Cancer from spreading his tumour was to be amputated. Understanding his distress, the Physician and the Psychologist took turns in counselling him about his Cancer and the course of his treatment. The Hospital dolls played a major role in easing his anxiety and he even adopted one of the dolls and named it after him. Even though he was scared, the little boy managed to pull up a brave face and with the same bravado he went in for his surgery. “How do you feel now?” One of our PSG’s had asked him after his surgery and if we are to believe Ganesh, he never felt so relieved or light before!Thus, how a boy named Ganesh, from a small village of Jharkhand learnt how to be brave and taught us an important lesson on the same. He still continues to fight his Cancer with the same bluster and liveliness as an inspiration to us all.