Right now, millions of children globally need palliative care. Palliative care is essential for cancer patients – including children with cancer. According to the World Health Organization, “Palliative care for children represents a special, albeit closely related field to adult palliative care”. It is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on quality of life for the child and support for the whole family. The International Children’s Palliative Care Network (ICPCN) advocates for children’s palliative care to be acknowledged and respected as a unique discipline within health care systems and provided by suitably trained and qualified people to all children with incurable or life-threatening conditions and their families, regardless of where they live in the world.
See how some of our partners are supporting pediatric cancer patients.
Kawempe Home Care – Defying the Odds (Uganda)
Muhamed is 18 years old and recently finished his Advance-level studies (high school) with exceptionally good scores that rank him as one of the top students in Uganda. What is even more incredible is that this young man is undergoing treatment for cancer which he has been fighting since he was in primary 6 (grade school).
“I have 7 brothers and 6 sisters. I first noticed pain in my right ankle in 2013, which I managed with painkillers. I sought medical care due to the pain and swelling and it continued to get worse, so I finally went into hospital. My mother sold charcoal in order for me to get further treatment and also borrowed some money from friends to meet the costs of staying at the hospital. A biopsy was taken, and it confirmed I had liposarcoma cancer.”
Muhamed’s initial treatment was unsuccessful and in 2021 he was referred to the Uganda Cancer Institute (UCI). He arrived with some books and clothes and the first night he slept on the verandah at UCI before being referred to New Hope Children’s Hostel.
“My mother stayed with me at the hostel during my chemotherapy. I was able to study for my exams in the nurses’ room. Once I had a great improvement in my leg my mother requested to go home as she was the breadwinner and needed to care for my siblings.
I am very grateful for all the support I have been given not only the New Hope Hostel but my school and the staff. I am still having chemotherapy treatment, but I have a dream of pursuing a degree in telecommunication engineering. There are still challenges ahead but I am grateful that I now have a future.”
Cancer does not discriminate, but access to treatment for children with cancer from poor rural communities does, as the families often cannot afford the accommodation, transport and food during the child’s treatment. This is why the staff at Kawempe are so passionate about helping children with cancer. Kawempe’s person-centered care not only focuses on physical care but also support to minimize the person’s emotional and spiritual distress and maximize their comfort and well-being. Services include meals, transport to hospitals, play therapy, music therapy, counselling and legal aid. New Hope Children’s Hostel has capacity of 30 beds for pediatric patients and their families while they undergo treatment at the Uganda Cancer Institute.
The Rocking Horse Project – Rays of Sunshine (Eswatini)
The RHP received a referral last year for patient Sarah* (not the patient’s real name) diagnosed with osteosarcoma. The doctors explained that the patient would be undergoing chemotherapy and the amputation of her left leg. We continually kept in touch with the patient and her mother, checking on them regularly and visiting them during her admission in the hospital. We visited after she had undergone amputation of her leg and along with the palliative care department at the hospital, provided the support they needed.
Sarah was a strong girl and rarely complained about pain or feeling sad. She accepted the amputation of her leg surprisingly well and was determined to continue life as normally as possible. She shared with one of the doctors that she had wanted to be a policewoman but knew that this may no longer be possible. When the doctor said she could have a prosthetic, she was delighted that her dream could still be a reality. With her approval, she had some sessions with a psychologist, and we were all glad she did as we felt this was necessary after this huge adjustment and moving forward.
The hospital requested that before discharge, she needed to have a pair of crutches, so we arranged a new set and brought them to her. What happened next was something we never expected – Sarah saw us from a distance entering the ward and her face lit up with a priceless smile as her eyes fell on the pair of crutches. She was so excited to receive them and quickly perched herself up in bed, took the crutches and hopped up testing them out. The same reaction was received when The RHP later obtained a wheelchair for Sarah with the assistance of The Luke Commission. The ease of her being able to move around with little assistance, made her feel happy and more independent.
One day The RHP team had an idea of doing a mini picnic as Sarah had been admitted for some weeks and one could see the toll of not being able to go home. Sarah said she wanted some takeout food so in a quiet area of the hospital out of the ward, the RHP team, Sarah and her mom had a mini picnic of fried chicken, chips and ice cream on a beautiful warm day. Sarah was discharged soon afterwards and was so happy to be back home and going for chemo sessions at an outpatient clinic.
Early this year after a follow-up visit to the oncologists, we were informed that the cancer had spread to her lungs and she was in need of end of life care. We were requested to especially support mom during this difficult time. This news broke our hearts as we had hoped she would recover well with the given treatment. Despite feeling so unwell and coughing, Sarah managed to break into a small smile upon seeing us. We prayed with Sarah and her mom before dropping them at the transport that would take them home, not knowing that it would be the last time we would see her beautiful smile. A few days later, the play coordinator called to ask how Sarah was doing and mom said she was feeling stronger, happier and that the coughing had subsided. Two days later, mom called the play coordinator to say Sarah had passed away. Going through so much and hardly ever complaining Sarah fought right up until the end.
Patients referred to The RHP are never just patients, but friends who are truly cared for. Sarah’s shy beautiful smile and her small giggles that matched her stature will always be missed.
In honor of Sarah and others, let’s always support and care for all the other children and their families walking this cancer journey and let’s continually raise awareness of the early warning signs of childhood cancer to beat this disease.