To mark International Childhood Cancer Day Patch SA is spreading its digital wings by opening its online learning platform. The Patch Academy provides accredited CPD certificate courses on aspects of children’s palliative care especially relevant for South Africa. Are you a health care provider working in South Africa? The courses are open to doctors, nurses, social workers, psychologist, pharmacists, therapists and in fact anyone who wishes to learn how to provide palliative care to babies, toddlers, children and adolescents. The courses are accredited by The Colleges of Medicine of South Africa.
Ben and the Hawkes’s inspiring story
Anton and Angie Hawkes gave permission for the use of this story and image. This is not just Ben’s story but that of the whole family.
Benjamin Hawkes was just 10 years old when he was diagnosed with osteosarcoma (bone cancer) and over the next ten months, he underwent chemotherapy, limb salvage surgery and radiation therapy. A clear PET scan at the end of this arduous treatment was cause for celebration, but two months later it was found that the cancer had metastasised and was invading Ben’s lungs.
More aggressive chemotherapy and many difficult weeks in hospital followed, leaving Benjamin weak and uncomfortable with an open-ended drain inserted into his lungs. At that time the oncologist took Ben’s parents, Anton and Angie, aside and told them that there really wasn’t anything more they could do for Benjamin other than sending him to a different hospital for radiation that could extend his life for a short time.
It was and will always be one of the toughest and most difficult moments in our lives. We sat with Ben and told him the truth – something we had agreed on from the start – and his little face fell as he asked, ‘So I’m going to die?’ I replied: ‘Yes, my boy…’ We then told him that it was up to him what he wanted to do next. We could move him to a different hospital for more radiation or we could go home. Ben may have only been 11 years old but he answered, ‘I promised that I would beat this cancer and I did, but it came back and I’m just so tired. I just want to go home.’
Anton and Angie Hawkes
Surprised at their choice and reminding them that Benjamin would likely die within a few days without further treatment, Anton and Angie honoured their son’s wishes and with very little assistance arranged to collect the medical supplies and equipment needed to take him home.
Palliative care in action
Through a series of chance events, Anton received a phone call the next day recommending they contact Umduduzi Hospice Care for Children, a charity organisation that provides palliative care to children and families in hospitals and in homes in and around the greater eThekwini district. (The word ‘umduduzi’ is the isiZulu word for ‘the comforter’.) When Ben’s health seemed to improve and he outlived the 3-day prognosis from the oncologist, a concerned Anton found Umduduzi’s details online and sent them an email at midnight.
At 8 a.m. we received a phone call from Dr Julia Ambler from Umduduzi and she was at our house at 1 p.m. that same day.
Dr Ambler introduced herself to Ben. He instantly liked her because she spoke to him as an adult, never pinched his cheeks or rubbed his head, something Ben really hated. Over a cup of coffee, we had the first honest chat about palliative care, what we could expect and a conversation about death. The most notable thing to come out of this chat was that one should never give timelines about the passing of a loved one, as we found out with Ben living at home with us for almost another seven weeks. Dr Ambler advised us on what to expect in the dying stage, discussed extra pain medication to ensure Ben would be pain free as much as possible, and how we were all coping emotionally.
Ben continued to surprise us and we went on to have outings to our local beach kiosk, Crocworld and we even managed to go to the movies to watch one of Ben’s favourite sequels, ‘Guardians of the Galaxy II’. But more importantly, he was at home in his own bed with his mom, dad, sister, dogs, his guinea pigs, and his Lego.
Ben finally died peacefully at 2 a.m. in his bed at home surrounded by all those who love him…. mom, dad, his sister Abigail and dogs Teddy and mNini.
Anton and Angie Hawkes, Pennington, KwaZulu-Natal
Passionate advocates for “special time”
Having known very little about children’s palliative care before their son’s cancer diagnosis and the experience of his final weeks, Benjamin’s parents have since become passionate advocates for it.
There is a definite need to reach out to and educate doctors, medical practitioners and families about the benefits of palliative care; how important the last bit of dignity and sense of peace it brings for patients and families alike. Having the support of someone who understands what you are going through and reassuring you that you are doing the best you can do for your child, is invaluable.
Those last 7 weeks we had with our son was the most terrifying, heart wrenching, but most special time and having the support of Umduduzi, helped us immensely. The grief of losing a loved one never goes away and I know, two years on, that we still shed a tear almost every day but sharing Ben’s final moments at home as a family was, and always will be, very special.
Anton and Angie Hawkes
Children’s palliative care in South Africa
Patch SA is the national charity that supports the development of hospice and palliative care services for children like Benjamin and for all children with any type of life-threatening or life-limiting illness or condition and their families.
Despite the National Policy Framework and Strategy on Palliative Care being ratified in 2017, it has yet to be implemented and there is an enormous gap in the provision of education on children’s palliative care for medical and allied health care providers. Education in the basic elements of paediatric palliative care would ensure that children like Benjamin and his family would receive good palliative care from the time of his diagnosis, and not just in the last weeks of life.
NCDs accounted for 57.4% of deaths in 2016 while communicable diseases were responsible for 31,3% of deaths. According to StatisticsSA this confirms that South Africa is in the midst of epidemiological change.
According to the South African Medical Journal¹ the overall survival rates for childhood cancer in South Africa remain low when compared to international data. Greater awareness of the warning signs of childhood cancer can encourage earlier diagnosis and lead to improved outcomes for all ethnic groups.
Many childhood cancers are treatable with high treatment success rates between 70% and 80% in well-resourced countries, while approximately 80% of children with cancer in Africa die without access to adequate care. Whilst South Africa has an established oncology healthcare service, the infrastructure is overburdened, the cancer awareness in the primary healthcare service is poor, and widespread service delivery challenges exist. A 2014 research paper carried in Stones, David K., et al. entitled “Childhood cancer survival rates in two South African units”, quotes South African overall survival rates at 52.1%. ¹
CANSA’s CEO, Elize Joubert says: “It’s estimated that currently less than half of the children with cancer in South Africa are diagnosed and many of those who are diagnosed are already in the advanced stages of the illness. Early detection will go a long way in reducing the fatality rate, however this can only be done by creating greater awareness and instilling knowledge in parts of the healthcare system and with the public.”
Cancers in children tend to be different from those found in adults with most of them often occurring in the developing cells such as bone marrow, blood, kidneys and nervous system tissues. According to the recent South African Children’s Cancer Study Group (SACCSG) registry statistics, for 2009 to 2013, the five foremost childhood cancers in South Africa are leukaemia, followed by lymphoma (tumours that begin in the lymph glands), then brain tumours, nephroblastomas, or Wilms tumours – cancer of the kidneys – and then soft tissue sarcomas, which are tumours that begin in the connective tissue. Read more about the types of childhood cancers…
Early Detection is Key
Part of CANSA’s Childhood Cancer Awareness Programme is aimed at educating the public on the early warning signs and in South Africa, the Saint Siluan Warning Signs list is used as per below…
St Siluan Warning Signs Childhood Cancer:
S – Seek medical help early for persistent symptoms
I – White spot in the eye, new squint, sudden blindness or bulging eyeball
L – Lump on the stomach, pelvis, head, arms, legs, testicle or glands
U – Unexplained fever present for over two weeks, weight loss, fatigue, pale appearance, easy bruising & bleeding
A – Aching bones, joints, back and easy fractures
N – Neurological signs, a change in walk, balance or speech, regression, contiguous headaches with/without vomiting & enlarged head
The advice given to parents by CANSA should they have any concerns about their child showing symptoms, they need to seek medical help immediately. Children with cancer need to receive the right treatment, preferably in a paediatric oncology unit.
A young cancer Survivor, Thandi* and her mom Jessica*, were being rejected by their community. Jessica says: “The lack of knowledge and understanding in our village is extreme. The majority still believe that my child is contagious and can harm them.” CANSA’s TLC Staff in Kimberley stepped in to offer support and information to their community. (*Names changed to protect privacy)
CANSA offers a programme called CANSA Tough Living with Cancer (TLC) that supports not only the diagnosed child or teen, but also the family and loved ones affected by cancer, as well as children who have a parent with cancer. #CANSAtlc
CANSA embraces a holistic approach to include all aspects of physical, spiritual, psychological and social well-being.
CANSA TLC Offers:
educational school programmes
CANSA TLC Facilities:
Currently, five CANSA TLC facilities for children/teens and parents and families affected by cancer, are available:
¹ Stones, David K., et al. “Childhood cancer survival rates in two South African units.” SAMJ: South African Medical Journal 104.7 (2014): 501 – 504.
CANSA offers a unique integrated service to the public and to all people affected by cancer. CANSA is a leading role-player in cancer research (more than R12 million spent annually) and the scientific findings and knowledge gained from our research are used to realign our health programmes, as well as strengthen our watchdog role to the greater benefit of the public.
Our health programmes comprise health and education campaigns; CANSA Care Centres that offer a wide range of care and support services to those affected by cancer; stoma and other clinical support and organisational management; medical equipment hire, as well as a toll-free line to offer information and support.
We also supply patient care and support in the form of 11 CANSA Care Homes in the main metropolitan areas for out-of-town cancer patients; a Wellness Centre based in Polokwane; and CANSA-TLC lodging for parents and guardians of children undergoing cancer treatment.
For more information contact CANSA:
Visit www.cansa.org.za or contact CANSA toll-free on 0800 22 66 22 or email [email protected] – follow CANSA on Facebook | Twitter | Instagram. CANSA offers multi-lingual support on WhatsApp: 0721979305 for English and Afrikaans, and 0718673530 for Xhosa, Zulu, Sotho and Siswati.