Benjamin’s Story
Angie, Anton and Abigail Hawkes share the story of how palliative care supported them through the last weeks of Benjamin’s life.
Benjamin with his family on the KZN South Coast
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 (spread) 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.
Anton and Angie, from Pennington in KwaZulu/Natal write, “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.’ ”
The oncologist was surprised at their choice and reminded them that Benjamin would likely die within a few days without further treatment. Nonetheless, 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.
Umduduzi Hospice Care for Children
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.
Anton and Angie describe what happened next.
“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.
He continued to surprise us
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 guineapigs, 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.”
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.
A need to educate doctors
They write, “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.”
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Nambi’s story
Nambi was a 13 year old who wrote this account of his journey with cancer for Patch. He was cared for by Umduduzi – Hospice Care for Children and Tracy Rawlins, who lives nearby. Despite spending much of the year in and out of hospitals and at home, Nambi insisted on learning for and writing his Grade 7 exams at the end of the year (2019) which he passed. Sadly, he passed away on 1 January 2020.
Nambi was happy to visit his friends at school to celebrate “Hats On for Children’s Palliative Care Day” in October. Tracy Rawlins from Patch is second from the right behind him.
Greetings!
My name is Thohonolofatso Tebele, also known as Thoni – but some people call me Nambi. I want to tell you about how I got sick and what happened after that.
How it started
It started when I had headaches and we didn’t take it seriously. This kept happening for days until I started vomiting then we took it seriously. The headache was so strong that it made me look like I’m a mad person. Every time when the headache started, I would also vomit, even if I didn’t eat.
The machine was broken
My mom took me to a hospital in Matatiele called Taylor Bequest. I stayed for days and they didn’t see any problem with me. They also took me to x-ray but still nothing, so they transferred me to another hospital in Umtata called Nelson Mandela. In Umtata they gave special pills for headache and vomiting but they didn’t work. So, they decided to take me for an eye scan but my eyes were fine. They said they will now take me for a CT brain scan but they said it will take days for me to go there because there is a long queue – a lot of people are waiting. After a few days, they saw that my situation was getting worse so they urgently took me for a CT brain scan and when we got there, the machine was broken.
Urgent CT scan
Mom decided to take me to KZN so we left Umtata because they couldn’t help me. We went to Kokstad Hospital in KZN and from there they transferred me to Edendale Hospital at Pietermaritzburg. When I arrived there, they did an urgent CT brain scan. We waited for the results. They said I had a brain tumour and water in my head that was blocked by veins because of the tumour so they transferred me to a hospital in Durban called iNkosi Albert Luthuli Central Hospital.
Surgery
They did a surgery to make the water from the head to flow into my body again and after that, I had to wait for another surgery to remove the brain tumour. I had to wait for a long time because after that surgery I had to go to ICU. So, I waited a month to do it and I did it and stayed only one day in ICU. Then I went back to the wards. Some people stay in ICU for weeks and some become sick after the surgery. And now I had to wait for the results to see if I had cancer or not.
Bad news
The bad news came. I had cancer. I didn’t know what to say. And I started doing radiation for 30 days while doing chemo once every week. It was difficult. They were treating my head and spine when they were doing radiation. It was painful but it passed. I was doing ok after that. A year passed, then this year the cancer was back and now it has spread to the spine and I can’t walk and I did chemo again this year for five months -six cycles and now I’m done.
I just pray that it doesn’t come back again.
Thank you.
Story update: We are sad to report that Nambi passed away on 1 January 2020, surrounded by his loving family. We are so grateful to his family for allowing us to share his story and pass on our sincere condolences to them for the loss of their beloved son. We are also thankful that Nambi was supported and his family will continue to be supported by the wonderful team from Umduduzi – Hospice Care for Children and from PatchSA’s Tracy Rawlins.