Angie, Anton and Abigail Hawkes share the story of how palliative care supported them through the last weeks of Benjamin’s life.
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.”
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.
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.
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.
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.
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.
A story written by Phetsile Dlamini – play coordinator from The Rocking Horse Project in neighbouring Eswatini. Sindi’s* story illustrates the value of good palliative care and quality of life when a child is nearing the end of life. The Rocking Horse Project in the only children’s palliative care programme in this country.
Coming back from annual leave at the beginning of this year, I saw lots of new curious faces wondering who I was as I walked past their cubicles. When I stepped out of my room with the box of toys and colouring items, the children’s faces immediately changed to a more relaxed tone and an eagerness to play and see what toys I had. Every morning I go to each bed to introduce myself to the newcomers and check up on the others who are still admitted.
Do not touch my bed!
I usually sit on the child’s bed or stand close to interact well with the child, but this one girl saw me approaching her bed and she screamed “Do not touch my bed”. I stopped and seeing the tears streaming down her face, she told me she was in pain all over her body. I then introduced myself and told her that I work for The Rocking Horse Project as a play coordinator in the children’s ward after which she stopped crying and was interested that such a person existed in a hospital in Eswatini.
She missed her family
Some weeks went by and Sindi was still admitted and looking more despondent. She spent most of the time sleeping and if I did talk to her, I could barely hear what she was saying. She told me she was tired of staying in the hospital and missed her family. Her family lived in a town far away and weren’t able to come and visit her. Her dad was able to sometimes visit her but due to lack of space in the hospital, could not stay overnight and spend time with Sindi.
Moving to Hope House
Then came the day when the doctors discussed with me and the programme manager of The Rocking Horse Project the possibility of taking Sindi to Hope House (a hospice in Eswatini). We immediately oversaw her discharge and arranged her transport to Hope House. Hope House is a beautiful, tranquil faith-based hospice run by Caritas Eswatini situated in the central part of Eswatini. It is easily accessible and despite being in a busy city, as soon as one enters the premises, it seems like all the busyness disappears.
It felt like home
Sindi seemed relaxed and happy to be out of the hospital. Before leaving I looked at Sindi and she said she already liked the place and there wouldn’t be hospital staff touching her bed while cleaning causing her to feel pain with every movement of her bed. I knew Sindi and her mom would get good palliative care and support by the staff at Hope House. As they settled into their accommodation, Sindi asked her mom to phone her family and church members to let them know she was not in hospital anymore and they were closer to now pay them a visit. Over that weekend, family, friends and church members came to visit.
On Monday the programme manager of The Rocking Horse Project and I went to check up on Sindi and her mom. When we walked into her room, we saw Sindi lying down with a broad smile on her face. She excitedly told us about her weekend. She was so happy to finally see her family and the church members that came to visit and pray for her and her mom. When asked about how they found Hope House, she said the place was so nice, there is privacy, not like in the hospital where some of the patients and their relatives would stare at her, and there was plenty of space for visitors. It felt like a home. We left Hope House with relieved hearts knowing that Sindi was happy to be there. Sadly Sindi passed away later that day.
Thank you to Hope House
End of life care is never easy, but we look for the small joys in these situations. Being admitted in hospital for prolonged periods can become disheartening. We thank the medical staff for providing opportunities where a child can be taken to Hope House and we thank the staff at Hope House for their kindness and compassion.
* Not her real name