Children’s Stories

Nambi’s story

Nambi is a 13 year old who has written this account of his journey with cancer for Patch. Nambi is presently receiving care and support from Umduduzi – Hospice Care for Children and also from Patch Training Coordinator, 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). We were thrilled to hear that he passed all his exams. Congratulations Nambi – you should be so proud of yourself!

 

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.