The story of Atlegile Ramontsha
Atlegile Ramontsha is a bright eight-year-old boy who is currently receiving therapy from our multidisciplinary team at Netcare Rehabilitation Hospital. I recently sat down with his aunt, Lerato Ntsweng, to chat to her about their family’s journey with a child diagnosed with cancer.
Question: How did you come to be part of Atlegile’s life?
Answer: I’ve always been in the picture since his first breath on earth. I had a miscarriage…when I lost my baby, Atlegile came. I was pregnant and my brother’s wife (at the time) was also pregnant. I’m the one who gave him the name “Atlegile”, because it means victory. The bond has been there ever since. There is a closeness I have with my family, so Atle has two mommies. I’m the aunt but I’m also the mom.
Q: Tell me more about Atlegile’s diagnosis.
A: It was about three years ago. He started with the headaches, ongoing headaches, they never stopped. We used to give him Panado and Calpol but the headaches didn’t stop. He would get dizzy spells and cry. The second stage was when he couldn’t keep anything down. Everything he ate came back up. We were thinking it’s just flu. We then took him to a doctor in our area who told us that it was flu and gave us medicine to take home. But it never stopped! Instead it got worse and worse and worse.
Q: Atlegile was in grade one at the time. When did you become really worried?
A: One day he (Atlegile) came back from school and said: “Mom (he calls me mom or owathu), every time I walk there is this dark hole in front of me and I can’t see”. When he said that I became scared. So I was like “okay, this is weird”. First it was the headaches, then the vomiting and now this. Then his eyes started crossing. One day I got a call from the school and they said that Atlegile fell. I asked the school why he fell. They said that he couldn’t walk. That’s when I really became scared. I immediately fetched him from school and we took him to hospital.
Q: What were you told at the hospital?
A: We saw a doctor there, and he said we needed an MRI. When we came back the doctor said: “Atlegile has (a) blastoma…it’s a brain tumour.”
Q: How did you feel? What happened next?
A: We were all very scared. The doctor referred us to a specialist at another hospital who repeated the MRI. She then said to us that there is increased pressure on Atle’s brain. She said she could also see the tumour and she needed to do surgery. The doctor said she would need to operate twice – first to relieve the pressure on his brain and then to remove the tumour. She did the operations and came back to us saying it’s not cancer. They did a biopsy and it came back saying it’s not cancer and we should not be worried.
Q: Did you think he was cured?
A: Yes. He was cured and we got to take him home. He still struggled to walk a bit but could play cricket…everything was fine. Then in January he went back to school. Soon after I got another call from the school saying Atlegile can’t walk.
Q: What were his symptoms at this point?
A: So at this point Atlegile couldn’t walk, he couldn’t see – his left eye was blind – and he couldn’t hold anything. His speech was also “slurred”. Again, we took him back to the hospital. The doctor saw him but she didn’t really do much.
Q: What do you mean she didn’t do much?
A: She admitted him but then she wasn’t there for the whole weekend. So we got frustrated and scared. This was all new to us. When we confronted her she told us to rather go home and find another doctor (neurosurgeon).
Q: How did you go about finding a new surgeon?
A: We went to Union hospital. There we met a very kind doctor who explained everything to us and referred us to doctor Labuschagne at Nelson Mandela Children’s Hospital. I took him (Atlegile) there and the doctor took one look at the MRI and said: “This is a very serious case, I’m not going to waste any more time, I need to go in.” He then did the operation.
Q: Was this Atlegile’s third surgery?
A: Yes, he did the operation from the back and opened up where the previous scar was. After the surgery the doctor called us in and sat us down and told us it was cancer. Now we hear cancer and we think, “this is a death sentence”. We were also blaming ourselves. But he reassured us that Atlegile was born with it and it wasn’t our fault. He then referred us to Professor Poole at Wits Donald Gordon Hospital for radiation.
Q: Tell me more about the radiation.
A: Radiation was only a month, but every day. It was very intense. He (Atlegile) had to wear a mask over his face. But his biggest struggle was the sound, he hated the sound. He hated the mask because he felt that he could not breathe. He had to stay still with his neck straight. He just hated the whole thing, he was scared and he cried every day. At that point I had to quit my job and focus on him. His mom was in Rustenburg and his dad was working. After radiation was done, we had to start chemo.
Q: How long was the chemotherapy?
A: It was done in four phases. The first three were fine. Atlegile only vomited once or twice. But the toughest one was the fourth phase. Now Atlegile lost all his hair including eyebrows and eyelashes. I had to explain to him why he was losing his hair, why he was tired, why he could not do all the things he used to before.
Q: Were there other children there going through the same thing?
A: Yes. The biggest source of information was from other parents whose children had been through the same thing. They could encourage us as they had been through the same thing.
Q: How did your family cope through this?
A: Unfortunately, in our culture, cancer is seen as witchcraft. My mom and my dad said: “But this is not from our family, nobody in our family has had cancer”. My dad struggled the most with this. We really had to explain everything to him.
Q: After chemotherapy, what was the next step?
A: After chemo we came here (Netcare Rehabilitation Hospital). This was March 2020 and then we got discharged because he (Atlegile) had to go for the second phase of radiation and chemo.
Q: This was all during Covid-19 and lockdown?
A: Yes. He had one month of radiation and then again chemo for about 8 months. Now he is (finally) done.
Q: Is he in remission?
A: That is what his doctor said. He said the scan came back clean. He just has to go for a follow-up scan in April this year.
Q: So you were the driving force when it came to getting Atlegile readmitted for readmission this year. Who is the network of people around Atlegile supporting him?
A: It’s me, Lerato, his dad, his mom, his grandfather and grandmother. We take turns to visit him so he doesn’t feel alone.
Q: Who supports you?
A: It’s my brother. Look, I do have meltdown moments, but when I’m down I can lean on my brother and then I give him support when he is down.
Q: What do you want people to learn from your story?
A: Please don’t say “ag shame”. It’s not “ag shame”. Come to us, ask us, we will tell you. We have gone through very difficult times but we have come out stronger as a family. We could not have done it without the help of your team and everyone involved in Atle’s care. We are very grateful.