Venus’ story: Diagnosed with a brain tumour at 10 years old

Venus was diagnosed with a brain tumour at just 10 years old after her parents noticed she was struggling with her eyesight. She went on to have chemotherapy treatment at the Royal Marsden hospital in Sutton over the next few months.

While at hospital, Venus missed being away from school. She wanted to let her friends and classmates know why she wasn’t there so wrote a letter for their teacher to read out and let everyone know where she was and why…

“The way we started to discover that there was an issue with her eyesight was because of a few different incidents. During the Covid lockdown we began to home-school Venus. We were doing all of her home-schooling activities on a large screen, desktop computer and every now and again Venus would comment that she was unable to see some of the words and drawings on the screen and she’d ask me to enlarge the images. A few days later she’d ask me to enlarge something else but each time I couldn’t work out why she couldn’t see these things.

“We live very close to the Downs and we have two dogs. We often walk them across the Downs and through the forest.  If Venus was walking on my right-hand side, she could walk with a gap between us and not bump into me, but if she was on my left-hand side, she would be constantly bump into me. I would joke and ask her ‘why do you keep bumping into me?’ and she would say, ‘I didn’t even know that I was.’ Unbeknown to any of us Venus was slowly losing sight in her right eye.”

Her parents requested for Venus to have an eye test to check if everything was ok with her vision however, due to the lockdown, they weren’t able to get a face-to-face appointment.

“Venus started to say that she was experiencing headaches so we really started to push for her to have an eye test. We eventually did get the eye test but not until January 2021. They tested her left eye and discovered that some of her vision had been lost but after testing the right eye, we discovered that a large percentage of her vision had been lost. The hospital team referred her for an emergency MRI in London at the Evelina Hospital.”

After the test, Venus’ parents were asked to go to Guy’s hospital, where they were told she had a tumour behind her eye and that she would need to start an 85-week course of chemotherapy treatment.

“Everything was very surreal, we didn’t know what was going on, we couldn’t really process it. Venus was asking ‘why do I have to go back to London? Why do I have to have an operation?’ it was hard for her to comprehend. Michelle and I both found ourselves asking … ‘How could this have happened? Were we at blame? How did we not pick it up earlier? Should we have pushed to get the eye seen?’ We started to blame ourselves, thinking it was something we had done, that we could have prevented this.”

Venus started chemo treatment, which had many side effects.

“Venus would be going to the hospital on the Friday, have the side effects which would last into the following week, go back up to the hospital the next Friday and after she had that second dose, the side effects of the first dose would kick in. She would not be able to get out of bed, she’d sleep endlessly and sometimes you’d think she wasn’t going to wake up because she was so non-responsive.

“As Venus had become immunocompromised, it was safer to keep her indoors and away from mixing with others due to the high risk of infection. We contacted the school and all of her afterschool clubs and activities what was happening and that she wouldn’t be coming back to her clubs for a while.

“She started to get nightmares from the chemo. The nightmares were very unsettling and made her not want to go to sleep. Because Venus wasn’t sleeping it usually meant that we all didn’t sleep.

“Venus had really beautiful hair. She had a really thick afro and we let her know that the medicine that she was having, over a period of time would start to make her hair start to get very thin and then more than likely it may fall out. After six/seven weeks nothing had happened. Her hair was as strong as before she had the treatment so we thought maybe her hair will remain. Michelle used to brush Venus’ hair every morning and one morning she could see the hair was starting to thin and come out. Every day more hair would come out and Venus would wake up and there would be lots of hair on her pillow. This was a very difficult thing for her as she absolutely loved her hair.”

As well as experiencing different side effects, going through treatment also meant Venus had to be away from school and her friends for a long time.

“Venus missed a lot of time from school as she was immunocompromised and incredibly weak. She was unable to do anything. She would spend most of the time in bed and we would be reading to her. We would organise face-time calls with some of her friends but she found it incredibly difficult to look at the screen as it would hurt her eyes. Venus would be laying down with one of her friends talking over the phone and not getting much response, but it was reassuring to her.

“Then after a few months we said do you want to tell your class friends why you’re not in school, we had already told the teacher and Venus said she would like to tell them. We suggested maybe writing a letter that the teacher could read it out. Venus wrote the letter and is really beautiful. It’s actually quite difficult to read as it is all her own words and thoughts.”

Throughout Venus’ treatment she and her family were supported by Abby, a Young Lives vs Cancer Social Worker.

“Abby would touch base with us regularly and it was really good to be able to talk to her. She would meet us at The Marsden and we would be in constant contact via email and phone calls so it was good to have someone there at the end of the phone if you wanted to talk or drop something down in an email to her.

“At the time when we were introduced to Abby, she managed to give us direction and without that, we would have been confused as to where to turn and what was available to us. Abby helped us to arrange things that we didn’t know were available to us. Things that we then didn’t have to worry about organising which meant we could focus more on Venus and on ourselves, like the letter to our employees, it was another thing we didn’t have to worry about, putting pen to paper and thinking how we’re going to word this so we could put our full focus on Venus.”