Ruby Kendle, 14

Pilocytic astrocytoma

"I have a long term diagnosis now, but I try not to let that affect me day to day."

Being diagnosed at a young age

Hello, my name is Ruby, when I was 6 yrs old I was diagnosed

with neurofibromatosis type 1, this is a genetic condition

that affects people in many ways. When I was 7 years old,

I started to get symptoms which included vomiting, double

vision and dizziness. We saw my GP who knew something

wasn’t right so referred to me to a paediatrician, who

ordered me a MRI scan for the next day. After the MRI

we saw an oncologist who broke the news I had a

brain tumour In the cerebellum, I was then rushed to

John Radcliffe to have brain surgery that was 7 hours,

I also had hydrocephalus so I was put on steroids for this;

I was in hospital for 2 and half weeks and had a month off of

school as well. Then, I had MRI scans to monitor once a year.


In November 2015, they found a second tumour. I had relapsed

this time and the tumour was inoperable, so after a biopsy

on the 20th of December they decided to monitor its growth.

In April 2016, it had doubled in size so I started a 18 month

long chemotherapy course, which include vincristine, carboplatin

and vinblastine. I faced 4 months of intensive chemo, which resulted

in constant nausea and I developed neuropathy. During chemotherapy

I was extremely neutropenic which resulted in me getting blood

poisoning: luckily it was caught in time and I was transferred by

ambulance to the hospital to receive IV antibiotics. Due to the vincristine,

I lost a lot of mobility and used a wheelchair all of the time when I was out.

I also got extravasation (where the chemo leaks out of the central line

causing burns) on my first chemo.


Cancer friends

During chemotherapy, I was lucky enough to access the Teenage Cancer Trust,

which were a great help to me and I made some great friends. And the

Ellen MacArthur Cancer trust trips were life changing! I now have a

group chat with some of my close friends from my last trip to Cornwall

called ‘bottle’- interesting name but has a hilarious meaning to us!


Since finishing chemo I have been diagnosed with chronic pain, chronic fatigue

and HSD, all of which can be extremely difficult to manage! But there are many

great thing about being off of chemotherapy: I get to see my

friends a lot more and go to school which I missed! I have a long term diagnosis now

but I try to not let that affect me day to day.