In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Toddler Ryleigh Godfrey was just two when she was diagnosed with an aggressive brain tumour. She has endured countless operations, radiotherapy and chemotherapy but faces a future which is far from certain. Here, her mum Kay talks candidly about the heartbreak of hearing your baby has brain cancer.
Here is Ryleigh’s story told by her mum Kay
There are no words to describe how it feels to be your told little girl has a brain tumour. Ryleigh had been poorly for a few weeks before we were finally told the devastating news. We first realised something was wrong when we noticed her head was tilting to one side. It was constant and, at first, everyone suspected it was because she had slept at an odd angle. But then she started being sick as well. It was odd as it was just once and always at the same time during the night. And then we noticed her walking had changed, as if there was something wrong with her balance.
We were finally referred for an MRI scan in June 2018 and that was when our world was shattered. Ryleigh, who was just two, was rushed from Taunton to Bristol by ambulance to undergo an operation which latest 20 hours. We had been told to expect the surgery to last for eight to 12 hours so it seemed like a lifetime and her dad Lee and I were so scared.
“Ryleigh is such a sweet little thing and this seems so unfair. Even our consultant said we had the worst luck ever. Not only is the tumour aggressive, it’s also in a hard-to-reach place and there have been so many setbacks.”
Her tumour is a grade 3 ependymoma and we were told it was likely it had been growing in her brain stem for some time. While the first operation was successful in removing most of the tumour there were complications including hydrocephalus as fluid built up on her brain. As if that first operation wasn’t enough, Ryleigh was back in theatre on numerous occasions to have a shunt fitted and various adjustments. It was a living nightmare and I have lost count of how many times we said goodbye as she was taken back into surgery.
As if the surgery wasn’t enough, we had to put her through seven weeks of radiotherapy as well – this seemed to be effective and further scans showed the tumour had shrunk. Once a permanent shunt was finally sorted out Ryleigh was able to start her chemo which was tough but we got through it and finished on 25 May 2019 – so much had happened in just one year. We celebrated her third birthday at our home in Bridgwater with friends and family, including Ryleigh’s brother Dominic who is four and simply adores her. He’s too young to really understand what is going on but he knows that his sister has a “lump in her head” and, if anything, the bond between them is stronger now.
We’re facing a very uncertain future as we anxiously await the results of her latest scan. If she does need further treatment, the doses she has already had mean she can’t have more radiotherapy until October and that seems such a long, long way away with something as aggressive as this.
“It’s incredibly hard to see Ryleigh so unwell. Her latest operation has really affected her and she now struggles to walk and can just about manage a few steps holding onto her dolly’s little pushchair.”
I am so grateful that we are part of a loving community and I know this support is going to be really valuable whatever the future holds. We have also found comfort in fundraising for Brain Tumour Research by taking part with friends, family and neighbours in the charity’s Big Little Walk of Hope. It is disgusting to think that brain tumours kill more children and adults under the age of 40 yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
We know we are not alone and, together, we must do all we can to find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.