Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Baby Myah was ten-and-a-half months old when she fell ill. Initially diagnosed with a virus, she was rushed to hospital where an MRI scan revealed a brain tumour. She underwent treatment and surgery and, happily, is now doing well.
“Myah was in theatre for 19 hours and very shortly after she was having another general anaesthetic so she could undergo an MRI scan. Every time she had a procedure we were warned of the risks; Myah could lose her sight, she might be permanently damaged, she could die. Each time I prepared myself for the worst. For three months, I barely slept and I wondered if the nightmare would ever end.”
Myah’s mum Fiona tells her story:
My partner Joe Bell proposed to me on Valentine’s Day 2015. It was such an exciting time, our baby Myah was nearly a year old and her older sister Freya was three.
Sadly, any thoughts about a wedding were swiftly put aside as the following day we were in hospital. Myah had been sick several times during the previous couple of weeks. Our GP suggested she had a virus but by mid-February we were becoming increasingly concerned. We went to Cirencester Hospital where we were given medication to treat dehydration and when we went back the following day we were told to take her straight to Gloucestershire Royal Hospital.
Myah was still vomiting and couldn’t even keep water down. She had lots of tests and a CT scan which, to our horror, revealed she had a brain tumour.
Myah had gone from having “a virus” to being on the very edge of life and it was as though we had been caught up in a whirlwind.
We were transferred once again, this time to Bristol Children’s Hospital. It seemed unbelievable that Myah could be critically ill yet we had noticed so few symptoms. Looking back at photographs we could see a slight swelling on her head but nothing obvious enough to cause us concern or noticeable enough to be picked up by health visitor checks.
Myah was just ten-and-a-half months old and the tumour had grown to the size of a tangerine – massive when compared to the overall size of her brain. We were struggling to take it all in as she was rushed into surgery to have a drain fitted to take away the fluid.
Myah was put on chemotherapy which was aimed at reducing blood flow to the numerous tiny vessels which were supplying the tumour. They were very difficult times as we didn’t know what was going to happen and we also had our other daughter Freya to care for. We stayed in accommodation near the hospital and, every Thursday, Joe would go home and bring Freya from his mum’s to be with us for the weekend.
I felt like we were in limbo. We had no idea what lay ahead, whether Myah would make it to the next stage. Despite how poorly she was Myah, who was still breastfeeding, would break into a lovely smile when Freya came to visit. It is impossible to explain how terrifying it is to see your child have a seizure and, to some extent, I have blocked out the detail of what that was like.
It was April before Myah was able to have surgery. She was in theatre for 19 hours and very shortly after she was having another general anaesthetic so she could undergo an MRI scan. Every time she had a procedure we were warned of the risks; Myah could lose her sight, she might be permanently damaged, she could die. Each time I prepared myself for the worst. For three months, we barely slept and wondered if the nightmare would ever end.
Fortunately the surgery went well and the MRI revealed the tumour, which was a grade two choroid plexus papillomas, had been successfully removed. Myah underwent another four rounds of chemotherapy to ensure any remaining cancer cells were killed and she continues to have scans of her spine and head.
Myah now lives with a permanent shunt in her head which is essential to drain any excess fluid which continues to build up. She was back in surgery in February 2016 when the tube became blocked. We know there is a risk it may happen again but now know to look for the warning signs such as problems with speech and walking, sickness and dilated pupils.
Over the course of her diagnosis and treatment we nearly lost Myah on four occasions. Aside from the shunt and problems with her peripheral vision which should decrease with time, Myah is a normal toddler. I think we will always live with the worry about what might happen if the tumour grows back but while Myah is a very special little girl because of all she has gone through, I don’t want her to think there are things which she can’t do as she grows up. Perhaps it would be easy to wrap her in cotton wool but we are determined to ensure her life, and ours, is as normal as possible.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Mayah’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will 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.