Elizabeth is an old friend who contacted me with a wish to raise awareness amongst parents of the symptoms of brain tumour, following a recent devastating diagnosis.  Fortunately her daughter, Quinn, is now doing well, but it took a mother’s instinct and persistence before a correct diagnosis was made and medical treatment given.  This is her story…

Life is so full of amazing, precious moments and there are few moments as precious as the birth of your children. Being a parent brings so much joy into our lives, from their first smiles, steps and words, to celebrating their achievements great and small as they learn and grow. It’s a wonderful journey and a true blessing.

There’s another side to being a parent, times of doubt and worry, of holding their hands as they are sick and wishing that you could make it stop, of seeing them upset and unable to articulate what it is that is upsetting them and feeling helpless to wipe away their hurt.

Elizabeth is a parent that understands these extremes of joy and pain more than most.

Her daughter, Quinn, is a beautiful two year old with a smile that could warm the coldest of hearts and the most infectious cheeky laugh.

“She’s a real monkey,” says Elizabeth, “she may be only two but she thinks she’s in charge and already knows her own mind, she’s really stubborn and very, very cheeky!”

Her stubbornness was revealed very early as she kept her parents waiting for her arrival.

“When she finally arrived we couldn’t believe she was here. She was 16 days late and even after being induced twice she wasn’t budging. She was finally evicted via emergency c-section, she must have been far too comfy! We were – and still are – in absolute awe of her and couldn’t believe how much we could love her.”Like with all babies and toddlers there were ailments that Elizabeth and husband Anthony would visit the doctor about: night sickness, poor sleep, headaches. Most parents will recognise the early anxieties of being new to parenthood and will have been reassured by their doctor; sometimes they may have felt a little silly for taking up the doctor’s time for something that was nothing to be concerned about at all.

But Quinn’s symptoms persisted, and there were more. At 9 months she displayed unusual jerking movements. “We filmed this and showed the doctor, he had no clue and referred her for an EEG scan. I had done loads of googling but found no answers. We were very relieved when the scan came back clear but looking back we should have pushed for further investigations.”

“I always had a sense that there was something not quite right.”

Last September Quinn was again at the doctor’s, this time with swollen gums.

“The GP sent us to the dentist and we felt fobbed off as they said it was ‘probably just teething’. The dentist was adamant that it was in fact medical, and told us to take her back to the doctor. We didn’t even get past the receptionist so we took her straight to Accident & Emergency. They weren’t really going to do anything until the dentist spoke to them; she was concerned about leukaemia and my own research had raised the same worries.”

Quinn was finally given blood tests and these came back clear; she was discharged with the swelling put down to teething which her dentist did not agree with.

“Again, we should have pushed for further investigations.”

In early 2017 Elizabeth and Anthony took Quinn to the doctor’s a few times because the night headaches and sickness were gradually getting worse. What two year old actually complains of a headache and can articulate it? Luckily Quinn could, and this time she was referred to the hospital for blood tests and, finally, an MRI scan.

When the results came they revealed a parent’s worst nightmare – Quinn had a brain tumour.

“We were completely shocked and just couldn’t believe it. We still can’t.”

“I had so many questions flying through my mind, but then the symptoms all started to make sense.”

How does a parent cope with hearing such a diagnosis?

“Some parents want to know everything, others want to know very little and ultimately you need to do what’s right for you. I did as much research as I could and asked lots of questions.

“The neurosurgeon was absolutely amazing, he was really amiable and had so much time for us, thoroughly explaining everything and answering even my most bizarre questions. It was also reassuring to find and speak with people that had been through the same and were fit and healthy, it gives you hope.”

An operation was scheduled to take a biopsy and drain a number of cysts that surrounded the tumour and were causing the headaches and sickness due to a build-up of pressure in the brain (hydrocephalus).

“Quinn knew that she was poorly and needed to see the doctor. We would play with her doctor’s kit as a kind of play therapy so that it wouldn’t all seem so scary for her.”

“The operation took 8 hours and all we could do was wait. We went for a walk, bought her some presents, went for food – that we couldn’t eat – and sat on her bed and waited.”

The moment that she came out of theatre is one Elizabeth will never forget.

“She was awake and alert and devoured two ice pops like a little vampire, she was amazing! She kept saying, ‘I want my Mummy!’”

Soon afterwards her eyes began flickering, a reaction to the pressure change in her brain following the draining of the cysts.

“At the time we weren’t really told anything and thoughts of stroke or a reaction to one of the many drugs she had been given crossed our minds. There was talk of giving antidotes but after 4-5 hours it gradually settled down. I must have walked about three marathons walking up and down the hospital ward with her afterwards as she recovered.”

There are many different types of brain tumour and following analysis of the biopsy Quinn’s full diagnosis was a low grade pilocystic astrocytoma on her hypothalmus, about 2cm by 1cm in size.

“Quinn’s tumour is benign and her condition is stable. We were reassured to find that she has ‘the best of the worst.'”

The care that Quinn received in hospital was fantastic and staff couldn’t do enough for her. One nurse, Laura, even laid with her to reassure her during an MRI scan. “The nurses were amazing, I don’t know how they do it. Quinn has always stuck very close to me but she took a real shine to Laura!”

Quinn is doing well as she continues to recover from her operation. She recently had her first post-op MRI scan and her parents were hugely relieved to find that the tumour is stable and the cysts haven’t returned.

“Who knew ‘stable’ would become one of my favourite words? Quinn is now on what is called ‘Watch and Wait’ – not receiving any treatment but watching and waiting to see what the tumour does. She will continue to have scans every 6 months to check her progress, provided there is no change in her symptoms.”

According to Elizabeth, U2 describe this feeling perfectly in the song, With Or Without You:

‘Sleight of hand and twist of fate, On a bed of nails I sit and wait’

But for now Mum and Dad are extremely relieved that she doesn’t require treatment and can continue to be the happy, cheeky, very funny little girl that she is. Their focus is on getting life back to normal.

“She wouldn’t sleep for a month or so afterwards but it’s important to get back to normal as soon as you can. It was horrible taking her back to nursery and leaving her – even though it was just for an hour initially – but she loves it now.”

Following their traumatic experience Elizabeth is determined to raise awareness of the symptoms of brain tumour amongst parents and to urge them to consult their doctor if they have concerns. And to push their doctor for tests if concerns remain.

“We visited doctors a number of times and the possibility of a brain tumour was never considered, yet upon diagnosis I found that her symptoms were all linked.”Brain tumours kill more children and adults under 40 than any other cancer and yet only 1% of the UK’s national spend on cancer research has been allocated to this disease.

Symptoms to be aware of include:

* Persistent / recurring vomiting
* Balance / coordination / walking problems
* Abnormal eye movements or suspected loss of vision
* Behaviour change, particularly lethargy
* Fits or seizures (not with fever)
* Abnormal head position such as wry neck, head tilt or stiff neck
* Increasing head circumference.

Looking back, Elizabeth says,

“I had always felt that something wasn’t quite right despite what the doctors said. A doctor has since told me that a mother’s instinct is usually right.

“I urge parents – don’t be put off if your concerns remain, trust your instincts. I’m so pleased that I did.”

For more information on brain tumour please visit: https://www.headsmart.org.uk/