An Aberdeen mum desperately searching for a way to save her daughter’s life is hoping to raise £35,000 to send her “inspirational little girl” to America for treatment.
Megan McIntosh has endured a gruelling two years of operations, recovery and a near-fatal heart attack, but still faces a huge struggle to reach adulthood.
The nine-year-old’s life was changed in the blink of an eye this time two years ago when doctors realised, after months of pleading from mum Michelle Reid, that she was living with a ganglioglioma posterior fossa tumour in her brain stem.
“Her eye had been swollen and just not looking right and doctors kept trying to pawn me off saying it was nothing,” Miss Reid said.
“They even tried telling me it was hayfever, by my mummy gut told me something was wrong.”
The community nurse persisted though, and in December 2018 tests eventually confirmed her worst fears.
“I walked into the surgery and basically refused to leave until they sent her for a scan,” she said.
“The tests didn’t find anything wrong until they tried a simple pencil test and Megan’s eyes were like a scene out of the film Flubber. That’s the only way I can describe it, her eyes were everywhere. That afternoon she went for a 90-minute MRI scan.”
‘It was then we realised how ill she was after the surgery.’
And 12 hours later came a call that changed Megan’s life forever.
“It was awful,” Miss Reid added.
“They had found a 125mm tumour at the back of her head. It was massive and we were told we were going to Edinburgh Sick Kids Hospital in the morning.
“There they did a scan of her eye and the tumour honestly looked like an overgrown orange. It was massive, right in the back of her head. I wondered how she hadn’t been ill.”
Megan was fitted with a shunt to drain any fluid off of her brain before an agonising six-day wait for an intensive care bed to become available before they could operate.
A 13-hour operation successfully removed 97% of the benign tumour, but the recovery from that operation brought about its own complications.
“We got the call to say she was out of surgery and in recovery,” Miss Reid added.
“I walked in and just saw my poor lifeless little girl covered in tubes and wires. It was awful. I didn’t know what to expect after her surgery.
“But she took her mask off and started telling me about how there was a cannula in her foot, then her heart stopped there and then.
“I saw the colour drain from her face. They resuscitated her but it was then we realised how ill she was after the surgery.”
She spent the next eight weeks, including Christmas and her birthday celebrations, in intensive care in Edinburgh, learning to walk, talk and speak again.
A form of bulbar palsy left her unable to eat and drink safely, meaning she needed a feeding tube fitted. She was left unable to sleep unaided as her brain struggled to remind her body to breathe.
Worse was yet to come, though, when she declared to her mum ‘I don’t know who you are”.
Miss Reid said: “Her stitches had burst. She was confused and insisted I wasn’t her mum.
“It was awful. She was leaking fluid from her brain down the back of her neck. They put her on a ventilator for two weeks to let new stitches heal properly.”
Scan showed tumour had grown again
After five months in hospital, Megan was home, and with just 3% of the low-grade benign tumour left the family could finally look forward to getting back to normality – with Miss Reid and her partner’s upcoming wedding in May.
Megan returned to Walker Road Primary School in Torry assured that what remained of her tumour was unlikely to grow drastically.
“She ran out of the kids’ hospital with her medal of honour from her physio,” Miss Reid said.
“She was fighting fit and getting better and better – until last month when her six-monthly scan showed the tumour had grown again by around 9-10mm.
“It’s now 27.5mm and my concern is that it’s started to grown again and we don’t know why.
“Now there’s also a suspicious growth at the top of her spinal column near the old tumour too. I’ve been told they can’t do a biopsy on that as it’s too unsafe and she can’t get chemotherapy, radiotherapy or surgery to sort either.
“I was told she is a terminally ill child and she is not going to live a long life. I was told in a nutshell, over the phone, there was nothing they could do.”
‘Everybody who meets Megan says how inspirational she is, how happy she is’
Not giving up though, Megan’s family, including dad Craig McIntosh, step-siblings Madison Davidson, 12, and Charlie Davidson, five, and step-mum Emily Davidson, are determined to raise the £35,000 needed to take her to America for proton beam therapy, a treatment of targeted radiation which could rid her of both growths.
“Megan has told me she is tired and she doesn’t want to do it anymore, that she’s had enough. She’s fed up of not being normal,” Miss Reid added.
“She is willing to try this but said if that doesn’t work she doesn’t want to do anything else. I’ve always been very open and honest with her and have never sugar-coated anything.”
A fundraising page set up to try and raise the money needed has already raised more than £6,000 in a matter of days. Meanwhile, Megan has insisted on returning to school, despite needing peg fed and now being blind in her right eye.
“Everybody who meets Megan says how inspirational she is, how happy she is,” Miss Reid added.
“She has a very close-knit group of friends at school and they stand right behind her through all of this. They keep her happy and bubbly.
“There are so many kind people in the world willing to help. It’s rocketed. People are being so kind and trying everything to get her over there for the treatment.”
