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Rachel convinced her hospital
that they needed a brain lab of their own |
It was good that my tumour came when
I was young
 Though benign, as the cysts expand they can press against her optic nerve with the risk that she could go blind.
They also impinge on her pituitary gland, responsible for the release
of hormones, which is causing difficulties for her going through puberty naturally. Hence the mixture of growth hormones, hydrocortisone, thyroid hormone and oestrogen she has to take.
Yet despite the dreary regime of medication, Rachel remains cheerful and optimistic. She’s used to the hassle. Drugs, hospitals and operations have been a constant part of her life.
Panic
Rachel’s mum Catriona still recalls the panic she felt the day
her four-year-old daughter began being violently sick.
“Our GP sent her straight to hospital in Kirkcaldy.
“At first they thought she’d had some kind of fit and it was only when we went to the Western General in Edinburgh for a CAT scan that they discovered the tumour.
“There had been no other symptoms until then, though, in hindsight, we realised she’d always been small for her age.”
Because of its position, operating to remove the tumour has never been an option. But twice-yearly MRI scans and regular clinics at the Sick Kids Hospital in Edinburgh help keep an eye on it.
In January 2006, when it was found the cysts were swelling again, Rachel was taken to hospital to have them drained.
Six months later she underwent an hour-long operation at the Western General, the only hospital in Edinburgh with a brain lab.
Light
It’s a piece of equipment that uses beams of light and the latest scanning equipment to pinpoint lesions in the brain and guide neurosurgeons to within a millimetre of any tumour.
In Rachel’s case, they used it to implant a drain into her cranium, which means that when the cysts fill in the future, doctors will be able to insert a needle to draw off the secretions without a trip to the operating theatre.
Trouble is, though the op was a huge success and the level of care couldn’t be faulted, Rachel just didn’t like being at the Western.
“I’ve been going to the Sick Kids for 10 years,” she says. “I know my way round the place like the back
of my hand and I recognise the staff and other patients and they recognise me.
“It’s nice to have someone to say ‘Hi, Rachel’ when you go in and sit and chat.
Scary
“The Western General was scary because it’s an adult hospital and I was the youngest there. When I
first went in I was in a ward with six grown-ups, though I was put
in a private room later.”
Rachel was so determined other children shouldn’t have to go through the same experience that she wrote to the Sick Kids Friends Foundation explaining why they need a brain lab.
It’s not difficult to justify.
Twenty children a year from all over Scotland undergo brain operations at the Western General.
These could all be switched to the Sick Kids if they had their own facility.
And that’s just for starters, as doctors are still discovering more and more procedures the machine can be used for. But because one is available to be used in the Western, the NHS won’t fund another for the Sick Kids.
Rachel convinced the Sick Kids Friends Foundation to raise money to buy the new brain lab, but while they are well on the way to the £170,000 required, they’re still £30,000 short.
Donations
That’s where Sunday Post readers come in. We need your generous donations for that final push to get the equipment. Though, with any luck, it seems Rachel won’t need
the brain lab again.
Her recent MRI revealed the danger has subsided.
“I think in a way it was better the brain tumour came when I was so young. If it all happened now, I’d be much more worried because I’d be thinking about it too much,” she reveals.
“I’ve just learned to accept it and it’s something I’ve grown up with. Friends at school ask how I can have an injection every night, but it just comes with the package. I wouldn’t get very far if I had a phobia for needles!
“I don’t feel any pain or discomfort from day to day. I’m studying for my Standard Grades
at the moment and I want to be a journalist in the future.”
Versatile
Sick Kids Consultant Paediatric Neurosurgeon Lynn Myles explains just how versatile the brain lab is
in allowing surgeons to pinpoint problem areas.
“There’s a computer screen which shows information gained from
MRI scanning done previously.
“When you’re in theatre, you use an infrared device, like a TV remote with a little red dot, which you shine over the patient’s face. A detector picks it up as it bounces back and matches the position of the
patient’s head to the scan.
“With various pieces of pointing equipment, if you point
to something inside the patient’s head a marker comes up on the screen showing where you are compared to the tumour.
“The brain lab can be used for things such as facial tumours and surgeons employ it to place screws or do biopsies of tumours on the spine.
“Orthopaedic surgeons can also use it to place metalwork into
bone in the legs.”
Jess’s visit was X-tra special
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You can e-mail us at:
hospitals@sundaypost.com |
Rachel has lived with her problem for 11 years.
