Talking points
- Pineal tumours are extremely rare – about 1 per cent of all brain tumours are located on this gland
- Rachel Hayden needs to raise $100,000 to pay for brain surgery
- Go Fund Me page can be found here: Fighting for Rachel
One hundred thousand dollars.
That's what it will take for Perth mum Rachel Hayden to be the mother and wife she wants to be again.
That's what it will take to give her the chance to live pain-free without the constant double vision, severe headaches, paralysis, falls, blackouts, seizures, severe memory loss and other devastating symptoms that have made life so hard since being diagnosed with a pineal cystic tumour in the centre of her brain.
Rachel Hayden is a mother of five.
The diagnosis came after years of chronic cellulitis that sees parts of Rachel's body swell to an unbelievable degree, a condition she believes is related to the tumour.
The mother of five struggles to walk with a crutch, determined to keep as much mobility as possible. But she is often being covered in bruises from falls. Just having this conversation at her dining table clearly takes a huge effort.
"It's all crippling to me," she says.
Doctors had pondered for years what was causing all these seemingly unrelated medical problems in the vital and beautiful young woman who loved her work, her family and the landscaping business she ran with husband Andrew but had to close so he could care for her and the children. She loved the brand new house the couple built in Byford two years ago.
Rachel and Andrew Hayden are trying to raise money for surgery.
It's the same near-new place they’re now trying to sell in a market that is not going to yield a figure that would make selling worthwhile.
Rachel speaks with a quiet determination, describing running a gauntlet of doctors and specialists, being “bounced around” the Western Australian health service.
"There were just random things going on that nobody could explain," she says.
"Then there seemed to be a lot of little things that nobody could explain. Then two years ago I got really sick. Three weeks out of the month I'd have cellulitis."
Cellulitis, an infection of the skin and tissues beneath, is excruciating. Rachel can put on up to 20kg of fluid during one attack.
In August last year she was eventually told she had a brain tumor.
I need a voice, I need my story to be told. To help other families as well, to make sure this never happens to anyone again. Just to be left in the system, devoured by it. It's not ok.
"It was a Friday afternoon, she'd spent a few days in hospital, done some MRIs but she was mainly in there for the cellulitis," Andrew said.
The family celebrate Rachel’s 39th birthday last week.
"They came and said we will send you home. Just before walking out, he said 'you've got this thing in your brain. There's nothing to worry about, it's not going to grow'."
But it has. And the symptoms have been getting worse.
Rachel celebrated her 39th birthday last week with a dinner her friends organised that she really didn’t feel well enough to attend but struggled through.
Rachel and her husband have told her story over and over again, mostly to a conga line of doctors whom she sought help from. She was told the tumour was inoperable.
Finally she told her story to one neurosurgeon who said he would do something. The famous Dr Charlie Teo, based in Sydney, whose reputation as a “cowboy operator” the couple is well aware of.
Dr Teo is known for taking risks other surgeons are not prepared to take, and after the couple flew east for a consultation, he determined Rachel was a good candidate for brain surgery.
"He will go where nobody else will go," Rachel said.
The couple know the risks.
"He's done 80 of these, he's told us. They have come out with symptoms gone, or minimal residue," Andrew says.
The cost of the operation, then care in ICU and follow up is about $100,000.
"I could die, we have to sign a waiver to say that's ok, basically. I'm shit scared, to be honest," Rachel says.
"And I do go between 'do I do it, do I not?' because I'm scared. Then I think of the kids. Do they deserve to have a mother? I'm only 39 years old.
"It's just all unfair."
A letter from Dr Teo's office to Rachel's GP says she would be a reasonable candidate for surgery given her symptoms and radiographic findings – a 9mm lesion.
"While our patients who are offered surgery tend to do quite well, we would certainly never guarantee that her symptoms would abate after surgery and she would need to know that going in as well as the risks of new neurologic deficit or problems including even death," the letter says.
Dr Teo told the couple that people with Rachel's condition he had operated on had a better quality of life afterwards. But there were no guarantees.
"I've got to try," Rachel says.
"I want it out."
The tumour in Rachel’s brain.
MUMS MOBILISED
Neighbourhood mums noticed Rachel was getting more unwell, and started asking Rachel's children what was going on. They started a fundraising campaign Fighting for Rachel. But it's been tough.
"It's been hell, we have done some really nice fundraising events, but the amount coming out of them is minimal," Rachel says.
"To date, today we are sitting at $5000 altogether. That's it."
To donate, click here
While the Federal Government is looking into extravagant out-of-pocket medical costs, with the chief medical officer at the helm of an investigative committee, the couple find it difficult to reconcile the fact that $100,000 may restore her life, but the Australian government cannot help.
"It's just devastating," Rachel says.
"There are people like the peadophile in Bali recently. Australian taxpayers spent $500,000 through Legal Aid to save him. But they can't spend $100,000 to save a mum of five.
"My kids have got to watch their mum die."
Rachel Hayden was told the tumour was inoperable.
Life was marvellous
Rachel remembers back to the years before her illness struck.
The couple had built a new home, had savings in their account, were very happy.
"We were going marvellously, and then it all just suddenly changed," Rachel says.
"And then the system let us down."
She says she was put on unemployment rather than disability, and was forced to job seek while very ill, which cost her money and effort.
It's plain to see how much Andrew loves his wife, and the depth of his despair at witnessing her decline.
He tears up talking about the situation the family faces.
"I look at photos and just cry," Rachel said.
"You just can't believe how much someone can change, and think can I get back to looking like that, and feeling like that if I could just get this thing out of my brain that's making all my life hell."
The family's five children are suffering too.
One son was bullied at school about his mother's illness, so much so the couple decided to homeschool him.
"Go tell your mum to die," Rachel says he was told by one bully.
Dr Teo has been critcised for peddling hope when hope comes with big risks.
But Rachel says the decision about whether to undergo brain surgery should be hers.
"I need a voice, I need my story to be told. To help other families as well, to make sure this never happens to anyone again. Just to be left in the system, devoured by it. It's not ok."
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