Sitting down to watch TV, I could finally relax.
"How was your day, love?" my partner, Matt asked, snuggling up beside me.
"Long!" I sighed.
I ran my own security business, but that wasn’t my only job.
My daughter Kayla, 18, had Asperger’s syndrome, and was developmentally delayed. She needed round-the-clock care.
Fortunately, she was able to attend the nearby special school in Hervey Bay five days a week, but looking after her was still exhausting.
A few nights later, we were all relaxing in front of the TV when Kayla starting fussing.
She was holding her head in her hands and rocking back and forth. I could tell she was in pain.
I tried to soothe her but she grew more and more agitated.
Suddenly, she leapt up and started throwing cushions and books across the room.
"Kayla, stop it," I warned as she darted across the lounge room at the speed of light.
Matt tried to grab her so she wouldn’t hurt herself, but she wrenched herself from his grasp and ran smack bang into the wall.
We called an ambulance and explained the situation.
They said they were on their way but would need back-up from police.
When they arrived, Kayla had become so violent, it took six police officers to restrain her so she could be taken to hospital.
I was beside myself. She'd had a few violent episodes in the past few months, but none as bad as this. This wasn't just Asperger’s. Something else was wrong.
"Please give her a brain scan?" I begged the doctor, but he assured me there was no need.
"She's just having an autism meltdown," he said, giving me sedatives to calm her.
Over the next eight months, she had more violent outbursts and even a few seizures.
Every time we took her to the hospital, I pleaded for a brain scan, but I was always refused.
Then one night, I was in bed with Matt when he heard a strange noise.
"Kayla's gasping for air," he shouted, leaping out of bed. We ran into her room to find her not breathing. She’d had another seizure.
"Kayla!" I screamed, trying to shake her awake. She was blue and lifeless.
I knew CPR, so started compressions while Matt called an ambulance.
For 10 desperate minutes, I tried to revive her, but she remained lifeless.
Weeping with terror, I willed her to take a breath.
Suddenly she gasped for air.
"Thank goodness," I cried, rolling her onto her side.
Moments later, paramedics arrived and rushed her to hospital.
The moment I walked through the doors, I lost it.
"You have to give hera brain scan!" I demanded, my body shaking uncontrollably. "She almost died!"
Finally, I was taken seriously.
Later, a doctor came to speak to me.
"I have to show you something," she said gently.
I braced myself as I was taken into a private room where the doctor showed me the scan of Kayla's brain.
It contained a mass the size of a lemon.
"It's a brain tumour," she said.
For the briefest moment, all I felt was relief - finally I knew what was wrong.
But then devastation and panic set in.
I phoned Matt, who was furious.
"We've been asking for that scan for eight months!" he cried in frustration.
A neurologist carried out blood tests and more scans.
I was horrified to learn that the tumour had started growing when Kayla was an embryo. It should have been picked up during an ultrasound scan.
There was more bad news. Kayla had a condition called Hashimoto’s disease, which meant her immune system was attacking her thyroid.
The diagnosis meant immediate surgery would not be possible as she was at risk of having a heart attack or stroke.
So, for the past seven months we've been in and out of the hospital while doctors try to normalise her thyroid levels.
The tumour is now the size of a mango and pressing on her brain. It’s too dangerous to do a biopsy so we have no idea if it's cancer.
Kayla, now 19, has to wear nappies and can’t feed herself.
Both Matt and I have had to give up work to care for her as her school doesn’t have the facilities to manage her violent behaviour.
We could no longer afford the constant travel between our home and the hospital in Brisbane, not to mention the cost of accommodation, so we packed up and moved down there.
When Kayla can finally have her surgery, we will then have to pay for her ongoing care, which, on a carer’s pension that only pays $250 a fortnight, is easier said than done.
But I won’t give up until my baby's better.
Sadly, since Take 5 went to press, Kayla's mum has given us a tragic update. She underwent surgery to remove the tumour but the results showed that she has an aggressive, incurable form of cancer, Glioblastoma. Her family will be meeting with doctors to discuss treatment to help make her comfortable, but Kayla has been diagnosed as terminally ill.
To donate to the family, visit their GoFundMe page.
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Australian Women's WeeklyYesterday 11:49am