Here, Jen Beal, 36, tells the story in her own words.
Staring blankly at the piece of paper, I looked up at the doctor confused.
‘It’s negative,’ she said, pointing at the page. ‘She’s 100 per cent in remission!’
Looking over at my girl I was flooded with emotion.
Over the past three years my daughter Avery, had been battling acute lymphoblastic leukaemia, a type of blood cancer.
She was just 10 months old when we got the call. A bad batch of the flu had struck our family of eight, but Avery didn’t bounce back like her siblings, Ella, 16, twins Dan and Tom, 13, James 10, and Sienna, eight.
‘She’s a little pale,’ I told my hubby Dave.
The GP did a blood test and said it was probably bronchitis, but when my phone buzzed the day after, my heart dropped.
‘Can you come to the hospital immediately,’ the nurse said.
The moment we entered, my girl was whisked away for more testing.
Barely holding it together, I signed page after page for my little bub to undergo treatment.
Just three days after we’d visited the GP for the flu, she was having chemotherapy two hours away from home.
When Dave brought the kids to visit us on weekends, we soaked up all the cuddles we could. But I dreaded the calls where he would tell me one of them was sick.
A small sneeze or throat tickle meant they had to stay away due to Avery’s weakened immune system.
‘Next weekend,’ he promised, his voice full of heartbreak.
When Avery relapsed, the doctor had more news.
‘It will be a miracle if she makes her fifth birthday,’ he warned us.
Hitting her milestones, Avery took her first steps in the ward.
Birthdays and holidays were spent there too. It took its toll on my girl.
Waking up with clumps of hair on her pillow, Avery touched the bald spots and tears ran down her cheeks.
‘I want it gone,’ she wailed. So, I used a razor to shave off all her locks.
Staring in the mirror she turned to me in tears. ‘I want my hair back!’ she wept.
Holding my girl, I just wanted to take away her pain.
But now, after three years, two bone marrow transplants, three relapses, multiple rounds of chemo and radiation, Avery was officially in remission.
In July 2017, we were all under the one roof again, as a family.
‘You have no idea how good it is to be home,’ I said, embracing Dave.
Over the next few months, Avery’s hair sprouted up and she beamed an ear to ear grin. Sipping my cuppa one day, I watched the kids rumble together in the backyard. This is perfect, I thought.
Then in the middle of the night this April, we were woken by Avery running into our room, howling.
‘My face feels like it’s on fire,’ she screeched.
Flicking on the lamp, my jaw hit the floor.
Layers of skin were flaking from her face exposing red raw patches.
Jumping up from bed, I raced her to hospital.
‘Everything will be alright,’ I cooed, hiding my panic. But deep down, I was terrified.
Avery was immediately given pain medication and doctors placed her on cool packs while they ran tests.
Handing her a packet of corn chips as a distraction, she happily munched away.
Afterwards, I used some wet wipes to clean her orange hands. But when I scrunched the wipe I felt something inside – her skin! I’ve rubbed it off her hands! I fretted, staring at her blistering palms.
Calling the nurse, Avery was taken straight to theatre. Surgeons were going to wash away the bad skin to expose what was beneath.
Pacing the corridors, I tried to keep positive. Then finally the surgeon came to see me.
We’ve removed 96 per cent of her skin,’ he said.
Dave met me, and bracing ourselves, we walked in to see Avery.
Mummified and breathing through a ventilator, her blistered face poked out from between the bandages. Sobbing, I rushed to her side. ‘Avery has scalded skin syndrome,’ the doctor said.
A rare infection, SSS is caused by bacteria, which produces a toxin that damages the outer layer of skin, causing it to shed.
Nasty blisters that can easily burst leave the skin looking burned or scalded. ‘She’s a fighter,’ Dave assured me.
Under sedation to manage her pain, every day the nurses changed her dressings in theatre. It was heartbreaking seeing red skin oozing through the bandages. But when Avery was slowly brought round after five days, she was stronger than ever.
Extraordinarily, her skin had healed, leaving only a few scars on her arms and legs.
Taking everyone by surprise, we walked out of hospital two weeks later. Doctors still don’t know what caused Avery’s SSS but all we know is we have our girl back.
Now five, she loves riding her scooter and never leaves her soft toys behind. It’s hard to comprehend everything she’s been through. Making a full recovery, Avery showed everyone what a superhero she is. She is our miracle.
Read more in this week's issue of that's life, on sale now.
