Sweet Emily has a half-moon smile, a kind heart and loves unicorns and Disney princesses. She’s four, so the latter is a given.
But little Emily also has a rare and aggressive form of malignant brain cancer.
She is sick, very sick and she needs our help.
Let me tell you why and how you can because after hearing about her and her beautiful family, I know you will want to.
Life as we know it
While other kids her age are zooming around on scooters, or trotting off to preschool, Emily is in hospital.
Before this beast of a disease hit (as unsuspecting as a freight train in the night), the Hunts were just a typical family and living in the picturesque NSW Southern Highlands.
Emily had just turned four, her parents, Deb and Jono, both teachers, were gearing up for the school year, and she was sharing the couch with her older siblings at home as they watched Master Chef.
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But when Deb and Jono noticed Emily’s face had dropped a little on one side, everything changed.
“We thought it was Bell’s Palsy”
What was suspected to be a case of Bell’s Palsy by their GP at the time, quickly escalated to brain cancer when an MRI showed a tumour.
“I literally never even got a full day [of work] in,” says Deb, who, along with Jono, packed their bags and headed to The Westmead Children’s Hospital with Emily.
Amazing family and friends quickly stepped in to look after their other two kiddos, Abi, (11), and Eddie, (9) while surgery loomed.
The tumour, identified as a rare and aggressive cancer called ATRT was removed in part in February. It was deemed too risky to surrounding nerves to be removed in its entirety, though, having already stolen half of Emily’s smile.
Aggressive cancer needs aggressive treatment
Since that big operation, Emily has been on an intensive treatment road.
So far she’s had five rounds of chemo (the toxic chemicals injected straight into her spinal fluid under general anaesthetic) and is currently awaiting her sixth as I type.
“She head butts the bubbles that they blow when they are putting her under,” Deb tells me, saying it’s these moments of Emily showing her personality that makes her smile while on this awful journey.
“She’s still our Em,” she says.
She is indeed. Despite her ordeal, Emily’s kindness shines. When the Easter Bunny came to visit the kids in hospital, Emily’s only concern was that her curtain had been pulled so her little neighbour in the bed next to her wasn’t able to see him.
She is also known to draw welcome pictures for new patients at the hospital to brighten their room.
While the chemo is working (so far the remaining tumour has shrunk by 50 percent), Emily has endured far more than any person, let alone a small child, should.
“She has had some nasty infections in between chemo treatments,” Deb tells me.
“A chest infection, which thankfully didn’t turn into pneumonia and a bad infection within her lumbar puncture site. It took weeks to heal, most of which she spent in hospital.”
Along with this, there’s been scary fevers, nausea, a nasal gastric tube replacement, test after test and just daily prodding and probing by doctors and nurses, who are all just trying to do their best for her.
But that doesn’t make any sense to a little girl who is scared of yet another needle and just misses being home and playing with the neighbour’s dog.
The girl’s got spunk
But the thing about Emily is, she has a fighting spirit.
She has spunk.
“Sometimes she can really fight against doing something – take meds for example,” Deb shares.
“I get scared because I don’t want her to be sick, but then the nurses remind me that it is this exact spunk that she needs to fight through this thing.”
Deb laughs while telling me that the threat of staying at the hospital unless she cooperates doesn’t work on her Emily.
“She simply says, ‘Oh that’s okay. I like the hospital. It has the Starlight room, the clown doctors, my teacher Sammy, Miriam (music therapist), Sharon (play therapist) …”
“It makes you realise what a wonderful job the hospital does at making a crummy situation bearable,” Deb muses.
She also recalls a traumatic experience where a thrashing Emily, losing her hair, was fighting against an injection and leaving her clumps of blond locks all over the bed.
“In the end, me and three nurses had to hold her down screaming just to get the medicine in.”
“Poor Abi was present when it happened and everyone ended up in tears. This really hit Emily just how much we hated her being sick and how this affected us too.”
Trust is everything
Jono had a good chat with his little girl after this happened and they came up with a plan.
“Emily only wanted one nurse and mummy present. The next time she needed to have the needle we could then say – ‘we’ll stick with your plan – just mummy and one nurse, but you have to do your end of the deal and sit still.'”
“It actually worked (well, for this one time it did),” says Deb who tells me that maintaining Emily’s trust is key.
And a bravery box helps
Whenever Emily needs to be brave (and let’s all remember she’s four. Bravery to a four-year-old is riding a wobbly bike without training wheels for the first time, not this), she’s allowed to dip into a box of presents that friends have donated.
Sometimes, though, there are too many bravery presents to count, and yet still Emily fights on.
It’s supremely unfair that she needs to, but then life isn’t fair and Deb doesn’t ask why.
She just asks for love (and if you are the type), your prayers.
A lot of them.
Last night was yuck. Nothing “uncommon” for a cancer patient but tough to watch and even tougher for her to go through….
“In God’s hands”
For Deb and her family, it’s their faith and a strong army of community support that is helping them climb this mountain with Emily.
“If there was anything I could do to take this cup from her, I would do it in a heartbeat, as too would Jono,” says Deb, telling me this is the most “harrowing thing” to watch.
“Everything is literally out of my hands. I realise my frailty and my desperate need for God,” she says, asking us all to please pray for her little girl.
So we experienced another aspect of this journey this week when we had to have Emily’s nasal gastric tube replaced as it…
An army backing her
Thankfully, the Hunts are being supported in every possible way.
Friends have cooked dinners, driven Abi and Eddie to visit their sister two hours away, minded the older kids when their parents can’t be there (because they tag team their time at home and the hospital so Emily is never alone. Jono works casually these days), and volunteered all of their gifts and time, in so many different ways.
Just head over to Emily’s Army Facebook page and you’ll see.
Last month, for instance, in a massive group hug to the family and in an effort to raise money for charities like Ronald McDonald House where some, and at times, all of the Hunts stay while on this journey, a steam train dubbed ‘Emily’s express‘ left a frosty highland town and headed for Goulburn.
It was choc-a-block full of supporters who had bought tickets and was lovingly organised by Deb and Jono’s friends. It was a day of family fun with face painters, balloons, a disco in one of the carriages, and a bagpiper leading the crowd to the park at Goulburn for a picnic lunch.
Being a friend of the family, I was on board, and at one point I spied little Emily dancing with some buddies. She was dressed in a rainbow tutu, had her face painted and her joy at being out of hospital was palpable. This was in stark contrast to the little girl who hasn’t had a lot of energy of late, sleeping much of the day.
It gave me hope that this story could have a happy ending.
Love in action
“There is goodness in our beings which shines out even brighter when the world becomes darker,” Deb wisely tells me.
She says she and Jono have been humbled by the acts of love by friends, people she’s lost contact with, and even strangers, including a 23-year-old guy who randomly wrote on Emily’s Facebook page that he’d had the same type of childhood cancer as her, and is now giving back by becoming a counsellor at a kids’ cancer camp.
If you’d like to show Emily and her family a little more, you can make a donation at Emily’s GoFundMe. Her journey isn’t over and this is one way to help when we feel so powerless.
So yes, Emily may have a half-moon smile, but there is a full moon one beaming inside from all the love that’s being showered on her. Because even though she is weak and sick, her heart is enduring and strong.
And as such, we all carry her in ours.