Come on Orange – let’s show some love for Lily
“Any time the kids have been to the hospital in the past, we were always sent out with a ‘They'll be ok’,” said Delene Wilson, whose family found their world turned upside down after a hospital visit 12 weeks ago.
“This time the doctor sat on our bed and said, ‘Well, I've got some bad news. Lilly has a mass in her brain, we don’t know what it is, but we've got to get it out’.”
“It was April Fool’s Day,” added 17-year-old Lily, Delene’s daughter.
“Yeah it was the 1st of April,” went on Delene. “I sent Lily to her doctors because she had really bad headaches and she was sleeping a lot. The doctor sent her to an eye specialist because her eyes didn't look right and then the eye specialist sent her to the hospital and a CT Scan found a mass on the left side of her brain a 6 x 4 x 4 cm tumour.”
“It is called anaplastic ependymoma grade 3 and it is quite rare,” said Lily. “It’s mostly found in under 10-year-olds”
Lily was flown to Sydney that night, and three days later, after a lot of steroids to reduce the swelling, she was operated on.
“The neurosurgeon was very blunt with Lily when she asked what would have been her prognosis,” said Delene. “He basically said she would have been dead by her birthday in December this year.”
Following the operation to remove the tumour, Lily has endured 28 rounds of radiation, sometimes twice on the one day six hours apart. Later next month, she will undergo an extensive MRI scan of her head and spine to see if the operation and follow-up treatment has been a success.
“The doctors did say they did a complete resection, that means they got all that they could physically see and, as you can see on Lily’s scalp, they've treated a very big area… so we’re hoping,” said Delene.
“But it could still keep coming back,” said Lily. “There is a chance it could have been successful, but there is also a very high chance that it wasn't successful as well. And if comes back, they have to go back in a cut it back out… I can't have radiation again.”
While hoping for the best, Delene is also preparing for the worst. Last week she took Lily to Melbourne for a consultation with a rare cancer specialist at the Royal Children's Hospital to plan the next step of her treatment if required. That could mean travelling to specialist treatment facilities in the United States or Germany.
“We could end up over in America for proton therapy. We may need to do that or whatever he decides,” said Delene.
“I’m hoping that she's well and wow it's worked, and we just have to have an MRI every three months for the next five or ten years, but we don't know. We can't predict the future, so it makes it hard to know where you are going to go, but I try think of the positives.”
Speaking with Delene and Lily, they both appear to be taking it all in their stride, but appearances can be deceiving they tell me.
“Lil has been angry, she has been upset, she has wanted to finish her life... it has been hard. We've got a lot of great friends around us, which helps, a lot of support but it has been hard… especially on her,” said Delene.
“It is all the unknown at the moment, it is all very difficult, and I've had to stop hair dressing because I just can’t hair dress with Lily like this. I can’t have people coming through the house and asking me questions all day. It is not what I want to deal with. I want to concentrate on her, not tell everyone the story over and over.
“People are asking mum, ‘Is she terminal? Is she going to survive? How much longer has she got left?” said Lily.
“And that is really difficult,” said Delene. “I find I go out early in the morning if I need to get something, so I don't have to run into people I know... I know it's sad, but I just don’t want to talk too much about it… It hits me in the face every time they ask that question: Is she terminal? What is going to happen with her?”
Although Delene has health insurance. Lily’s illness has put a considerable financial burden on the family, especially with Delene forced to stop working to care for her daughter.
“I had a very busy business, but it has all had to stop, because my main priority is her,” she said. “I've had to stop my house payments — the ANZ bank hardship team have been amazing — and then we have been trying to fundraise to put us back on track and to get some sort of normality— hopefully.”
Friends of the family are fundraising via a Facebook page, Love for Lily – Together we fight Brain Cancer, where you can purchase candles and caps that Lily herself has created.
They are also preparing for a big fundraising event on 20 July — an 80s Disco at the Orange Ex-Services Club.
“The love for Lily’s 80s night should be a hoot, should be lots of fun and you know a chance for Lily to have some fun too,” said Delene.
“Gabe Middleton and Malcom Key will be singing all the 80s songs, Betty Botox is our MC, she's a hoot, and we’ll have raffles and prizes for the best dressed.
“All these little things are adding up to keep our family going and the bills going and also our plane tickets to America or whatever we need to do… we have got some amazing friends helping us and we are making the most of it.”
So come on Orange - let’s show some love for Lily!