'complete shock'  | 

Mum of girl (6) with incurable brain tumour says diagnosis 'flipped world upside down'

The family are hoping to get their daughter on a clinical trial in America
Aaliyah McCormick

Aaliyah McCormick

Clodagh Meaney

The mum of a six-year-old girl who has been diagnosed with an incurable brain tumour has opened up about their horrific ordeal.

Aaliyah McCormick from Kilmore in Dublin became ill suddenly in July of this year.

The brave youngster woke up feeling ill and vomiting and after her mum took her to the doctor, she was told her daughter was unwell due to the summer heatwave.

Just hours later she was taken to hospital by her concerned parents where she underwent tests. After many examinations, a CT scan showed she had a shadow on her brain.

“It was a complete shock,” her mum Lauren told the Sunday World.

“She was just the healthiest child, so active. She was never on regular medication, she was always healthy, always active. She does GAA, swimming lessons.”

Mum Lauren, Aaliyah, dad Karl

Mum Lauren, Aaliyah, dad Karl

Just a couple of days later an MRI scan revealed that the shadow was a tumour located in the brain stem. A further biopsy confirmed that the tumour was a high grade malignant tumour, Diffuse Intrinsic Pontine Glioma (DIPG), the most deadly form of brain cancer in children.

“For them to tell you it’s stage four, and there's no cure, it’s like oh my god.”

“When they literally tell you [they can] keep it from growing and there’s nothing they can do. It just flipped our whole world upside down.”

“We’d planned for the future and then from that day, everything changed.”

The family were given the heart-breaking news that Aaliyah’s tumour was inoperable because of where it is located - giving them only one solution: radiation and chemotherapy.

“Radiation is the one thing that can kill the tumour and slows down the growth. The chemo she's on is like an add on to help further shrink it and stop it from growing.”

“The scan in two weeks is to see if it is working. They’ll ring you if it’s good news, and if it’s not good news you’ll be called in to a meeting,” Lauren said.

“If it's good news it means chemo has worked and we’ll continue for six months, but there's only a 10% chance of it working. More than likely after a couple of months the tumour will start growing again and you can't go in with radiation again until the brain has healed.”

Aaliyah McCormick

Aaliyah McCormick

Lauren said doctors have told her, and Aaliyah’s dad Karl to spend their time together wisely.

“They said to me the radiation and chemo can only do so much, they tell us to make memories and spend your time wisely,”

“Stuff happens in life, and you've kind of just got to get on with it. We can’t sit around upset every day we’ve got to stay strong for Aaliyah, and be positive for her. At the moment we’re doing our best to get through literally everyday. We’re not even thinking about tomorrow,” Lauren said.

“It’s so unpredictable. Everyday when I wake up I don’t know what the day is going to hold. I can’t plan anything anymore because it’s just so unpredictable.”

Lauren decided to take matters into her own hands, and began researching how she could further help to get her young daughter treated. She found a clinical trial called ‘ONC201’, which is available in America only, and set up a GoFundMe to help the family cover expenses.

“They don't recommend going abroad because they say nothing has worked but when you look at the bigger picture, you need to try. I can't just take their word for it, and if after the six months were left with nothing I wouldn't just sit around so that's why I set up the GoFundMe because there are alternative treatments out there,” Lauren explained.

Aaliyah McCormick with her parents Karl and Lauren

Aaliyah McCormick with her parents Karl and Lauren

“I found out more from these families than our own oncologist, and he said you will more than likely find out more from the families who are going through it.”

“It’s not going to work for everyone, but there are families out there who said to me don't give up hope, because it's so fast growing they could literally turn around tomorrow and say 'listen the tumour has progressed’ and that’s when we literally have to pack our bags and go,” she said.

“I just want to be ready. I didn't want to be more stressed and worried about money when the time comes to go.”

Lauren said that the clinical trial would involve her daughter taking a tablet once a week - unlike other treatments which might be more invasive.

“We don't want to put Aaliyah through more trauma,” she said.

“If it works - it can prolong her life.”

Aaliyah McCormick

Aaliyah McCormick

Aaliyah, who is currently on her second round of chemotherapy, is handling it like a champion.

“It’s just a tablet she takes once for five days every four weeks. It’s not like chemo as we’d know it - with an IV drip in the arm where you get really sickly and lose your hair - this chemo is a bit different,” Lauren said.

“She’s got a loss of appetite and a bit of sickness, but it’s nothing we can’t handle.”

“She’s doing really well, even better than what they expected. They told us in a meeting earlier this week that it is good news from their perspective.”

You can donate to Lauren’s GoFundMe for Aaliyah here.

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