By Tyler Wright
A Lilydale family is flying the flag for awareness of paediatric cancers during Brain Tumour Awareness Month.
Nicole and Brian McAleer’s eldest daughter Lucy passed away on Saturday 12 March 2022 at eight years old, after a diagnosis of a devastating form of brain cancer, diffuse intrinsic pontine glioma (DIPG), in July 2021.
Lucy was a student at Mount Evelyn Primary School and loved Harry Potter, green sea turtles and basketball.
After being hit in the head at by a ball basketball training one Monday night, Lucy appeared to be concussed and started falling over.
Showing signs of fatigue, dizziness and slurred speech, an MRI soon confirmed a lump had formed.
Nicole said the past year has been “incredibly difficult” without their daughter.
“We have experienced all the firsts, had to navigate life without Lucy whilst still being parents to our other two girls Olivia (eight) and Amelia (just turned four). As children they deal with grief and their own understanding very different to us as adults so that has also been a challenge,” Nicole said.
“There have been huge amounts of support from family, friends, school community and the local community which has been incredible. From fundraising events including a car cruise, basketball game and Irish dancing events plus more, it has been overwhelming and heartwarming knowing how many people are out there wanting to help.”
Nicole said over the past year, there have sadly been more children diagnosed and pass away from the “cruel disease” which affects 20 Australian children and their families each year.
Most children will die from the disease within 12 months of diagnosis.
“When you look at statistics for funding (from the government) for cancer as a whole, very little is given to paediatric cancer and even less into brain cancer with even less again into DIPG. DIPG has had the same outcome as it did more than 50 years ago,” Nicole said.
“The same palliative care treatment being radiation which at best, buys a patient an extra 3-4 months of quality time before progressing and them going downhill usually very quickly. This needs to change.
“Since 2015, the government has invested less than $1 million into DIPG. It is completely unacceptable. Leukemia has gone from a 10% (check statistics) survival rate to a 90% survival rate which is phenominal. But brain cancers survival rate is sadly no different to over 30 years ago.
During Brain Tumour Awareness Month, people will ‘Go Grey in May’ to raise funds for childhood brain cancer.
Nicole is encouraging people to wear DIPG badges not just throughout May, but all year round to raise awareness.
“Mine stays on my bag all year,” she said.
“We do not want other families to have to go through what we and so many families have gone through, or are going through. And we know there are so many children yet to be diagnosed yet.”
Nicole said there are scientists in the country working on effective treatment.
“Matt Dun from Newcastle founded RUN DIPG when his own daughter Josue was diagnosed with DIPG. He is a scientest researcher and was researching other cancers and immediately switched to focus on helping his own daughter.
“Since then he and his team have come up with a drug trial combination which proves effective for some time. However this trial was made available overseas before it came here.
“This disease doesn’t wait for anything. So we need these trials here and approved very quickly.”
Associate Professor at Walter and Eliza Hall Institute of Medical Research, Dr. Misty Jenkins, has been working on a treatment or DIPG, with her lab finding some “promising hope,” Nicole said.
“There looks like a trial is ready to start soon. However, its the hurdles that need to be jumped in order to get the trial approved and begun that take so long which results in more children dying which is not good enough,” she said.
“We need these trials approved straight away to get our children onto them to give families some sort of hope.”
Known as a jokester and entrepreneur, Lucy and her dad created a joke book before her death, with the family raising $800 in donations in exchange for the book at her funeral.
“Lucy’s joke book has been very popular. We’ve sold them at a few places. Swimming, events, school and online,” Nicole said.
“They are a great little gift and the kids love the Dad jokes in them.”
The McAleers are selling candles named ‘Light for Lucy’ with profits going to RUN DIPG.
Lucy’s books are also for sale for $3 each or two for $5, with all proceeds going straight to RUN DIPG.
‘Light for Lucy’ candles are available at http://www.lucyslegacy.net/lucys-store.html#/, with her joke book available at https://rundipg-org.grassrootz.com/lucy-s-legacy/lucy-s-laughs
