HER favourite colour was pink and she loved Minnie Mouse and Scooby Doo.
Monique Squires loved her big sister Olivia, adored her identical twin Zoe and unlike most three and four year olds she never complained.
Not once, her parents Danielle and Darryl recalled, right up to her death last October after her inspirational yet inevitably heartbreaking 13-month battle with a DIPG brain tumour.
“Cheeky Moniquey,” her mother said, “was always caring for others, with incredible empathy, always there to give cuddles to those in need.”
For those who never had the good fortune, or pleasure, of meeting her, Monique’s family described her as fun, smart, cheeky and beautiful someone who will never be forgotten.
Diffuse Intrinsic Pontine Glioma (DIPG) is as frightening as it sounds it is an aggressive and rare paediatric tumour which only affects about 300 children worldwide each year.
It strikes at the heart of childhood, affecting the pons portion of the brainstem, which connects the upper and lower parts of the brain, rendering nervous system function impossible.
The survival rate is zero.
Sitting in their Bamawm Extension home parents Danielle and Darryl with Monique’s sister Olivia and twin Zoe remember the person Monique was.
“She was cute and kind; I called her bubby because she had puffy cheeks and she liked her cartoons,” Olivia said.
Monique loved drawing people and love hearts and even in the depths of her illness her art continued to reflect this remarkable little girls nature it was always of people smiling.
“Her paintings which she did while she was so sick all feature people with huge gorgeous smiley faces, showing her character when that didn’t reflect her circumstances in the slightest,” Danielle said.
“Our little baby was in hell.”
Monique’s paintings now light up the walls of the Squires home, along with a fairy garden her sisters have made in her memory.
Her parents have her name and some of her art, in particular the love hearts she continually drew and the signature she would sign with such flourish on each piece, tattooed across their wrists and forearms.
“I think we really just wanted to have a tribute to Monique and let people know how brave she was,” her parents said.
“She just made her fifth birthday, she was really quite sick then but she was just such a little battler through it all.
“She didn’t once complain.”
Monique’s diagnosis turned everyone’s world upside down only days before her fourth birthday.
Her earliest warnings were bouts of dizziness, vomiting and headaches but without an identifiable cause.
But when her right eye turned Danielle knew it required more than a trip to an eye specialist.
They took her straight to the emergency department at Echuca hospital and from that point all their lives were changed forever.
Within hours Monique was being flown to the Royal Children’s Hospital where further tests revealed the tumour, already the size of a golf ball. Because of their location in the brain DIPGs are inoperable and other primary cancer treatments, such as chemotherapy, do not work on DIPGs.
“We wanted to have as much time with Monique as possible, to create more memories, so we went down that path of radiation,” Danielle said.
“She was just absolutely amazing, one of those kids who just took it on board.”
For the first six weeks of radiation mother and daughter lived in Melbourne at the Ronald McDonald House, clinging together emotionally through the treatment, while Darryl held the fort at home, trying to keep life as normal as possible for her sisters.
“It was hard on all of us, there was a point in the radiation treatment where she couldn’t really walk or talk,” Danielle said.
Then, incredibly, Monique started to improve.
After a positive initial response to the radiation, she was able to return home and start kindergarten in the New Year.
Monique may not have grasped it but her parents knew the limitations of any treatment and even as her horizons expanded within months her fast-growing tumour started to take a serious physical toll.
“Radiation did improve the situation but we were told the more radiation she had, the less the results would be,” Darryl said.
As private as the family was in its determination to make the most
of what time their beautiful little girl had left, the small town grapevine quickly had the community getting on board.
The Campaspe community rallied behind the Squires, raising $26,000 for them at an Echuca fundraiser, giving them the option of looking overseas and exploring alternative treatments.
Monique underwent surgery, performed by pioneering neurosurgeon Charlie Teo, which gave her another short reprieve, allowing the Squires spend more time together as a family.
“I will always appreciate Charlie Teo was honest with us, that with DIPG he shouldn't be able to save her life but hopefully would buy a little bit more time,” Danielle said.
“We just wanted to have as much time with her as we could.”
Monique was able to have her Make a Wish where she travelled to the Gold Coast and met and patted the dolphins at Sea World and then met Scooby Doo at Movie World.
Unfortunately shortly after she returned home her condition rapidly deteriorated.
“She has gone from a happy little kid, still running around, to her body simply and suddenly shutting down on her,” Danielle said.
“We were lucky to get the time with her that we did things could have been worse but we got those 13 months,” she said.
“We had our ups and downs through that time but we stuck together as a family and we made the most of it with our little girl.”
There is little funding for research into DIPG but traction is slowly growing.
“When something like that happens to your child and there is nothing you can do, its just really hard and unfair,” her parents conceded.
“And as parents we just want to raise awareness about this type of tumor because it is rare and there are no other treatments of radiation out there.
“Helping find a cure is really important because we feel that other children or families shouldnt go through what we went through because its just not right.”
During her final year Monique’s life was crammed with special moments visiting the Dubbo Zoo, Surfers Paradise, Melbourne Aquarium, Torquay, flying in a helicopter and many other adventures, all supported by various organisations and the generosity of individuals and businesses.
The Squires would also like to send their appreciation and thanks to Lockington Primary for its ongoing love and support, Echuca Palliative care and everyone who attended Monique’s fundraising night in Echuca.
“The night; as well as the other generous donations, were overwhelming and made us feel we were not alone in her battle we cannot express what it meant to all of us.
“We would also like to say a very big thankyou to CindyFelmingham, Rhonda Hann, Chrissie Drummond and Mel Haines for their efforts.”
“And Jan and Louis from Locky Kindergarten for the amazing extra effort they put in to make Monique’s kinder experience through all the hard times such fun, so caring and extremely loving.
“Thanks for all the local support and love and care that we have been through and giving us space when required.”
In memory of Monique her mother will run 15km in Run Melbourne, which raises money for the Royal Children’s Hospital.
“Monique had a lot of challenges through her journey and I guess that’s what’s going to help get me across the line because compared to what she went through, this run is nothing,” Danielle said.
“Its still raw and we really miss her.
“Monique we love you to the moon and back.”
An everyday hero account has been set up to raise money and awareness for The Cure Starts Now, an organisation which helped Monique across her journey and raises awareness for DIPG and the page has already raised more than $3500. To donate go to give.everydayhero.com/au/in-memory-of-monique-squires