Claire Casbolt loves unicorns, mermaids, art and her friends.
She has just turned seven and planned her biggest party yet, with face painting, ponies and a jumping castle.
Sadly, her seventh birthday will likely be her last.
In June, Claire’s mother Meghan Tucker noticed her sassy, sparkly schoolgirl acting clumsier than usual.
She was sent to the emergency department by a concerned doctor.
Hours later, Claire was diagnosed with an aggressive type of brain cancer.
That was only three months ago.
But doctors have warned her family that children with this type of cancer rarely live more than eight months after a diagnosis.
A bit clumsier than usual
It started with a couple of falls.
One was bad enough to end with a split lip.
But there was nothing physically different that hinted Claire had a killer tumor inside her.
It wasn’t until she was eating differently at her grandparents’ house that her mom thought something might be off.
“Claire started becoming a bit clumsy and awkward in her walking,” Melinda Chapman, a relative of Claire’s, says.
“She was at my house for dinner, and she was chewing really awkwardly.”
Claire’s mom mentioned she had been “falling over a lot” and planned to ask a GP for a referral to check Claire’s hips – thinking the clumsiness might be related to the hip dysplasia she had as a baby.
Doctor sends Claire straight to the emergency room
At a check up for her cut lip on Friday, June 21, Meghan told the doctor about Claire’s altered walking and eating, which only occurred in recent days.
The doctor didn’t waste any time, telling them to go straight to the emergency department of the Royal Children’s Hospital in Melbourne.
Claire was taken in for an MRI, with her mom and dad Mitchell beside her. The next day they got the results. A brain tumour was growing at the base of Claire’s skull.
The six-year-old was diagnosed with Diffuse Midline Glioma (formally known as DIPG), one of the most aggressive types of childhood brain cancers.
There is no cure. Due to the aggressive nature, she started treatment immediately.
Instant decline in health
Claire’s deterioration has been cruelly swift.
“She’s always been one of those sassy kids with a dry sense of humor – she’s not backward in coming forward,” Ms Chapman fondly recalls.
Within days of her symptoms starting, the craft-loving, energetic Claire weakened into a girl who struggled to walk and talk.
“It was frightening for me seeing her on Monday night, walking with a bit of wide gait, and her face a little droopy. And seeing her Saturday morning after her MRI, and she could hardly walk or talk.”
No tears allowed around Claire
As soon as the family got the diagnosis, Claire’s mom Meghan went into protection mode. No one was allowed to cry in front of Claire.
“Meghan was very stoic, she was clear, if anyone visited, she didn’t want them to be upset in front of Claire,” Ms Chapman says.
“She was protecting the space around Claire. She said we all had to be happy.”
Ms Chapman’s husband, Steve – Claire’s grandfather – lost a daughter to cancer, and took hours to compose himself in the hospital before seeing his granddaughter.
“We just knew it was important that we were there to support them.”
Over the next eight weeks, Claire’s body endured 30 radiation sessions, two CT scans, 32 general anaesthetics and 10 blood tests.
Explaining the difficult road ahead to their girls, Claire and her big sister Olivia, 10, has been one of the biggest challenges for Meghan and Mitchell.
“The initial conversation was Claire had a lump in her head stopping her from walking and talking properly,” Ms Chapman says.
“Now we’ve said Claire has brain cancer, and Olivia knows there is a team of doctors doing everything they can for Claire.
“You can see Olivia struggling to understand why Claire is behaving and looking different … her world has been turned upside down.”
Family plans big party for Claire
While her condition has worsened at a “rapid” pace, Claire has kept a sense of humour and enjoys drawing, painting and playing her iPad.
The family has tried to go on memorable outings, but they want life to remain as normal as possible.
“We’re pretty shell-shocked,” Ms Chapman says. “We’re torn between wanting normality for the girls, and not knowing how much time we have left with Claire, so wanting to make things special.
“You can see her stamina is getting less and less.”
One special memory the family has been focused on is Claire’s party this weekend.
Her 7th birthday will be a huge celebration at her nana’s house, with activities and entertainment generously donated by the community.
“All she wants is a unicorn-themed party and a jumping castle. She just wants to be with her friends and cousins,” Ms Chapman says.
“It’s pretty tough not knowing how much time you have left with someone.”
‘The road ahead is heartbreaking’
Claire’s parents have agreed to put her on a trial drug, for the “minute chance” it gives her more time, but with bigger hopes it will help families facing the same nightmare.
Meghan and Mitchell have only survived this unimaginable time because of the loving support of friends and family.
“Their resilience and determination are unwavering, but we know that the road ahead will be heartbreaking,” Ms Chapman says.
“Meghan and Mitchell just want to give Claire a good life, that’s all. There’s not a lot of time for grieving or thinking of life after Claire … We’ve got to find hope where there is hope and make her time special.”
A GoFundMe page has been set up to support the family with donations to be used for medical expenses and making memories for Claire’s final months with her family.
Recent Comments