Miracle survives 12 years
Published: July 3, 2007
A 12-year-old celebrated his birthday at a Gold Coast theme park last week.
While that in itself would hardly seem a newsworthy item, consider this fact - he was never expected to live until the age of 12, because he’s one of the oldest survivors of the type of cancer he’s lived with his entire life.
Jay Bull suffers from Neuroblastoma - a sold, malignant tumour which manifests as a lump or mass in the abdomen or around the spinal cord.
It is the most common extracranial solid cancer in infancy in childhood, with half of cases occurring in children younger than two-years-old.
It’s horrific, painful and most times fatal.
Quite simply, the fact that Jay is around to celebrate his birthday is seen as a miracle.
“Every birthday is a milestone, but this is a special one,” Jay’s mum Bronwyn said.
Neuroblastoma attacks the sympathetic nervous system - the network that carries messages from the brain throughout the body.
“The best way to describe it is as a little Pac Man eating his way around the entire body; it’s a terrible thing,” Bronwyn said.
Jay was flown to Queensland from his home outside Melbourne to help launch a special charity event, which saw a group of riders set off from Brisbane to Sydney.
Their involvement with Tour de Cure will help raise vital funds for three cancer charities.
After attending a Tour de Cure breakfast in Melbourne, organisers were so touched by Jay’s story of survival that they invited him to fire the starting gun in Brisbane.
On Monday he stood before the group, raised the gun, and set them on their way.
The trip also gave the pair a rare opportunity to relax and take time out from a disease that has consumed their lives for 12 years.
“We’ve never really had a holiday actually,” Bronwyn said.
Thanks to sponsors and Gold Coast theme parks, Jay and his mum spent some much-deserved time out seeing the sites.
While Jay is stable at the moment, his condition can only be described as partially in remission because of a dormant mass that sits on his spine.
“It’s like a ticking time bomb because we don’t know if it’s going to explode or just sit there dormant,” Bronwyn said.
“Once Neuroblastoma starts to go it goes very quickly, so you can’t let it. We have to keep on top of it.”
Keeping on top of the disease can sometimes be just as painful and exhausting as living with it.
Countless tests involve weeks of procedures on a regular basis.
“I glow in the dark,” Jay joked, talking about one of the radioactive tests that he is required to undergo.
On his website, Jay’s Journey, he talks about his outlook on life.
“My journey with cancer has taken up my entire life, but it has taught me a lot of things, and one is that you never give up.
“You fight the fight, and you make the most of every single day and you treasure every moment.”
His story has touched the hearts of many people, including celebrity Shannon Noll who got on board to support the family.
Around study and recovery, Jay has been selling arm bands to raise funds for Neuroblastoma research.
“We had a goal to raise $100,000 and I think we’re nearly there,” Bronwyn said.
She said because Jay had been so lucky, he wanted to do something to raise the awareness of a disease that most haven’t heard of.
“No body realises how many kids are dying from this.”
This week Jay returned home after a jam-packed week of fun at three theme parks and his duties as official MC of the Tour de Cure launch in Brisbane.
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