When little Eddie was just three years old, his mum Angie noticed that he’d begun having low-grade fevers and every so often seemingly random bruises would appear on his legs.
Then he developed a cough, a rash across his body and became lethargic. Doctors sent him for blood tests, suspecting pneumonia.
“I remember thinking this was the worst possible thing that could happen to us, our little boy having pneumonia,” Angie smiles, then grimaces before recounting what came next.
“After the tests were run, the doctors sent as many people as they could out of the paediatric ward. I thought that was a bit weird,” she says. “I thought maybe it was because Eddie was screaming too much as they were trying to get a needle into his dehydrated body.”
"He lost one to two litres of blood. That was an incredibly scary time for us."
“Then they came over to us and said we should sit down. The doctor bent down to my level and held my hand and said she suspected Eddie had blood myeloma. I said, ‘What’s that?’. I had no idea. Then she said, ‘Eddie has cancer, and the next 24 hours will be very touch and go’.”
It felt like everything in the room froze, Angie says, and as if she was outside her own body. For a few moments, she couldn’t breathe.
A resuscitation and retrieval team was sent to transport Eddie to Brisbane’s Lady Cilento Hospital.
“He was so incredibly fragile and sick,” Angie says. “We almost lost him that night. He was on the cusp of crossing over. And just a few days earlier he’d seemed healthy and happy.”
Coping with the unimaginable
How does a parent handle such a challenge? Angie says she and husband Adam never really had a choice.
“I think we are born with natural coping mechanisms,” she says. “I think that honestly, we aren’t given a chance to be able to stop and breathe. We don’t get that opportunity. It’s basically a matter of, ‘We’re keeping our child, we’re not letting our child go’.”
“That is not a question you ask yourself in that moment. You just kick into survival mode. You put everything that could possibly be happening to you on hold. Your sole focus in your life is your child getting better.
And Eddie did begin to get better, but not without an enormous amount of suffering along the way.
During the first three days after his fateful night, Eddie was given eight bags of blood. He’d go on to spend 124 nights in hospital. Treatment included nine months of chemotherapy, several surgeries, countless needles and a massive amount of drugs. At one stage, Eddie developed a severe and life-threatening staphylococcus infection around his port-a-cath.
The bear that cares
One awful day early on in his treatment, having faced needles, chemotherapy, illness, vomiting and hair loss, a nurse brought to Eddie’s bedside Frankie Firefighter Bear from The Kids’ Cancer Project Bear Program.
“His eyes just lit up,” Angie says. “At the time he was obsessed with fire engines and the bear gave him a focus. It took his mind away from the awful experiences he was having and that teddy became everything to him.”
Eddie, you're our superhero.
Later, Eddie received a second bear, after a dreadful day that involved him bleeding profusely on the operating table. The blood loss was caused by his PICC line being pulled out of a main artery in order to insert his port-a-cath.
“He lost one to two litres of blood,” Angie recalls. “That was an incredibly scary time for us.”
This time it was Doctor KC Bear.
“He received that one to let him know he was a superstar,” Angie says. “He loved that bear, too. Both bears meant so much to him because they were the two types of people he looked up to the most – firefighters and doctors. They were a big part of what got him through the entire experience.”
Eddie’s treatments worked as well as they could to get rid of the cancer so far, but he was left with a rare and severe case of bilateral (femur, tibia, ankle and foot) bone necrosis, which is debilitating and painful.
“But we still have our boy with us,” Angie says. “Our lives will never be the same, but the little things in our journey made the biggest impact on us.”
Eddie and all his teddies!
“These bears are worth more than their weight in gold. They give kids hope that it’s not all bad, that going into chemo or another surgery isn’t that bad because they have a bear to hold and hug during the worst moments.”
“I’m eternally grateful to everyone who has donated a bear to our oncology community. They do not go unnoticed. This act of kindness gives children a reason to smile.”