'My son was diagnosed with a rare cancer. His baby sister was his only chance of survival.'

It started with regular bouts of illness that doctors dismissed as "daycare germs". But two-year-old Tommy seemed to be catching bugs constantly. 

Then he developed a rash. Hand, Foot and Mouth disease, the doctors said. But something didn't feel right, not to Tommy's mother, Kylie Bacon. The rashes seemed too extreme, the illnesses too frequent. 

Still, he kept getting better, so the family embarked on a planned trip to the UK, to celebrate Tommy's father's birthday with family. 

"The day we left he was completely fine. No fevers. But when we landed in the UK, I looked inside his mouth and he had tonsillitis, but his tonsils were the biggest I've ever seen."

Watch: Carlina from Cancer Chicks shares her story. Article continues below.

Video via Cancer Chicks.

They went to a walk-in medical centre, who promptly sent Tommy to the nearest hospital. Initially, they were told to go home and give their little boy antibiotics. Only he wouldn't take the medicine, so they were forced to admit him. 

Tommy was put on fluids and tests were run — this is when Kylie first heard doctors say the word—'cancer'. Initially, Kylie was in denial. 

"My logical mind kept hoping it was a secondary infection. I was trying to find all of the reasons why it might not be cancer."


Tommy was transferred to the oncology centre in Southampton where he was officially diagnosed with Juvenile Myelomonocytic Leukaemia (JMML), an incredibly rare, slowly developing blood cancer in children.

"These kids have between 10 months and two years before they die, and we didn't know how far along Tommy was in the process," says Kylie, who was six months pregnant at the time. 

Tommy remained in the UK hospital for another two weeks until he was stable enough to return to Perth for urgent treatment. 

Tommy in the hospital. Image: Supplied. 


"We were lucky we had the support of family in the UK, right there when we wouldn’t have if we were at home when we received the news," Kylie says.

"But the hardest phone call I ever had to make was to my dad to tell him that Tommy had cancer."

Tommy's only chance of survival was a Haematopoietic Stem Cell Transplantation (HSCT). 

"We knew the only option for a cure would be a bone marrow transplant, but there was no one on the register."

The news prompted Kylie and her family to make a public appeal in conjunction with multiple charities. As a result of their campaign, more than 5000 people registered. 

"You can't be specific on the register, you can’t just join for Tommy... so we started looking through the register and trying to find matches."

The news of an almost perfect match was exactly what the family needed to hear. But their joy was short-lived. 

"The week before, we got a call saying the donor had fallen through," she says. 

"It was devastating because you know that your child can't survive without it."

Given Tommy's required ongoing treatment, Kylie decided to have her baby induced, to ensure her husband could attend the birth, and they could both be there for Tommy. 

Kylie and Aria. Image: Supplied. 


"As we were driving into the hospital to have her, I got a phone call from the specialist team to say they found a second donor."

Following the birth of Tommy's baby sister, Aria, Kylie opted to store her cord blood with Cell Care, something they had intended to with when Tommy was born, but never did. 

As the family left the hospital, they received another call. The second donor had fallen through. 

"It was incredibly overwhelming. We didn't really know where to go from there."

Despite their fears for Tommy, Kylie and Dave made the most of their special time with their new baby, who was able to spend some quality time with her big brother.


"It was really special to have the kids together, and have her and Tommy meet each other."

When Aria was two weeks old, Kylie received another call. It turned out, Aria's stem cells were a perfect match for Tommy's, even their blood types were the same. 

"We were told on a Thursday, and he went to hospital for the transplant on the Monday. The weekend before we did a fake Christmas, as Tommy would be in hospital. We were told to expect anything up to four months in hospital. They're in isolation, a hyper sterile environment."

The weeks following the transplant were tremulous as the family battled isolation, blood counts, test results, temperatures, infections and bone marrow aspirations.

Image: Supplied. 


Tommy endured one of the most brutal regimes a person could experience, but Kylie says, he did it with a smile on his face. 

"He led the way for us. We didn’t know how to be strong for him. But he was always smiling and being cheeky."

Sixteen weeks and two days after Tommy received his sister's stem cells, Kylie and Dave received the phone call they had longed for: "There is no PTPN11 in Tommy's bone marrow. Tommy is cancer-free."

Tommy returned home two days before his third birthday. 

"There are no words for a process like this," says Kylie. 

"Aria was not planned, she was a surprise pregnancy. I love the fact that she was able to save Tommy's life without enduring anything intrusive. To save his life is such a gift."

The Bacon family. Image: Supplied. 


Kylie says it's critical that more people join the Australian Bone Marrow Donor Registry, or choose to store their new baby's cord blood. Doing so could save a life, just like Tommy's. 

Whilst there is still a high chance of relapse Tommy will be monitored closely, but for now, his family is relishing in their healthy little boy.

"For me, it was like being able to breathe again for the first time in a long time. You don't realise you're constantly holding your breath," Kylie says. 

"We decided to love more than fear, because we didn't miss out on the good stuff we did have.

"But Tommy is writing his own story. The condition is so rare that you don’t know how it's going to go, he tells us 'Tommy brave' all the time."

"I don't know how we would have got through it without him. He always finds a capacity for joy."

Feature image: Supplied.