Weeks after we welcomed our miracle baby, she was diagnosed with cancer

Every week, Australia loses around three children or adolescents to cancer, while saving them through chemotherapy can have devastating long-lasting effects. Thankfully, there is hope on the horizon.

Poppy Middleton was diagnosed with a rare leukaemia at just 11 weeks old. Source: Supplied

Watch Insight's episode on Living Longer — and how to live both longer and better — on SBS On Demand.

Carly and Tresne Middleton had longed for a baby, but when she arrived they enjoyed just a few joyful weeks with her at home before their lives were flipped into chaos.

"We were always dancing around the house, singing and laughing. It was a little bliss bubble," Carly told Insight.

But then, baby Poppy didn't seem quite right. She wasn't sleeping well, she was uncomfortable and was crying a lot. She was also vomiting a lot and had bruising on her thigh.

The Newcastle-based couple decided to take her to hospital.

"We didn't know if we were being overcautious. But the paediatric doctor took one look at her and said, 'she's really pale'."

Living with a rare leukaemia and being so young, Poppy Middleton was given just a 20 per cent chance of survival. Source: Supplied

At 11 weeks old, Poppy was diagnosed with high-risk infantile acute lymphoblastic leukaemia, a rare disease that affects five to six babies in Australia each year.

She was given a 20 per cent chance of survival, which was further reduced because of three factors: being under six months old, having a white blood cell count of over 150 at diagnosis, and having the mixed-lineage leukemia (MLL) gene mutation.

For two days Carly and Tresne were in shock, heartbroken and traumatised about the mammoth fight their baby daughter was facing.

"It turned our world upside down. I kept fainting and collapsing," Tresne said.

Carly said: "From then on, the weeks became a blur. We knew we couldn't change it and we had to learn to live with the hand that we'd been dealt."

Carly (left) and Tresne Middleton had been trying to conceive a child for years before Poppy was born. Source: Supplied

The couple had already faced a difficult journey to conceive Poppy, having undergone fertility treatment for years.

"We called her our miracle baby."

Toby: born with cancer

Toby developed cancer in utero and his doctor noticed a 'mass' on his arm during a prenatal scan.

But it wasn't until a few weeks after he was born that his parents, Queensland-based Jenaya and Josh Ward, received a diagnosis: Toby had infantile fibrosarcoma.

Jenaya was scared for her first baby - that the cancer had spread, that nothing could be done.

"I was thinking, 'am I going to have to say goodbye to my baby boy before I've even had the chance to get to know him'?"

Toby Ward developed infantile fibrosarcoma in utero. Source: Supplied

"Very quickly, we adapted to living hour by hour," she told Insight. "Now we've been living in survival mode for two years. You have to keep going and you have to believe that your child will too."

Children are treated with the same chemotherapy as adults and Toby had his first round at just five weeks old. Before he had even turned one, he had undergone 12 rounds of chemo and had many blood transfusions, as well as around 80 injections over two months to help his immune system recover.

For Jenaya, allowing her son's tiny body to be injected with powerful chemicals has been heartbreaking.

"It's an impossible decision. Chemo takes your child to the brink of death and tries to kill the cancer before them. It's so hard on their little bodies, it's so hard as a parent knowing that your newborn is being pumped full of toxic drugs.

"No kid deserves to go through the brutality of chemo."

'Between a rock and a hard place'

Each year in Australia, more than 1,000 children and adolescents are diagnosed with cancer and at any one time, around 2,000 children and young adults are being treated for the disease, the Children's Cancer Institute (CCI) estimates.

But while it's considered a rare disease in children, it still kills more kids in Australia than any other disease.

At any one time, around 2,000 children and young adults are undergoing cancer treatment in Australia (compared to hundreds of thousands of adults). Source: SBS

"There are over 150 different types of cancer children can get, which makes each one even rarer," explained Associate Professor Vanessa Tyrrell, leader of the CCI's Zero Childhood Cancer Program, Australia’s world-leading precision medicine program for children with cancer.

"And when a baby has cancer, we believe something was triggered in their embryonic development."

Tyrrell says while chemo is "dangerous for everyone", the risks "ramp up" in children, and especially babies, because their cells are proliferating so quickly.

"If the children do survive their cancer, over two-thirds of them will have serious lifelong side effects, and often they will be life-limiting, which is a direct result of the treatment rather than the cancer."

These can include heart conditions, infertility, stunted growth or even intellectual disability as a result of brain cancer treatment.

"Every parent wants to do the best for their child. And when they say yes to chemotherapy to save them, they're also potentially doing a lot of damage. They really are stuck between a rock and a hard place; it's a horrendous position," Tyrrell said.

The Zero program creates targeted therapy based on the genetic cause of the cancer in the hope of improving treatment outcomes and avoiding chemo altogether. This will also save the child from having to isolate as a result of chemo killing their immunity, which can be psychologically damaging.

While cancer is considered a rare disease in children, it still kills more kids in Australia than any other disease. Source: SBS

All children diagnosed with cancer in Australia now have access to the program, but there is still a long way to go, Tyrrell says.

"While we can identify the genetic cause of the cancer over 90 per cent of the time, only 70 per cent of the time are we able to make a potentially actionable recommendation.

"And there are still cancers that have few or no options."

Treading an uncertain path

For Toby, the chemo wasn't successful, and the tumour continued to grow. But targeted therapy was working.

Genetic testing revealed Toby’s cancer was sensitive to the new-generation drug crizotinib, which has managed to shrink his cancer and enable him to meet his developmental milestones.

When they say yes to chemotherapy to save their child, they're also potentially doing a lot of damage.

Associate Professor Vanessa Tyrrell

Now almost two years old, Toby is in remission.

"The difference between him on chemotherapy and him on targeted therapy was like night and day," Jenaya said. "With chemo, he was in hospital for days and suffered all the side effects. But on the targeted treatment we were able to administer it at home, he was able to run around and he was able to start going to kindy."

If children do survive their cancer, over two thirds of them will suffer serious lifelong side effects. Source: Supplied

But the path forward remains uncertain. Toby will have regular scans to check for any recurrences of the tumour while Jenaya remains deeply worried that blood tests will eventually reveal side effects as a result of the chemo.

For now, she says they are simply learning to live outside of the hospital.

"We try to not be scared every time we walk out the front door about what germs Toby will be exposed to."

Adjusting to normal life

Baby Poppy endured an incredible 129 rounds of chemotherapy, 113 blood transfusions, two rounds of immunotherapy, a bone marrow transplant, daily steroids and countless other medications.

Tragically, she died in February 2023 at just 20 months, after spending 17 months of her short life in hospital.

"We were still trying new treatments and therapies up until two weeks before she passed. We never gave up hope and I genuinely thought this story would have a happy ending," Carly said.

The Middleton family became used to daily life at the Children's Hospital at Westmead in Sydney, where Poppy was being treated for leukaemia. Source: Supplied

So far, it hasn't. Carly and Tresne continue to suffer anxiety and PTSD over the trauma of caring for Poppy, while trying to rebuild their business and conceive another miracle baby. This year, they've already been through five rounds of IVF and suffered a miscarriage.

They have also felt very unsupported.

"When you have a baby, there's all these supports in place for parents, but when you lose a child, there's nothing. We went from living in a hospital with all these beautiful nurses around us who checked in on us daily to going home and being just us two," Carly said.

"Hospital became normal life for our family. And now we've got to try and adjust to life without Poppy.

"It can feel very isolating and very unfair, but we try not to focus on that. We've got to try and pick ourselves up because Poppy didn't get to live, but we do.

"We have to try and live our best life for her."

Readers seeking support and information can contact Lifeline 24 hours a day online and on 13 11 14.

The Australian Centre for Grief and Bereavement can be contacted on 1800 642 066.

Griefline provides confidential support on 1300 845 745 and via griefline.org.au

For more on childhood cancer or to learn more about the Zero Childhood Cancer Program, visit the Children's Cancer Institute.