Children's Cancer Institute

Diagnosed with cancer at just 11 weeks of age, beautiful Poppy Grace demonstrated strength and resilience from the very beginning, inspiring courage in others. She had smiles a plenty, and she gave them out liberally, ensuring she made eye contact and acknowledged everyone in the room. This empathetic nature grew with her, and she had social intelligence well beyond her years.

Pre-diagnosis

At Poppy’s 6-week vaccinations, the nurse noticed a bruise on Poppy’s thigh and recommended having it checked by a doctor. Poppy’s parents, Carly and Tresne, didn’t think much of it but took Poppy to their GP who sent her for an ultrasound. The ultrasound report said it was just a bruise and it wasn’t investigated any further, unfortunately (bruising is a sign of low platelets and can be a sign of leukemia).

Leading up to diagnosis, Poppy wasn’t sleeping well. It was hard to get her comfortable and she was crying a lot. As new parents, Carly and Tresne thought this was just what babies did. When Poppy began projectile vomiting large amounts, they decided to put their minds at ease and take her to hospital.

At the hospital

The paediatrician noticed how pale Poppy was and that her belly was enlarged. He sent her for a spleen ultrasound straight away and took some bloods with great difficulty. Within an hour the doctor had results and called Carly and Tresne to come back immediately.

He sat them both down and said that Poppy had an enlarged spleen and an extremely high white blood cell count. Her pale skin was because her haemoglobin was just 23 (a normal level would be above 95). The fact that she was still awake and responsive with this haemoglobin count was a testament to how much of a little fighter she already was.

The doctor gave Carly and Tresne a letter and sent them straight to the John Hunter Oncology Day Unit. When they arrived, only one parent was able to go in due to strict COVID-19 protocols. Carly raced Poppy through while Tresne was refused entry and had to sit at the entrance, distraught. Eventually, the staff member at reception phoned the oncology day unit and they allowed Tresne in.

Doctors from the Paediatric Intensive Care Unit (PICU) came into the Day Unit to draw Poppy’s blood. After persisting for over half an hour, they finally got a vein. Her blood was so thick from the leukemia, it came out like a thick syrup.

Poppy was taken for emergency surgery to have a temporary IV line inserted into her neck, so she could receive much-needed blood products and medications. Carly and Tresne were told that she might not make it through the surgery.

Diagnosis

Poppy made it through surgery and was admitted to the PICU, where she started treatment straight away. Doctors gave Poppy double maintenance fluids into her neck IV line to help her kidneys deal with the extra potassium released when tumour cells die off, reducing the risk of kidney failure. It was touch and go, hour by hour. Poppy was diagnosed with High-Risk Infantile Acute Lymphoblastic Leukemia, a rare leukemia that affects five to six babies in Australia each year.

She was given a 20% chance of survival; however, this was further reduced because she had the trifecta of high-risk odds stacked against her: being under 6 months of age, having a white cell count of over 150 at diagnosis, and having the MLL gene mutation.

Carly and Tresne spent the first two days in complete shock, heartbroken and traumatised about what their miracle baby girl was facing. Poppy was such a long-awaited gift, and they treasured every moment with her. Due to Poppy’s rare diagnosis, the only chance of a cure was to have a bone marrow transplant. The search had already begun to find a suitable donor from a worldwide register, even though the odds of Poppy making it to transplant were very low.

Treatment

Poppy got through the first 48 hours in PICU and was moved downstairs to the place she would call home for the next 13 months: J1 Paediatric Oncology Ward. She had a bone marrow aspirate, and her leukemic cells were sent to the Zero Childhood Cancer (ZERO) team to be tested against a variety of chemotherapy agents.

After several rounds of chemotherapy, Poppy had her first round of immunotherapy (Blinatumomab), which lasted 28 days. It was at this point, four months into treatment, that she was finally able to spend some time at home. But sadly, Poppy’s leukemia relapsed.

She spent most of the next 8 weeks in PICU as she experienced chemotoxicity, severe mucositis, and constant vomiting. We test these drugs in cells derived from children with the same subtype of leukaemia that Poppy had (MLL-r leukaemia). Once promising drugs have been identified, we then look at how they are killing the leukaemia cells, to learn about weaknesses in these cells that can be exploited.

This research will enable us to develop more targeted and personalised therapies for children with infant leukaemia that not only improve survival, but also reduce the exposure of these babies to drugs that do not work for them, thereby improving their quality of life.

All in all, Poppy received 547 days of active treatment, including 405 overnight hospital stays with rarely more than two or three days in a row at home. Poppy took all the ups and downs with such resilience that it shocked her doctors. She was stoic and tough, undergoing most of her treatment with a smile, a dance, and a giggle.

Poppy endured an incredible 129 rounds of chemotherapy, 113 blood transfusions, 37 lumbar punctures (where doctors would take some of her spinal fluid and inject chemotherapy under general anaesthetic), monthly bone marrow aspirates, 20 X-rays, 15 ultrasounds, 9 CT scans, 8 ECGs, 6 MRIs, 2 rounds of immunotherapy, daily steroids, and countless other medications.

On the day after Poppy’s 1st birthday, 56 days after the transplant, it was revealed that she had relapsed. The doctors said they had never seen leukemia return so quickly after bone marrow transplant and there was nothing more they could do, giving Poppy only days to weeks to live.

What happened next

Carly and Tresne put the call out on social media asking if anyone had experienced success with any other leukemia treatments. Poppy was a vibrant, dancing, laughing one year old who was developing new skills daily. They felt it was cruel and unjust to give up without researching other possibilities.

The response was overwhelmingly positive, with parents, doctors, nurses and researchers from around the world getting in touch. CAR-T cell therapy was suggested on several occasions, an approach that would involve collecting Poppy’s T cells and genetically modifying them so they could recognise leukemia in her body and fight it. This became the goal for Poppy.

In the meantime, the results from the ZERO team showed that Poppy’s leukemia was sensitive to Venetoclax, a brand-new trial drug which her doctors arranged access to on compassionate grounds. The drug proved very helpful at keeping her leukaemia under control without any painful side effects, and was used on and off throughout her relapse treatment.

Over the next 8 months, Poppy’s leukaemia would temporarily come under control only to return again. Unfortunately, her T cells never grew to a level high enough to make her a good candidate for CAR-T therapy.

Poppy spent the last weeks of her life reading ‘Hey Duggee’ books, bopping along with her favourite Christmas toys, and laughing at silly things her Mums did to keep her mind off any pain she might be feeling. True to form, she fought hard until the very end, passing away at 4:20am on 16 February 2023.

What you can do

In her 20 short months of life, Poppy inspired many people to face their challenges with renewed vigour and enthusiasm. She will live on through our collective positive actions, and that is why Carly and Tresne are passionately encouraging others to donate blood in her honour.

Poppy’s parents have also begun fundraising to support Children’s Cancer Institute’s research into infant leukaemia.

Work in our Molecular Oncology Group is aimed at finding new, targeted therapies for children with this disease – drugs capable of targeting and killing cancer cells in the body, with little effect on non-cancer cells.

We test these drugs in cells derived from children with the same subtype of leukaemia that Poppy had (MLL-r leukaemia). Once promising drugs have been identified, we then look at how they are killing the leukaemia cells, to learn about weaknesses in these cells that can be exploited.