Matt's been researching cancer for years. Then he recognised the symptoms in his toddler.

A phone call from your child’s day-care rarely equates to good news, however, we never envisioned that the result of this call seven months ago would turn our entire world upside down.

Earlier on that day we had gone through our normal morning routine before I dropped my two-year-old daughter Josephine (Josie) off and headed to work. Just before lunch, I received ‘that dreaded call’ from the staff at Josie’s day-care stating that she was being uncharacteristically clumsy. I immediately left work to pick her up and dropped in on my wife Phoebe, a general practitioner on our way home. Phoebe checked her over with nothing being overly obvious, so I took her home.

Once at home, I noticed Josie crashing into the walls as she walked down the hallway towards her room. This concerned me a little, but I just put it down to her being overly tired and laid her down for a nap. After Josie woke from her nap she seemed more like her usual self.  

However, the next morning whilst at work, I received a call from Phoebe saying that she was concerned for Josie as she was refusing to walk and had begun losing control of her right limbs. My heart immediately sank and we rushed her to the Emergency Department. I immediately left work and rendezvoused at the Paediatric Emergence Department of the John Hunter Hospital. The concern of my wife and her father, also a general practitioner, was obvious, and it didn’t take long until I shared their concern.

That afternoon after an emergency MRI was ordered, it revealed our sweet little girl, so innocent and full of life was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a highly aggressive brain tumour with the average survival rate of just 10 months from diagnosis.

I am a cancer researcher and Phoebe a GP, so we both knew the devastating affect the brain tumour would have on Josie. There is currently no cure for DIPG, given the inoperable location of the tumour in the brain stem and no drugs have been identified, as yet, to affectively treat this cancer.

Josie has experienced pain that no child should ever experience. She has already undergone 36 general anaesthetics, 30 doses of radiation therapy to her brainstem, four surgeries and numerous other intrusions to her precious little body.

Since being diagnosed, Josie has been enrolled in the Zero Childhood Cancer personalised medicine program that is led by the Children’s Cancer Institute in partnership with Sydney Children’s Hospital. Through the Zero Childhood Cancer clinical trial they have been able to identify the genetic changes that seem to be driving Josie’s individual cancer and a targeted therapy has been identified that Josie currently appears to be responding to. Whilst this gives us some hope it’s very early days and much more research is required.

I knew I needed to take matters into my own hands. I could not just sit by and watch my little girl fight this without putting everything I knew from my cancer research background towards helping find a cure for DIPG. Since Josie’s diagnosis, I have commenced study into the biology of DIPG, researching new therapies for children with DIPG, whilst also maintaining my research focused on paediatric and adult Leukaemias.

In a collaborative research project between Associate Professor David Ziegler at the Children’s Cancer Institute my work at the Hunter Medical Research Institute, we are testing a new drug that has the potential for use in DIPG children in the near future.

Our research has targeted at one of the pathways that drive DIPG growth, with preliminary data showing that this may be an effective strategy for halting or slowing the growth of these tumours. The drug is able to get to the region of the brain where DIPG grows which has notoriously been difficult to do, and we are hoping that at least the drug alone can reduce the progression of the cancer. There is an obvious and vital need to identify how we kills these cells, but in the interim our research may buy us some time.

However, the biggest barrier to us advancing our research and finding a cure for all children with DIPG is funding. The Children’s Cancer Institute recently announced that $100,000 from their ‘Build for a Cure’ campaign will be directed to our collaborative DIPG research project. This is a perfect example of the community coming together to help find a cure for childhood cancer.

‘Build for a Cure’ has seen an entire house in Medowie built and furnished in just 21 days with every single element of the build donated from generous local businesses, organisations and tradespeople. All proceeds of the auction, which will be held on the 21st of October, will go towards research seeking to end childhood cancer.

Whilst we have a long way to go, there is hope. Leukaemia was once a death sentence for children, but thanks to research, survival rates are now as high as 85 per cent.

We may not find a cure in time for Josie, but we may buy her some time. Our current research will help children in the future fighting DIPG, and this will be my life long inspiration. Whilst it breaks my heart knowing that a cure may be out of reach for my sweet Josie every extra day, extra birthday or Christmas with her is priceless.

Whatever happens for Josie in the future I will continue to do everything I possibly can to ensure that one day no child and no parent is forced to endure what we have. 

You can support The Children's Cancer Institute's 'Build for a Cure' on their website.