At just sixteen months old, my sweet Noah was diagnosed with an incredibly rare and aggressive brain tumour—Pineoblastoma.
Earlier in 2023, we were admitted to Sydney Children’s Hospital, Randwick, where Noah has undergone six brain surgeries, the insertion of a double lumen Hickman line, port-a-cath, close to ten rounds of high-dose chemotherapy and 40 sessions of radiotherapy. Unfortunately, due to the tumour’s location and the complexity of surrounding vital structures and large veins, only a portion of the tumour could be safely removed during surgery. Noah has shown such incredible strength throughout this journey, and I can hardly put into words the extent of what his little body has had to endure. Each step of the way has been heart-wrenching, but Noah has been nothing short of a champ.
As you can imagine, this diagnosis has taken a significant emotional, physical, and financial toll on our family. The emotional and financial toll of this diagnosis has been enormous. In addition to navigating the complexity of Noah’s care, my husband and I are also in the midst of going through a divorce. I’ve been unable to work for the last two years as I’m primary carer for Noah. My days revolve around Noah’s care at his bedside and managing constant challenges with his medical issues.
Noah began a new form of chemotherapy, the MEMMET protocol, which involved a combination of targeted drugs. This included oral chemotherapy tablets that he took at home, along with chemo injected directly into his brain to get as close as possible to the source of the tumours. He also started an IV drug aimed at limiting the tumour’s energy source. Thankfully, Noah tolerated this new protocol relatively well, with no hospital admissions. There were even signs of improvement in his cerebrospinal fluid (CSF) studies, though towards the end of October 2024, some tumour cells were still detected in his CSF.
Unfortunately, an MRI in early November 2024 revealed devastating news—the disease had spread further in both his brain and spine. It’s been incredibly difficult to accept.
Following this, we changed our plans and moved forward with a new round of chemotherapy, using a different combination of oral and IV drugs, along with radiation therapy. However, this treatment combination hasn’t had the desired effect either, and we’ve seen further disease progression in Noah’s brain and spine.
Given the circumstances, we are now receiving support from the Palliative Care team at the hospital. Their focus is on symptom control, maximizing Noah’s quality of life, and minimizing hospital admissions. The truth is, Noah’s cancer is no longer curable, and the best we can do now is to ensure he is as comfortable as possible.
He is now very wobbly on his feet and needs a lot more assistance with walking and moving around generally. He is struggling to see out of his left eye as the tumours in his brain have damaged this nerve. Some of Noah’s favourite things are playing with animals, seeing trucks and construction vehicles in action, superheroes and Bluey. Despite everything, we live by three simple rules each day:
- Embrace joy and avoid unnecessary hardship
- Make sure to have fun every day
- Stay healthy and feel your best
This is a reality that I’ve had to come to terms with—the inevitability of what lies ahead. And with that acceptance comes an overwhelming amount of fear. Fear of pain and suffering, fear of the unknown, fear of making the wrong decision, fear of change, fear of losing control, and above all, the fear of being on this journey without the answers I so desperately wish I had.
Your generous contributions will make a world of difference in easing the financial burden of ongoing medical expenses and everyday living costs. No donation is too small, and every bit helps. We would also be deeply grateful if you could share Noah’s story with your friends, family, and network.
From the bottom of our hearts, we thank you for your support.
With love and gratitude,
Laura and Noah