Noah's Brain Tumour Battle

Thank you to everyone who has contributed so far and been on this journey with us. The previous GoFundMe reached our goal, but we have decided to keep donations open as no amount of money will ever be enough to give Noah a chance to fight this awful disease. Your generous support has made a huge difference. The amount raised so far has contributed towards living expenses, relocating to Randwick to be closer to the hospital as well as medical costs, medication and Allied Health therapies not covered by Medicare for Noah.

At just sixteen months old, our little Noah was diagnosed with an extremely rare and aggressive brain tumour - Pineoblastoma. Since being admitted to Sydney Children's Hospital, Randwick earlier this year, Noah has undergone five brain surgeries, insertion of a double lumen hickman line and five rounds of high-dose chemotherapy. Sadly due to the location and complexity of the tumour, unfortunately only a partial portion could be removed as it is surrounded by important structures and big veins.

Noah has handled the chemotherapy like a champ and still smiling along the way. He lost all his hair, eyelashes and eyebrows pretty quickly into the first round, and is still on a feeding tube as he has lost his appetite. The first four rounds of chemo were brutal for little Noah. Receiving highly toxic drugs through an IV for eight days made him vomit multiple times a day and very lethargic. Sadly the first round had to be cut short as we had an emergency situation with Noah's shunt incision site leaking CSF fluid which resulted in emergency brain surgery the following morning. Turns out his VP shunt has fractured in his brain.

We were fortunate enough to have a successful outcome when Noah's stem cells were harvested during the first round of chemo. These are now being transferred back to Noah for the final three rounds of chemo. Without these, he simply wouldn't survive as this even higher dose of chemo absolutely wipes everything out and the bone marrow can't recover.

At the end of Chemo, Noah has been recommended to have six weeks of radiotherapy, which comes with the risk of damaging healthy brain tissue, with potentially long-term effects on Noah's cognitive learning behaviour. We are currently investigating what options are available overseas as the type of radiotherapy Noah's needs (Proton Beam Therapy) will not be available until 2025 when it comes to Adelaide.

As you can imagine, this diagnosis has taken a huge toll on our previously well family. I've taken extended leave from work, and my husband has reduced his hours to help care for our precious son. The financial burden on us is immense, both short and long term. Our days are filled being at Noah's bedside ready and waiting to catch a vomit and trying to function on minimal sleep with little food or privacy as we regularly share a room with three other families (Private Health doesn't get you anywhere). We've developed a high tolerance to noise and beeping alarms while trying to understand medial jargon and make decisions with doctors, nurses and specialists while advocating for our son.

We don't know what is in store from one day to the next, but living opposite the hospital has its benefits. While it is a little noisy with the helicopters and paramedic sirens, it is one of the best decisions we made as we need to be in ED within the hour and on antibiotics if Noah has a temperature over 38 degrees. The overnight bag is always packed and ready to go.

Your generous contributions can help make a lasting impact and the donations will help us with ongoing medical costs, as well as day-to-day living expenses. Please consider sharing Noah's story with your network and consider making a donation, no matter how big or small, as every little bit counts.

Thank you so much from the bottom of our hearts.

Laura, Cheyne & Noah.