This is Jack…or Jack Jack as he’s known to his family and friends.
In April of 2023, he was like any other curious boundary-pushing three-year-old. He wanted to be a dolphin when he grew up. He was happiest when playing with his brother Ted, making cups of tea in his kitchen and watching old-school Scooby Doo and Smurfs. His favourite colour was yellow. Then he came home with a limp.
Three weeks later, four doctors walked into our room to advise us our baby bear had stage IV cancer. Neuroblastoma.
Whilst Jack had been playing, swimming, sleeping, laughing and giving “huggles” his nerve cells had failed to mature properly, resulting in a mandarin-sized tumour growing near his adrenal gland and kidney. From there, it spread to lymph nodes, bone marrow and his bones, from the top of his beautiful head down to his toes.
In May 2023 he commenced one of the most gruelling treatment protocols a child can endure: six months in hospital, eight rounds of chemotherapy, an 8-hour surgery, a bone marrow transplant, and 12 rounds of radiation. He has suffered horrible side effects through neuropathy, loss of fine motor skills, reduced eyesight and he will be infertile. Yet he still walks into hospital jauntily singing his favourite song: "don’t give up, don’t give in, just get up and try again".
He has responded very well to treatment. It has cleared all but a few remaining cancerous cells in his bone marrow. His next and final stage of treatment in Australia, immunotherapy, is scheduled to go for nearly six months with the objective of clearing the remaining cells.
Despite this success, the hard truth is that Neuroblastoma has a 50% relapse rate. And if Jack relapses, his chances of survival plummet to just 5%.
The good news: there are two amazing drugs (DFMO, which is FDA approved and a bivalent vaccine) available in America that have been proven reduce the risk of relapse by 25%. Both represent the standard of care given to US children.
The bad news: Australia won’t be bringing these drugs into the country for at least two years! Until then, Jack (and other Neuroblastoma children in this country) have a 50:50 chance of relapsing and dying…all because of a timing difference.
This is not a risk we are willing to take, and so we are asking for your help please.
We need to raise $500,000 to get Jack access to at least one of these drugs and increase his chances of survival. He will be required to take these drugs for two years and we will need to visit the US at least six times. He needs to start the American drug regimen within one week of completing immunotherapy. We expect this to be mid-August 2024.
So many people have generously asked how they can help us. This is how. Every single dollar donated gets Jack closer to the drugs he needs, so thank you in advance for anything you are able to give.
Your generosity will be used to cover the cost of medication and other hospital requirements (e.g. scans, bone marrow aspirations) as well as flights to the US and accommodation whilst we are there.
This isn’t “Just for Jack” you’re helping children throughout the world who will benefit from the data collected from his participation in a trial that provide further and vital data to our Doctors. Importantly, you’re also helping build the case to bring the drugs so desperately needed here to Australia.
They say it takes a village to raise a child. Thank you for being part of Jack Jack’s village. We can’t do this without you.
About Neuroblastoma and Childhood Cancer
- In Australia Neuroblastoma represents the fifth highest incidence of childhood cancer in the G20
- Every year in Australia, 40 children are diagnosed with Neuroblastoma
- Almost all cases of neuroblastoma happen in infants and children younger than 5 years old. Despite this, treatments are sourced from adult protocols, regardless of the vast differences in paediatric cancer and paediatric care
- Childhood cancer receives just 8% of funding from total cancer spend!
About DFMO and the Bivalent Vaccine
- On 13 December 2023, the Federal Drug Agency (FDA) approved DFMO to treat neuroblastoma. It is trademarked under the name IWILFIN, representing two boys, Will and Finn, who survived as a result of DFMO. The leading Doctor, Dr Scholler, operates from Penn State University Hospital. The treatment involves the child taking tablets daily for two years.
- Memorial Sloan Kettering (MSK) is touted as the leading global hospital for Neuroblastoma. They offer a bivalent vaccine. All children under MSK care are offered the vaccine at an appropriate stage of their treatment journey. The vaccine is given 6/7 times over two years.