Update from Jack's Family - June 27th, 2024
This is Jack…or “Jack Jack” as he’s known to his family and friends…and “Bear” as he’s known to us - his Mum (Jaimee), Dad (Trent) and big brother (Ted).
Right now, our baby Bear is in his fight for a lifetime, and he - we - need your help.
In April of 2023, Jack was like any other curious boundary-pushing three-year-old. He wanted to be a dolphin when he grew up. He was happiest 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 his lymph nodes, bone marrow and his bones, from the top of his beautiful head down to his toes.
Treatment
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, 12 rounds of radiation, and immunotherapy. He has suffered horrible side effects through neuropathy, loss of fine motor skills, and reduced eyesight and he will be infertile. Yet he still walks into the hospital jauntily singing his favourite tunes: "Don’t give up, don’t give in, just get up and try again" or “Everything's better when we’re together” from the Lego movie.
Initially, Jack responded very well to treatment. It cleared all but a few remaining cancerous cells in his bone marrow.
However, the hard truth is that Neuroblastoma has a 50% relapse rate and the chances of survival plummet to 5% on relapse.
Heartbreakingly, in May 2024, a year after he started treatment, Jack relapsed two rounds into immunotherapy. He has four new bone lesions. As a result, he is now undergoing a combination of at least 5 rounds of chemotherapy and immunotherapy with the objective of achieving remission once more.
Fundraising
As a family, we commenced fundraising in February 2024 (prior to Jack’s relapse) with the objective of getting him access to one of two drugs (DFMO or a bivalent vaccine) available in America, proven to reduce relapse by 25%. Our target was based on the cost of the vaccine option plus the necessary travel for Jack and one carer which was $500,000.
It was a frighteningly high number, but thanks to the incredible support from our community far and wide, we had nearly hit this original target of half a million dollars.
…But then Jack tragically relapsed and now we desperately need to get Jack access to Car T Cell Therapy, in Rome.
Car T Cell Therapy involves extracting Jack’s stem cells, re-engineering them and re-inserting them back into his precious body. From there, they know to go and fight the cancer. It is the future of cancer treatment.
The good news: The Bambino Gesu Paediatric Hospital in Rome, Italy are world leaders in Car T Cell Therapy for Neuroblastoma. They have a proven success rate of 82% in treating relapsed Neuroblastoma!
The pioneering team at this hospital has assessed Jack and believe he could benefit from this treatment, They are awaiting his latest scan results due July 2024 to determine the next steps.
The bad news: Australia does not have a facility to perform Car T Cell Therapy for Neuroblastoma, nor will the Government budget extend to supporting overseas travel for children in this circumstance. So we are once again asking for your help please.
The Car T Cell Therapy treatment alone costs $550,000. That’s $50,000 more than our original fundraising target. In addition, we will need to travel to Italy at least four times over two years. The first stay - will need to be for three months, with subsequent visit durations dependent on Jack’s response to the treatment. We hope to commence this treatment by the end of 2024.
And so, we have a new fundraising target of $700,000.
It's an overwhelming amount of money, but with an 82% success rate, it will be worth every single dollar if it saves Jack's life.
We are so incredibly grateful for all the support we have received. Every single dollar donated gets Jack closer to the treatment he needs, so thank you in advance for anything you are able to give.
This fight for a lifetime isn’t just for Jack. By donating, you’re helping children throughout the world benefit from the data collected from his participation in a trial that provides further and vital information to our Doctors. Importantly, you’re also helping build the case to bring Car T Cell therapy here to Australia
They say it takes a village to raise a child. Thank you for getting ‘Behind the Bear’ and being part of Jack Jack’s village as he fights for a lifetime. We can’t do this without you.
