DATE OF BIRTH: November 29th, 2003

 ILLNESS:  Stage IV Neuroblastoma

Thank You Message.

Josh received his quilt yesterday and I can't tell you how happy it has made him!!! He felt so special to have received a parcel and that so many people have spent time making something so beautiful! He hasn't let it out of his sight yet and of course slept with it cuddled to his heart all night!!! I must admit that seeing the beautiful quilt and knowing that all those lovely ladies from all over the world were hoping for Josh to have a longer and better life brought quite a few tears to my eyes.

We are currently investigating being able to send Josh to the USA to participate in clinical trials to hopefully cure the neuroblastoma but it is very early days yet. We don't know much about it or how successful it may be or if Josh is even eligible but we have to hope. We also hope we are able to raise the 1/2 million dollars it would take just to enrol Josh in the study if he does get accepted. It sounds impossible now but we HAVE to do it if it gives him a chance.

Once again, thank you all so very much, you have made all of us and especially Josh VERY HAPPY! Whatever the outcome of our research, Josh will be kept comforted by his beautiful (green) quilt!

All my very best wishes,

Hannah

BIOGRAPHY

Josh had a normal birth, although he was posterior and happy early life though he did suffer terribly with Gastro Oesophagal Reflux Disease and slept very poorly.

At the age of 3yrs I noticed a change in his personality and his skin got very pale. Trips to the doctors, dietician and Occupational Therapist did not show up anything and life went on with plenty of tantrums and outbursts along the way. When he was asked how he was, he always said the same thing “I don’t feel good, I am sick”

At around 3 1/2 yrs old in early April, Josh caught a flu bug but we were very concerned as he was off his food and complained of nausea and disorientation. Trips to the hospital and doctors over several weeks did not present any answers other than that the virus was taking a long time to clear. Josh began to get back pain which became progressively worse.

Finally on 10th May I had had enough and took him back to the doctors, pointing out the lumps on his lymph nodes that were getting bigger by the day and new ones coming up on the back of his head. Josh was in agony and not even able to get out of bed due to the severe back pain.

The next day we were told to head up to the children's hospital in Perth as it was possible Josh had leukemia. We knew it was not that but feared it was much worse. We were right.

Within three days Josh was scanned, had a central line into his heart put in for chemo and we were told he had less than 30% chance he would live. There was a massive tumour 3/4 of the size of his abdomen, his bones were almost all riddled with cancer and his bone marrow was 99% Neuroblastoma cells. He had a couple of weeks to live without treatment so we embarked on six rounds of horrific high dose chemotherapy, surgery to his primary tumour, mega dose chemotherapy and stem cell rescue, 3wks of radiation treatment and six months of drug therapy.

Josh has suffered line infections, 5 months of Rota virus, chlostridium gastro, massive ear infections that have destroyed the eardrum and bones in his left ear which require surgery to replace and has been left permanently deaf from the chemotherapy in the other ear.

Today Josh is a happy 4 1/2 yr old who has just made it through one year since diagnosis, he is no longer tube fed, his hair has grown back thick and curly and he is almost finished his six months of meds. He rides his bike, is looking forward to going to kindy for the first time in July and is hoping, praying and dreaming every day that the dreaded cancer does not come back.