Wednesday, June 11, 2008

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.

1 comment:

camelle hurley said...

hi it me camelle hurley. im profoundly deaf lady. wondering do your son profoundly deaf? how i found out from woman day book story about him of his life ill. how is ill well? my dream wish he comes down to bundaberg to meet deaf kids tell them about himself im sure kids loves to know about it. i work at school with deaf kids for 8 years. tell him big hello i know he not know me and wish him well. my email at school
take care and looking forward your message
thanks again