How William was diagnosed

August 2001 my Dad noticed a lump that appeared on my upper left thigh whilst I was in the bath. It had seemed to appear out of no where. We went to the Local GP. the next day. I was booked in for an ultrasound 3 days later. The results were a heamotoma they said. So I was to have another ultrasound in 2 weeks. The lump had not changed, if any thing it was a little bigger, results still showed a heamotoma. Told to wait 1 month before seeing a specialist to have it removed. Mum was not happy with me as I had skin lesions under my arms and my groin. My navel was also not healing. No matter what creams mum tried, and many she did try with the chemists help. None seemed to work. When mum took me to the Dr to make the appointment for the specialist she made mention that maybe I had something wrong with my blood clotting and that I did not appear to be thriving like my siblings had at that age, so he suggested a full blood test.

Results of blood test.

Extremly abnormal results of the liver enzymes.
White blood cell count abnormal.
High cholestrol.

I was admitted to Royal Brisbane Children's Hospital the 31st of October. (The next day.) We had to travel 450ks to Brisbane Queensland. So the whole family hurridly packed and left notifying my Grandparents to meet us at Brisbane to look after Hannah and Riley at their home in Caloundra 90ks away from Brisbane. The tests started.* Chest and leg xrays.* Blood tests. * Ultrasound on liver and lump on leg. This was interesting as I would not lay still untill Mum breast fed me as I lay on the table and I fell asleep allowing the results to be read easier.
( Doctor said that breast feeding was the best sedative for a good xray result.)Next was a MRI. Then transfered to the Oncology (cancer) Unit.
More tests needed. Suggested to Mum and Dad that the lump was a cancerous tumour.
More blood tests and a biopsy on the lump in my leg and one under my arm on the lesions that are there. The next day there was a catheter inserted into my hand so a dye could be injected for a bone xray. I went to sleep for these xrays which was lucky as each picture took 10 minutes and I had to be extremly still the procedure took an hour. Later that day I had a nose tube inserted where the medicine "contrast" would be inserted into the tube for a CT scan and bone marrow test. The next day (Friday) I had an Xray on the pelvis.

We are given the long awaited news of a diagnosis. A severe case of Histiocytosis.I have it in my Stomach, Liver, Lungs,Skin,Leg and ears. We now have a name but what is it? We are told it is very rare. Where do we find information on this disease? The internet became the tool for our knowledge.

We are given a weekend passout so we go to my grandparents house in Caloundra where my siblings have been staying. Back to outpatients on Monday for a porta cath to be inserted 3rd time under anesthetic. This to start my treatment of chemo, Vinblastine, weekly for 6 weeks then monthly. Prednisone (steriods) orally twice daily.

Had a another CT scan and it showed no new lumps in Liver and Lungs which is good news. The lump in my leg which had grown to 7.5cm x 2.5cms has gone in just over a week after the biopsy.

26th December 2001 My treatment has been going now for 6 weeks with no complications to date. My hair has started to thin out, not that I had much. I have put on 1 kg in weight which is good. I am still breast fed and only eat a very little amount of solids. My iron level has dropped so I am now on an iron supplement 4ml twice daily(which I hate). It will take 2 months to get back to normal.
We came home for Christmas and will go back to Brisbane on the 7th for a check up and hopefully I will be on monthly chemo with 5 straight days of steriods.