Treatment 02 -03

Well my Mum and Dad are really pleased I put on 1kg in three weeks, since then we are now on Pedia Sure Formula plus Poly Joule. Also in the last month I only had four teeth now they are all coming through at once. The only thing I have to do is learn to eat{Ha Ha}. I have my next CT scan on The 15th August 2002 so we will then know what protocol we then go on next, just hope there is some good news. Im flying by plane so it will be interesting as I have never been on a plane. 20th August back at home had a great trip on the plane to Brisbane, we have't got our CT scan results back yet, so we hope it will be good news.Going back to Brisbane on the 5th September it has been a very long wait 3 weeks for my results we can't wait.No change in nearly 12 months so it looks like we will be having a bone marrow transplant but before this we are going to have all the tests that I had to start with along with some agressive chemo My Doctor Helen will fill us in with more soon. We met Shayley Hackenberg and her family in Sydney on the weekend it was great to meet them, those that don't know Shayley she has Histio but hasn't had chemo since Oct 2001. So I now have another very special histio friend.

October 2002 we again had our trip to the Royal Childrens Hospital for a lot of tests, ct scans,bones scans,Bone marrow tests, and a liver biospy plus X rays and Ultrasounds.We also saw a Liver Dr and a Kidney Dr.my kidneys seem fine but I now have exstensive liver damage which is called Primary Sclerosing Cholangitis another very rare disease. (similiar to a Scolerois of the liver but not caused by alchol) We have to wait for my liver to deteriate for a liver transplant, it maybe 6 months or even two years they have no way to determine. But the Histio is at the moment dormant they can not find any active cells. The good news is I have no more Chemo just trips to Brisbane every six weeks to do blood tests, flush my Port out and do an ultrasound, and see my Liver Dr Loui Ee. So all we do is play the waiting game and see how my liver goes. Some more good news I have a new cousin Thomas William Dawson he was 8lb 2ozs born the 28th October to his excited Mum (Sarah) and Dad (Paul). We get to see them on the 20th of November when we go for my checkup.I had my nose tube replaced with a stomach peg in January 2003 as I was sill not eating and they thought it might be better for me.Then changed to my button 12 weeks later.

May 2003 aged 2 1/2 just spent the last two weeks having all my tests all over again, as my little body started to show that the Histio had begun to move to my fingers(bruising and peeling) Also I started to drink an extreme amount of fluids, and we found out I know have Diabetes Insipidus(water). (Not the normal diabetes). It is controlled with DDAVP nasal spray for the rest of my life. Go to(www.diabetesinsipidus.org. We are waiting on results of biopsy on my skin, and other tests. While in hospital I got an infection in my blood so had to have intravenous antibiotics. A liver biopsy was done again and the results were that the Histiocytosis is active again. June 2003. I am now on Cyclosporin, Steriods and Ursofalk Suspension. My Liver counts were sky high but since being on the medication the counts have stabilized. The Dr's are still unsure were to go. We take it a day at a time having constant blood tests. Hoping to go home shortly for a break. It is no fun staying in a little room at the Lodge.

The Caloundra Bowls Club where my Pop works has taken me into their hearts once again and ran a raffle. They are so good to us as it is a long haul financilally. We cannot thank them enough.

August 03.  The ladies from William's pathology in Inverell (Robyn and staff ) decided to have a fund raiser for William, we had a great night it was a big success.

Oct.03 We had our tests done again, and so far things are going really good and I'm finally eating, my results gave the Drs a scare but they are happy with me. We are going home for a month, and we are going to have another ultra sound, to see if any changes. My Liver is still no good.

Jan 04. I have a lump on my right side of my head near my temple. We are going back on the 19th January to have an Ultrasound and CT scan. I hope it is just a bump not a new lesion. Mum is a little worried as it has just appeared and it hasn't gone down. Hannah ,Riley and Dad are coing this time and we are going to go and see the Australia Zoo. Every one says how good I  look . Cross your fingers for me. The airconditioners we put in have been great with this weather  in the late 30's for the past month. 

William dressed as an Indian