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31st December 2001 my rash has come back under my arms and in in my groin and my belly button, dont know what this means.
Going back to Brisbane on the 7th January 2002 for a check up,know more about the rash then.
Thursday 3rd January 2002 had blood tests they couldn't get enough blood for my liver enzymes test or cholestrol. My full blood count came back fine a mild anaemia, mildly microcytic red cells.WBC 9.6.
7th January 2002 had blood test done out of my Mr Bump (Port)they left me needled for the night.8th January 2002 I had my Chemo and now have prednislone for 5 days straight. I got a high temp tonight and my Mr Bump was swollen and looked like it had flipped over. But the swelling went down the next day and my temp was back to normal.A couple of days later my Mr Bump looks different again.
Got email from a family in Australia with more names finally we can find out about others in Australia. Thanks to Histio America.
21st January 2002 back for check up my blood work is fine my iron is coming back up my cholestrol is 7.6. Mr Bump is loose and I'm going back in two weeks for another cat scan and back under to get my Porta Cath re stitched and I'm also getting a nose tube to be fed by as I'm still only 8kgs and have not put on any weight in 3 months.They are going to teach mum what to do with my nose tube, how to feed me.
5th February 2002.We went back to Brisbane hospital for more treatment. I went under anesthetic for a CT scan(Diagnostic x-ray using a computer to produce a series of images of a body segment) one day and the next I had to go under again to have my damaged Porta Cath (Venous acess device fully implanted under the skin) replaced. I am black and blue from this last procedure around my neck and top of chest. This visit I also had permanent nose tube(Nasogastric Tube) inserted so Mum can give me formula (Karicare Follow on 150mls, 3 times daily)which is gravity fed. I need to put on weight as my weight has become a concern. I am only 8.5kgs which is not good for a 14month old.
The results of the CT Scan showed there is no change to my liver. They gave me my dose of chemo and we returned home to Inverell and will be going back in a month.
Four weeks since having my nose tube in, I have put on half a kilo(great).
13th March 2002.Still no change. Started on a new course of chemo today VP16, Vinblastine weekly for 5 weeks. Had another CT scan. No results to date yet.My Pop had his head shaved for "Shave for a Cure" (Leukaemia Foundation) He raised $1,010.00 in 2 days.
I have had 3 weekly chemo treatments. I'm still very happy and not sleeping very much. I needed my nose tube replaced as I vomited it up (all over Mum).
Today the 18th April 2002 I had my last weekly treatment in this protocol, my needle had come out of my port a little bit and they are not sure whether I recieved all my chemo, as my shirt was wet and my pram. I had a temp nearly all the next day and wasn't feeling very well, so I just had water down my nose tube instead of my formula. On Wednesday we are going back to the hospital to talk about the oral chemo I'm having. On the 2nd May I have CT Scan we hope things have changed.
The Caloundra Bowls Club is holding a Fundraiser for me. Everybody has been really wonderful donating things and helping organise "Williams Day". We also have a few gentlemen having there heads shaved.
I am now on Mercaptopurine tablets (chemo)6 days a week for 24 weeks plus the Vinblatine and VP16 every 3 weeks.
We had a great day on Williams Day and everybody had lots of fun. The heating vent we put in is great, really heats William's room up as the tempreture have got down to -11 very very cold and frosty. Well he is still not eating and we have increased William's nose tube feed to 510ml at night and three feeds of 250ml through the day.And we go through nearly a tin of formula in two days getting very expensive. He is 10.3 kilos.