Matthew's Room

Diary1st - 30th November 1999

  Tuesday, 30th November 1999
We went to the Variety Club's annual Christmas party at Darling Harbour today. I went on a merry-go-round with Kayla and we both got lots of great presents. It was a fun day. Afterwards we took the tram back to the car at Star City, where we bumped into Nurse Jo.
  Sunday, 28th November 1999Photo Album
We had great fun today at Star City, we got to meet Tia Ana with the rest of the cast of FAME backstage after a great show. Everyone was very friendly. After dinner with AvŰ and Avů, we went and saw the Christmas decorations in the city.
  Friday, 26th November 1999
My counts were all up slightly today, which meant I didn't need a platelet transfusion. I have stopped the steroids that I was taking. I am now down to only weekly clinic visits. When I got home I helped Mummy and Kayla put up the Christmas tree.
  Thursday, 25th November 1999
I was very lonely today, as Kayla had to go to hospital. She had grommets inserted in her ears and her adenoids taken out. She was very brave and luckily she didn't have to stay overnight. Meanwhile I had all my grandparents and Daddy taking turns at looking after me. You would think Mum and Dad would be sick of the sight of hospitals by now, wouldn't you? (Yep, they sure are!!!)
  Monday, 22nd November 1999
Another positive visit to clinic today, with all my counts up again. Pop looked after me while Kayla went to a birthday party, but she did bring me home a lolly bag and helium balloon. Can you all guess what I did with the balloon????
  Sunday, 21st November 1999Photo Album
We went on an adventure to Michelle and David's house, who live on the Central Coast. We got to meet and feed the cows and went on a nature walk around the property. I had such a great time breathing in the fresh air.
  Friday, 19th November 1999
At clinic this morning, my white cells and neutrophils were about the same as Monday, but I needed a platelet transfusion. The results of last week's blood test, to determine which bone marrow is producing my blood, came back today. They test 30 samples, and all 30 samples showed that the blood is from the donor bone marrow, which is great news. This test will be repeated further down the track to make sure things are still OK.
  Monday, 15th November 1999
All my counts were up, even my platelets! Although my weight is down. I am trying lots of foods but only eating very little. My eyebrows and eyelashes are growing back quite dark and my hair is also starting to grow back.
  Sunday, 14th November 1999Photo Album
This morning I went to work with Daddy, I had so much fun I didn't want to leave. Uncle Ed was at our house when I got back and then we went to Avů's house for dinner. 
  Saturday, 13th November 1999
Today we had all the family over for a barbeque dinner. I had fun showing Diddy all my dinosaurs and Avů read me my night-time story.
  Friday, 12th November 1999
My blood test today showed that my haemoglobin is stable but both my white cells and neutrophils had a drop. I also needed platelets today, especially since we noticed some blood in my wee. I had Nurse Jo in clinic again today which made me happy.
  Thursday, 11th November 1999Photo Album
Today was Mummy's birthday. I waited all day so that we could all go out to dinner at a restaurant. We went to Castle Towers for dinner and I had fries and a BIG milkshake. At home we had a birthday cake and I helped Mummy blow out all '24' candles.
  Monday, 8th November 1999    T +62Photo Album
Today's blood test showed that my white cells and neutrophils are still climbing steadily. While I was at hospital, I dropped into Camperdown Ward to say hello to all the nurses. Nurse Jo was there as was Nurse Lisa who just got back from an 8 month holiday. In the afternoon, Sarah and her brother Matthew came over to play, we all had lots of fun riding bikes and playing with cars and dinosaurs.
  Sunday, 7th November 1999    T +61Photo Album
I helped Mummy and Daddy with some gardening today, but I could only work in the shade and had to keep covered up as my skin is still sensitive from the GVHD rash I had.
  Friday, 5th November 1999    T +59Photo Album
I went to clinic this morning, I needed a platelet transfusion, but all my other counts were up. My white cells are now 3.1 and the neutrophils are 2.1. The special blood test I had last week, to determine what percentage of my blood is being produced from the new bone marrow, didn't work so I will have another one on Monday to try again. In the afternoon, Nurse Jo came to my place to visit, we had a great time playing in the cubby house.
  Tuesday, 2nd November 1999    T +56
I had another blood test this morning and my cyclosporin level was back to normal, I don't need to go to clinic until Friday now.
  Monday, 1st November 1999    T +55
I had a blood test a clinic this morning, my haemoglobin and platelets were both still OK, so I didn't need any transfusions. My cyclosporin level, a drug I am taking to keep the GVH at bay, was higher than it should be so the dosage was decreased and I will have to go back in to clinic tomorrow for another blood test.

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Last Updated : Sunday, 03 October 2004

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