Matthew's Room

Diary1st - 31st October 1999

  Sunday, 31st October 1999    T +54Photo Album
We went to Avů's house for lunch today, where we made a Jack-O-Lantern for Halloween. We also dropped in to see Pop and then I was allowed a quick visit to the shops to buy a chocolate Yowie, today's favourite food. While there, I had a look at the Christmas display as there were not many people around. I was very excited.
  Friday, 29th October 1999    T +52
This morning I had a blood test at clinic, my white cells and neutrophils were both up, but I needed a platelet transfusion and will probably need a haemoglobin transfusion on Monday. On my way out, I bumped into nurse Jo, I hadn't seen her for a while. 
  Tuesday, 26th October 1999    T +49Photo Album
I went to the park today and had a KFC picnic. I had to stay all covered up, sit in the shade and under and umbrella, but the fresh air was nice. I later played at home in the cubby with my playdough.
  Monday, 25th October 1999    T +48
Today I went to clinic for my blood tests. My counts were still hovering around the same levels and my platelets were down as expected, so I had a platelet transfusion. They also did a special blood test to determine if it is the donor bone marrow or my original bone marrow, that is producing my blood now. We should know the results next week. I had a lovely play in the cubby house today with Kayla and Pop.
  Sunday, 24th October 1999    T +47
Today was a wet day at home, and I wanted to bake some cookies. My favourites at the moment are Anzac cookies. After baking them, with Mummy and Kayla's help, I ate some yum, yum. 
  Saturday, 23rd October 1999    T +46
I went to hospital for a blood test to check my platelet level, but because clinic is closed on the weekends I had to go to casualty instead. My platelet level was OK so I didn't need to have a transfusion and could go home. In the afternoon we all went to Pop's house and then went to Avů's house for dinner.
  Friday, 22nd October 1999    T +45
Today was the first day that I haven't had to go to the hospital in a very long time.
  Thursday, 21st October 1999    T +44
After a good sleep in my bed, I went to clinic for a blood test and my counts were up. I still needed a platelet transfusion though, so I went home and returned in the afternoon. I have to go back in on Saturday for another blood test and maybe more platelets.
  Wednesday, 20th October 1999    T +43Photo Album
DISCHARGE DAY!!!! Yes, today I was discharged from hospital, although I couldn't come straight home as I had to have chicken nuggets downstairs in the dining room. I just didn't want to leave the hospital, but I will be back tomorrow anyway for a blood test and platelet transfusion at clinic. I have a total of 28 medications throughout the day and I have the nasal gastric feeds overnight, to help me catch up the weight that I have lost. I am actually sleeping in my own bed tonight, YAY!!!.
  Tuesday, 19th October 1999    T +42
No gate pass today. I had an ultrasound and abdominal x-ray to try and work out what the cause of the abdominal cramps I've been having for a while are. The preliminary results didn't show up anything major and the thought is that it is just my gastro-intestinal tract recovering from the radiation and chemo. I needed a platelet transfusion this morning. We all went to dinner at the Bear Brasserie, a restaurant at the hospital.
  Monday, 18th October 1999    T +41
Over the last couple of days my white cells and neutrophils have dropped as expected, the white cells are now 1.4 and the neutrophils are 1.2, but it is hoped that they will come back up on their own, if they don't then I will start back on the GCSF. No blood transfusions were needed today. The GVHD rash is fading slightly. While home on a gate pass I was eating very well, lots of roast pork, carrots and gravy.
  Saturday, 16th October 1999    T +39
I have still been having stomach cramps regularly which the pain only goes away with a dose of morphine. The doctors aren't sure where they are coming from yet and are doing some more tests to investigate. I have been getting out each day on a gate pass, but by the time I get back to the hospital in the evening I am usually exhausted from playing at home and go off to sleep soon afterwards.
  Friday, 15th October 1999    T +38
The GCSF needle that I have been having each night has now stopped, it has been helping to stimulate the neutrophil growth. So over the next few days we should see the white cell count probably drop a little bit and then take back off on their own, they were still 2.9 and the neutrophils were 1.8. The TPN, the intravenous nutrition, has also been stopped. However, because I am not drinking as much fluid as I was getting via my central line, I actually lost some weight since yesterday. Until I am drinking and eating enough, the nasal gastric feeds have started up again overnight.
  Thursday, 14th October 1999    T +37
I didn't need any blood transfusions today, my white cells were up to 2.8 and my neutrophils were 1.6. While I was home on a gate pass, I had a good nap in my own bed. My appetite is good, I have been eating scrambled eggs as well as Tiny Freddos (chocolates).
  Tuesday, 12th October 1999    T +35Photo Album
My white cells were 2.5 and neutrophils 1.2 this morning, but I needed platelets before being allowed out on a gate pass. I was walking a bit better today but it is still hard work and very tiring. I no longer need antibiotics and my acyclovir, to control shingles, has been changed to an oral dose so now I have only 3 pumps hooked up to me overnight.
  Monday, 11th October 1999    T +34
I got out on another gate pass today, I had fun playing with my new dinosaur Lego and watching the Hi-5 video. I ate lots of peanut butter on toast. When I got back to the hospital I had a haemoglobin transfusion. The GVH rash has gotten worse since yesterday, but we are just keeping an eye on it for the moment.
  Sunday, 10th October 1999    T +33
The white cells continue to grow, up to 1.5 today with 0.6 neutrophils. The rash doesn't appear to have gotten any worse over night, but I have started back on some steroids to keep it under control. Today I was allowed out for 6 hours, but I didn't feel like walking as my legs were sore, but I still had lots of fun being at home.
  Saturday, 9th October 1999    T +32
My white cells are moving faster now they are 0.9 and my neutrophils are 0.3. Hooray, because my counts are up and I haven't had a high temperature for quite some time now, I was allowed out on a gate pass for 2 hours. It was good to get home for a little while, I walked around the house exploring, checking everything out. It was the first time that I had really walked in over a month, I was a little unsteady on my feet. When I got back to hospital I had some stomach pains. I have also developed a skin rash, which is usually  the first sign of GVH, Graft-Versus-Host disease. Ideally, you want a little bit of GVH, as it kills off any remaining leukaemia cells, but you don't want too much as it can cause serious complications. It will be monitored closely from now on.
  Friday, 8th October 1999    T +31Photo Album
The white cells were up to 0.8 this morning. I am still having platelets each day, to keep my platelet level high, to try and stop the blood in my urine, which has almost gone away. I am feeling a bit brighter again, and my appetite continues to improve.
  Wednesday, 6th October 1999    T +29Photo Album
The nasal gastric feed was stopped today because I have started eating enough again. The potassium infusion has also been stopped, so this means that I am down from 8 pumps to 6. I was feeling a lot brighter and happier today, I had lots of fun this afternoon with Nurse Jo looking after me.
  Tuesday, 5th October 1999    T +28
My white cells were up again, 0.7 this morning and the neutrophils were 0.2. I have got my taste for KFC gravy on toast again, I also grazed on lots of different foods all day long.
  Monday, 4th October 1999    T +27 *** Public Holiday ***
As the pain is settling, the morphine has been turned down again. The white cells remain at 0.6, and I am still having platelets each day. My appetite continues to grow, my favourites at the moment are stir fry beef as well as double-double butter popcorn. I had fun today doing some painting.
  Saturday, 2nd October 1999    T +25
The blood is still there in my urine, but not as much as yesterday. I am still having platelets twice a day though. My white cells were up to 0.6 this morning. The cramps haven't gone away yet. I have been eating a bit better, still not very much, but at least I have some appetite.
  Friday, 1st October 1999    T +24
The white cells were back up to 0.5 again and the neutrophils still at 0.1. Some blood has appeared in my urine, the doctors aren't sure of the cause yet, so I have started having platelets twice a day to keep my platelet level over 50 as well as starting on double maintenance fluids to flush out my system.


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