Matthew's Room

Diary1st - 30th September 1999

  Thursday, 30th September 1999    T +23
The cramps have intensified, they may be due to constipation but no one is quite sure yet. The neutrophils stayed at 0.1, but the white cells went down to 0.4, I also had a haemoglobin transfusion.
  Wednesday, 29th September 1999    T +22
The neutrophils finally moved, today they were up to 0.1, and the white cells were 0.5. I needed a platelet transfusion today. Overnight I had some painful lower abdominal cramps.
  Tuesday, 28th September 1999    T +21
White cells were back up to 0.4 but the neutrophils haven't moved and are still sitting at <0.05. I got out of bed and walked a little, the first time in over 2 weeks. My temperature has stayed under control for a while now and my appetite continues to improve.
  Monday, 27th September 1999    T +20
My white cells were 0.3 again today. I have been eating some more as my appetite starts to come back. The pain seems to be easing so the morphine has been turned down again which is making me more alert again.
  Saturday, 25th September 1999    T +18Photo Album
No high temperatures again today and last night's blood cultures were clear, so far, of the bugs that showed up earlier in the week. My platelets were down again, so I had another platelet transfusion, but my white cell count was up to 0.4, which is promising. For the first time in quite a while I had something to eat, only a couple of nibbles, but it was a start.
  Friday, 24th September 1999    T +17
The high temperatures have remained at bay all day, hopefully the line cleaning yesterday did it's job. I have been feeling a little bit better today so the morphine was turned a notch. I needed a haemoglobin transfusion and my white cells were still 0.1.
  Thursday, 23rd September 1999    T +16Photo Album
My temperature spiked in the morning and another 2 bugs have been found. The thought is that they might be in my central line. So Dr John cleaned out my line by putting some hydrochloric acid in it and then extracting it back out, this was done 3 times just to make sure. We hope this works otherwise they would have to change my whole central line which would be a very dangerous procedure at the moment. I also had to have a platelet transfusion today. The highlight of my day was having Nurse Jo to look after me today.
  Wednesday, 22nd September 1999    T +15
My white cells dropped from 0.2 down to 0.1 today, but there are still some neutrophils there. Last night's blood cultures showed a serious bug in me, but I am still in reasonable spirits. 
  Tuesday, 21st September 1999    T +14
I had a good night last night, but then spiked another temperature in the morning, however it then stayed down for the rest of the day. Both Cathy and Karen came in to play at different times today, I sat up each time and had a great time. My white cells look like they might be starting to rise, there might even be some neutrophils there also.
  Monday, 20th September 1999    T +13
My eyes are now also sore, I have started on some eye drops. My temperature stayed high most of the day too so I was feeling pretty miserable all day.
  Sunday, 19th September 1999    T +12Photo Album
My temperature continued to spike overnight, so this morning an antifungal antibiotic was added to the long list of medications I am already taking. I drank some water today, this was the first time in over a week. 
  Saturday, 18th September 1999    T +11
My tummy was still sore today, so this evening the morphine was turned up another notch. My temperature also spiked this evening, which is the first time in a few days.
  Friday, 17th September 1999    T +10Photo Album
My liver function has almost returned to normal. This morning I was still a bit sore and  not eating or talking much. This evening though, I did manage to talk for a little while, it took everyone by surprise. I needed both a platelet and a haemoglobin transfusion today, still no white cells coming back either, maybe next week.
  Wednesday, 15th September 1999    T +8
I am still feeling miserable, my mouth is sore and is my tummy. The morphine was turned up again today to relieve some of the pain. My liver was slightly swollen, so I had an ultrasound to check it out, nothing serious was found. 
  Tuesday, 14th September 1999    T +7
I had another platelet transfusion today. My potassium level was also low, so yet another pump was added to infuse potassium intravenously via my central line. I also started daily GCSF injections to assist the growth of my white cells.
  Monday, 13th September 1999    T +6
I am still feeling miserable, not talking or eating. The morphine was turned up again today, which makes me quite sleepy, but I still managed perk up a little bit when Cathy came to do some painting and gluing with me. Another pump was added today, because of all the drugs that need to go through each day, a total of seven pumps now. Things will probably stay about the same until my counts start to recover, which isn't expected for a while yet.
  Saturday, 11th September 1999    T +4
More of the same overnight, the morphine has been turned up to try and relieve the pain as well as starting another drug to try and ease the stomach cramps. I spiked a fever today, so I am now also on antibiotics, there are a total of six pumps now hooked up to me. 
  Friday, 10th September 1999    T +3
I am still feeling miserable, not talking, eating or drinking. Along with diarrhoea I am also getting stomach cramps which are pretty painful. My platelets and haemoglobin were both low today so I had transfusions of both.
  Thursday, 9th September 1999    T +2
After more diarrhoea overnight I am feeling pretty miserable. I haven't eaten or drank anything today, I am still losing weight, I am now down to 11.5kg. I have started on morphine to try and ease the pain.
  Wednesday, 8th September 1999    T +1
As expected, my counts are still on their way down. I will probably start needing haemoglobin and platelet transfusions within the next few days. It is expected to take somewhere between 2 to 4 weeks for the transplant to engraft. To try and keep my stomach working, the nasal gastric feeds have been started up, but at a very low rate.
  Tuesday, 7th September 1999    ***TRANSPLANT***Photo Album
This morning Cathy came in to help decorate my room, we have gone for a sea theme. There are fish, seaweed, jelly fish and octopi so far, and we will be adding to it with more craft sessions. 

Today was the big day, I had my second transplant. This time it was umbilical cord blood that came from an unrelated donor. It was put into my central line, just like a blood transfusion. Now we sit and wait for the transplant to engraft and start producing blood products of its own, this could take up to 4 weeks.

Elmo, from Sesame Street, was also at the hospital today. He came to Camperdown Ward too, he wasn't allowed in my room, but still came to my door to say hello.

  Monday, 6th September 1999    T -1
I moved into the transplant room today, I am not allowed out of this room until my counts have returned to a satisfactory level, which will probably quite a few weeks away. Everyone who comes into the room needs to scrub and gown up like last time. I am still feeling a bit under the weather today, not talking much. I had a heavy dose of chemo today, Melphalan, as well as starting on Cyclosporin which helps my body to not reject the transplant. I will need to take Cyclosporin for quite a few months. I vomited again as well as having diarrhoea, this is probably from the chemo combined with the TBI I have had. 
  Sunday, 5th September 1999    T -2
I had another NG tube put in, I wasn't very happy about that, at least I had a night without it in. All my oral medicines now go down my NG tube, I don't put up as much of a fuss this way, this is much easier for Mummy and Daddy. The nasal gastric feed has been stopped for the time being, the TPN also needs to stop today for a few days because of the chemo tomorrow. I had diarrhoea today, this is probably also due to the nasal gastric feed, this should settle though. I am still nibbling on some things but don't have the huge appetite I had the other day.
  Saturday, 4th September 1999    T -3
I started on a nasal gastric feed last night, along with the TPN I am already having. However, I didn't feel like eating during the day and this evening I vomited and out came the nasal tube again. This may have been due the nasal gastric (NG) feed, I didn't tolerate it well last time I had it, but was probably a combination of the feed and the ATG. 
  Friday, 3rd September 1999    T -4
Today I was able to eat for a while after the morning TBI session before having to fast, so I was much more relaxed. Cathy and Karen both came to play and sing, we had a great time. This afternoon's TBI session was the last, I will have a strong dose of chemotherapy on Monday.
  Thursday, 2nd September 1999    T -5Photo Album
I didn't get a chance to eat after this morning's TBI session before having to fast for the afternoon session. I was very irritable because I was feeling very hungry. I ate very well after the second TBI, as I did last night also.
  Wednesday, 1st September 1999    T -6
I started my Total Body Irradiation (TBI) course this morning. There are 2 doses each day for the next 3 days, each of which is under general anaesthetic. During the morning session I had another nasal gastric tube put in while I was under. I have to fast before each general anaesthetic, which is a bit awkward as another drug I am now on is a steroid called Methylpred which gives me a huge appetite.


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