Matthew's Room

Diary1st - 31st August 1999

  Tuesday, 31st August 1999     T -7 
Today was the start of the Countdown to Transplant. I started on a drug called ATG, which helps my body to not reject the transplant. Unfortunately it also causes high temperatures, which are controlled with hydrocortisone, phenergan, and panadol. I got up to 40C, the highest I have ever been. Tia Ana and Doug came to visit, so did Nurse Jo, she is on a course for the next few weeks, so it was nice to see her. I had another nasal gastric tube put in, it took 3 attempts for it to stay in. Later that evening however, I vomited it out.
  Monday, 30th August 1999 Photo Album
Today I moved back to Camperdown so that I can start the countdown to transplant tomorrow. The transplant will now be using cord blood, it will be next Tuesday 7th September. 
  Sunday, 29th August 1999 
I am eating a little bit again, my favourite at the moment is KFC gravy on toast, I have been having it for breakfast lunch and dinner. I need to build up my strength before transplant, the TPN seems to be working also I have put on about half a kilo.
  Saturday, 28th August 1999 
The morphine was stopped altogether today, and now I am feeling much brighter. My hip is still a little bit sore from the harvest, but not too much.
  Friday, 27th August 1999 
When they did the bone marrow harvest yesterday, they also kept some aside to test. The tests showed that I am still in remission and that there are no nasty cells there. The morphine was turned down a bit today, so I have been a bit more alert, I also haven't vomited since last night.
  Thursday, 26th August 1999 
This morning I had another general anaesthetic, this time for a bone marrow harvest. This is where they took about 200mls of bone marrow from my hip bone. Hopefully they won't need to use it, it is only there in case the transplant doesn't engraft, which if he has a cord blood transplant, is an about 5-10% of cases. While I was under, I also had a lumber puncture to put some chemo in my spinal fluid. I am currently on a morphine infusion for the pain, which has made me very sleepy. I been nauseas today and vomiting, but this could be from the morphine.
  Wednesday, 25th August 1999 
I was readmitted today, because tomorrow morning I will have a bone marrow harvest. This bone marrow will be kept in case the transplant doesn't engraft. I am back up in the Variety Ward while I still have this Rotavirus. I have also started on TPN (Total Parenteral Nutrition), via my central line, to try and put some weight back on. I have lost about 2kg since the start of the last chemo, and lots recently with all the vomiting.
  Tuesday, 24th August 1999 
I had a CT scan this morning under general anaesthetic to get ready for next week's radiation therapy. It was a stressful morning, first waiting for my turn and then waking up to find I had a nasal tube back in my nose again. I do not like nasal tubes and have been miserable all day. I'm still vomiting and I have lost a lot of weight in the past two weeks. Luckily (for me, disappointment for Mum & Dad) I vomited out the nasal tube this evening. ...I managed a smile for the first time today!
  Monday, 23rd August 1999 
I was discharged today, but I will still need to have Aciclovir 3 times a day intravenously for quite a while, Mummy and Daddy have been shown how to do this. This afternoon I had to go to Westmead Hospital (the big people's hospital) to discuss my radiation treatment. Tomorrow I go back there for a CT scan so that the doctors can plan the radiation treatment which starts next week.
  Sunday, 22nd August 1999 Photo Album
My temperature is under control, but I have still been vomiting. 
  Saturday, 21st August 1999 
I have still been vomiting a bit and the diarrhoea is still there too. I have lost some weight this last week. I have still been eating, but only a little bit. Mummy and Daddy are bringing in all sorts of things for me to try, to see if I will eat more. I need to build up my strength before going into transplant again shortly.
  Friday, 20th August 1999 
My hearing test went well this morning, I have perfect hearing. My temperature keeps spiking so I have been started on antibiotics again. 
  Thursday, 19th August 1999 
I was hoping to go home today, but overnight I started vomiting and now also have diarrhoea. I had a dental check up today and am scheduled for a hearing test tomorrow morning. Next week I will be going next door to the Adult's hospital to see the people in the Radiotherapy section to prepare for my radiation therapy.
  Wednesday, 18th August 1999 
I started having my pre-transplant tests again today. I had a chest X-ray, an echocardiogram as well as a kidney function test. There are a number of other tests still required, which will happen over the next week or so. Transplant is tentatively scheduled for the 10th September. 
  Tuesday, 17th August 1999 
I only need to be hooked up for 3 one hour courses of medication a day, so I was allowed home on a gate pass today. The shingles seem to be getting better, they are not as inflamed and are starting to crust over. Hopefully it wont be too long before I can get out.
  Monday, 16th August 1999 
I went to clinic for a check up this morning. My white cells and neutrophils were both up, haemoglobin and platelets were both down a little bit but not enough to need a transfusion. My shingles still hadn't started to get better so I was admitted so that I could start on some intravenous Aciclovir, instead of the oral version that I had been taking for the last week. The Camperdown ward was full, and neutropedic kids shouldn't be near someone with shingles, so I was given a bed in the Variety ward (the infectious diseases ward).
  Saturday, 14th August 1999 
My shingles have started to hurt. They are still just isolated to my right arm though. They should clear up in the next week or so, I hope.
  Friday, 13th August 1999 Photo Album
I had a special delivery this morning from Cadbury. I love their Tiny Freddos, but you can't buy them by themselves anymore, only in their Favourites box. Cadbury found out about this and sent me a huge basket filled with Tiny Freddos and lots of other yummy goodies. Thank you Cadbury. 
  Thursday, 12th August 1999 
I had an early start this morning to have a blood test and more importantly a bone marrow test. While waiting for the bone marrow results I had a platelet transfusion. The bone marrow results came back after lunch and were very good, I am back in REMISSION. There is still a long hard road ahead, but I have taken the first crucial step. The plan, at the moment, is to push ahead with another transplant as soon as is practical. There are lots of things to coordinate, which will probably take a few weeks. 
  Tuesday, 10th August 1999 
Back to clinic again this morning for a quick check of my shingles, everything was much the same as yesterday so I was allowed home. On the way home we stopped at Parramatta Park to feed the ducks. In the afternoon I had fun playing with playdough in the cubby house.
  Monday, 9th August 1999 
I went to clinic today for a check up, blood test and some platelets. The shingles are still just limited to my right arm, but if they continue to spread then I may have to be admitted to hospital again. I am making my own haemoglobin again, and my white cells and neutrophils have come up a lot too, 3.5 and 2.3 respectively. These numbers are still GCSF assisted, and will go down quite a bit once I stop the GCSF, tonight is my last needle. The bone marrow test is scheduled for Thursday morning.
  Saturday, 7th August 1999 
I have a rash now on my arm that looks like shingles. So I am taking medicine to help this. Shingles is a virus that resides in people who have had chicken pox but only shows itself when the body's immune system is low. It is not as contagious as chicken pox because it is only spread by direct contact with the rash. Anyway, it was good to spend a night at home, even if it was in Mummy and Daddy's bed. 
  Friday, 6th August 1999 
Yeaaahhh!!!! I was discharged this evening. My temperature has been under control for a couple of days now and my neutrophils are up to 0.5, so I was able to finally go home. I will be back at clinic on Monday for a blood test and platelets. If my counts are high enough next week, I will probably have a bone marrow test on either Wednesday or Thursday to see if I am in remission, fingers crossed everyone. My haemoglobin was down today so I needed a transfusion before going home.
  Thursday, 5th August 1999 
I needed a platelet transfusion, and my temperature is still behaving itself.
  Wednesday, 4th August 1999 
My temperature stayed down overnight and I was able to get out on a gate pass today. My neutrophils are on their way up, they were at 0.2 today. They have increased from yesterday's level of 0.05. On our way back to the hospital, we stopped at Parramatta Park to feed the ducks.
  Tuesday, 3rd August 1999 
Today was Nurse Jo's birthday, Happy Birthday Jo, I made a card to give to her. My temperature is still spiking, so no gate pass again. The Red Cross have also found 3 umbilical cord blood donor matches here in Sydney if none of the bone marrow donors are suitable.
  Monday, 2nd August 1999 
I needed more platelets today and still have high temperatures, so I spent another day in hospital. The Red Cross have found 35 unrelated bone marrow donors in Australia who look like they are matches, and more than 100 overseas. However, they are still continuing the family search.
  Sunday, 1st August 1999
No gate pass today, my temperature was still spiking. 

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