Matthew's Room

06-July-1996  to  16-October-2000


Hello, my name is Matthew and I was diagnosed with Acute Myeloid Leukaemia (AML) in September 1998. This website documents my journey through six months of chemotherapy and an autologous bone marrow transplant. Three months later I relapsed which meant more chemotherapy followed by another bone marrow transplant, this time from an umbilical cord blood donor. Then, when all seemed well and the Leukaemia was in remission, I developed a serious lung problem. 

Bandaged Bear Day 2000

The cause of the lung problem was never identified, but candidates were GVHD or just too much damage from having had 2 bone marrow transplants. I spent my last 3 months in hospital. I was on oxygen 24 hours a day. My body couldn't take anymore, and on Monday 16th October 2000 I went back to Heaven.

 

This website started as a way for family and friends to keep up with Matthew's progress. Now I will keep it online as a tribute to my son, a beautiful boy who had to endure more in his short life than anyone should ever have to. 
                                                                    Anthony  (Matthew's Dad)

You can read my story in my Diary, all the Latest News is on this page. To see how I've changed along the way, go to the Photo Album and you may also want to look at my Favourite Things page. For more information about leukaemia or cancer in general, check out my Leukaemia Facts page, which has a new Cancer Links section.

I would love to hear from you, e-mail me at matthew@mask.net.au
Thank you to all the people who have sent me e-mails, I enjoy having them read to me, and appreciate all your kind thoughts and best wishes.

I have a guestbook for all my visitors to sign.

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  How you can help, click here to find out more. 

Click here to see an interactive 360░ panorama of the hospital foyer.
Click here to see an interactive 360 degree panorama

Latest News

  Monday, 16th October 2000  *** GOODBYE ***
I had more episodes overnight. I am now having the Iloprost every 2 hours.

After one of this mornings Iloprost doses Matthew's eyes locked to one side and he wasn't able to respond. This may have been due to a brain haemorrhage. His oxygen saturation dropped a number of times. Finally, his heart just gave up and stopped. Matthew died at 1:05pm this afternoon. 

His brave fight is finally over, he can now rest. He touched many people's lives with his infectious smile, life will never be the same again without him. 

We all love you Matthew.

Please keep Matthew in your prayers.

Thank you to everyone who has supported us over the last 2 years.

  Sunday, 15th October 2000
I had some more episodes overnight.
  Thursday, 12th October 2000
I had a cannula put in this morning so that I can start having some intravenous steroids over the next 4 days. I actually had a much better night, where I required much less oxygen, only 1L/min.
  Wednesday, 11th October 2000
Last night was a terrible night, at about 2am my breathing rate increased dramatically, but they were very shallow breaths, so I wasn't getting enough oxygen. My oxygen saturation started to plummet, my breathing rate increased further, I went very pale, my eyes started to roll back, I started to black out, things didn't look very good at this point. Daddy had the nurse bring another dose of Iloprost in (very quickly). Once the Iloprost was going in, my saturation started to come back very quickly. By this stage the room was full of doctors and nurses, who had the crash cart ready, but luckily it wasn't needed. I was now stable again. The doctors checked me over, everything appeared OK for the time being.

I had a few more similar episodes overnight and during the day, but they were much milder and settled of their own accord. I was being prepared to have a general anaesthetic, so that I could have a high resolution CT scan, but just before going in, it was decided that it would be too risky in my current state and so didn't go ahead.

The current thought is that the abnormalities from last week's CT scan are most likely due to GVHD (Graft Versus Host Disease) and so we will go ahead now with immunosuppression treatment to counteract it. This means a few days of ultra high dose steroids followed by another immunosuppression drug.

On an even sadder note, at the time when I was having my "crash", my friend Melissa passed away, downstairs in Camperdown. She will be missed by everyone, please keep her in your prayers too. Goodbye Melissa and may God bless you.

  Tuesday, 10th October 2000
Today my oxygen saturation is still sitting in the high 70 to mid 80% range most of the time. I had another echocardiogram to check on the status of my pulmonary pressure. It was still the same as the last one I had a few weeks back. My INR was also a bit on the low side today. I will have a CO2 monitor hooked up all night, that will record CO2 levels, pulse rate and oxygen saturation.
  Monday, 9th October 2000
So that more tests can be done on what was found on the CT scan last week, I was admitted to hospital again today, I am back up in Variety ward. The first thing is to try and get a high resolution CT scan done, which means possibly another general anaesthetic.
  Friday, 6th October 2000
After quite a good week, my oxygen saturation started to drop again last night. Some preliminary results of the CT scan show that there are some irregularities in the lung, this time on the airway side of the lungs, which haven't shown up before. More investigation and further tests will probably be done next week.
  Thursday, 5th October 2000Photo Album
My appetite has started to come back, I am starting to eat a little bit more. My voice has also improved slightly. I had another regular blood test to check my INR level again. I also had a much better hydrotherapy session today, where I did lots of walking and kicking. After the pool I then had a chest and neck CT scan to see if anything has changed.
  Tuesday, 3rd October 2000
I went to the hospital to have my hydrotherapy session, but I wasn't very motivated and didn't want to do much. It has been over a week since my last session, and I seem to have forgotten how to stand again. My blood test showed my INR level was a little bit low, so my Warfarin dose has been increased slightly.
  Friday, 29th September 2000Photo Album
We took a train to the Olympic Village at Homebush this morning to watch 2 games of Handball. We had great seats, right on the sideline. One of the German players came over and gave me a souvenir ball to keep. When we were leaving, we were swept up in a sea of people. Estimates of attendance, at Homebush today, were between 300,000 and 400,000, that's a lot of people. We then went to the hospital where I had a blood test.
  Thursday, 28th September 2000
Cathy came over to play this afternoon, we did lots of fun things.
  Tuesday, 26th September 2000
I spent most of the day at the hospital. First I had a blood test, then I went to clinic. I have a Thrush-like infection in my mouth, probably from not eating and drinking enough, so I have started back on mouth washes and a topical antifungal antibiotic. Later in the day we saw a lung transplant specialist, who was visiting from Melbourne. A lung transplant is definitely out of the question, but it was interesting to hear his views on the situation as he is also a cardiologist.
  Sunday, 24th September 2000
We went to the Parramatta Fair today. They have closed off a number of streets in the heart of Parramatta and have stalls and entertainment as well as big TV screens so that everyone can still watch the Olympics.
  Saturday, 23rd September 2000Photo Album
Tonight we went into the city to see the Olympic rings on the Sydney Harbour Bridge and to see the Opera House change colours. There were so many people in the city, most of them there just to soak up the Olympic atmosphere like us.
  Monday, 18th September 2000
I am feeling a bit better today.
  Sunday, 17th September 2000
I wasn't feeling too well this morning, I vomited and then my oxygen saturation dropped dramatically down to 73%, which is very low. I immediately had another dose of Iloprost which brought me back up, but to be safe we then went in to the hospital for a check up. We spent about 3 hours in Casualty, where I had a blood test, and checked my blood pressure. The results of the blood test was fine, so I was able to go home. I will be back in the morning anyway for a regular visit.
  Friday, 15th September 2000
Hydrotherapy and a blood test at the hospital in the morning. This evening we went down to Pop's house, and then drove down to the river to see the Rivercat go past carrying the Olympic Torch on its way to the Olympic Stadium. It was very exciting, with lots of smaller police boats escorting it down the river.
  Thursday, 14th September 2000
Millie, another of the Sydney Olympics' mascots was at the local shopping centre today, so we went to say hello.
  Wednesday, 13th September 2000
Back to the hospital for more hydrotherapy and a blood test. The blood tests are primarily to check and adjust my Warfarin dose, which there is still no set pattern for yet.
  Tuesday, 12th September 2000
I went and saw one of our local doctors this morning, who is also a homeopath. My current treatment is only alleviating the symptoms and not actually trying to cure the problem, the hope is that the body will do this itself. We are seeing this homeopath, in an attempt to help the healing process along.
  Monday, 11th September 2000
I went to the hospital today for hydrotherapy and a blood test. Tia Ana came over for a visit.
  Saturday, 9th September 2000Photo Album
We all went to the shopping centre today to see Syd, one of the Sydney Olympics' mascots.
  Friday, 8th September 2000
It was good to sleep in my own bed for a change, it has been a long time more than 9 weeks. I went back to the hospital this morning for a little while, just to have a hydrotherapy session and for a blood test and then went home again.
  Thursday, 7th September 2000
I had a very good night. Yeeeaaaahhhhh!!!!!! I was discharged today. My oxygen saturation, on a low amount of oxygen, is good at the moment so I was allowed to be discharged. I still need to be on oxygen while I am at home, and still need to take the nebulised Iloprost, but at least I can get to sleep at home. My oxygen levels are still fluctuating quite a bit, but while they are good it is better to be at home. We can only provide a certain amount of oxygen at home, when my requirement exceeds that I will need to go back to the hospital again and get readmitted.
  Wednesday, 6th September 2000
I had a bad night last night, my oxygen saturation kept dropping so the amount of oxygen I am requiring had to be increased throughout the night. Because of the bad night, I didn't go swimming. I went to the dentist to get some small cavities fixed up. I still got out on a gate pass, for a short while anyway.
  Tuesday, 5th September 2000
I went to the pool this morning for my hydrotherapy, but later my oxygen saturation was down so I didn't go out on a gate pass today.
  Monday, 4th September 2000
I wasn't feeling very happy this morning, so I didn't want to going to hydrotherapy. 
  Sunday, 3rd September 2000Photo Album
Happy Fathers Day. I got out on a gate pass today. We all went to Av˘ and Avˇ's house for a Fathers Day lunch.
For all the earlier entries, have a look in my Diary.

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Last Updated : Friday, 29 June 2001

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