Matthew's Room

Diary1st - 31st July 1999

  Saturday, 31st July 1999 Photo Album
I had another gate pass today. When I got home there was a surprise waiting for me. Mickey had returned. Last week I had let him go and saw him fly away. Diddy and Bill found him and brought him back with them from Coolangatta. Mickey also found a friend, Pooh Bear. When I got back to hospital I needed to have a haemoglobin transfusion. It looks like my neutrophils might be starting to come back, but it is early days still, the counts are very low.
  Friday, 30th July 1999 Photo Album
The morning started off with me needing platelets. My temperature has been under control with a new antibiotic which unfortunately I have been reacting to by getting the shivers. I was able to go out on a gate pass though, and what a great gate pass it was. 

Today the Starlight Foundation granted me a wish, I got to meet The Wiggles. First we had afternoon tea at the Thelma and Louise Cafe at Neutral Bay wharf with Nurse Jo. Lorisa from the Starlight Foundation met us there and took us to the studio where The Wiggles were recording. We met all The Wiggles, Anthony, Greg, Murray and Jeff, they were very friendly. I asked them to sing 'Baby Baluga' for me, which they did and everyone sang along. Dorothy the Dinosaur came out to say hello too, then she had to go back to her rose garden. Jeff kept falling asleep and I had to wake him up. It was a day I will never forget.

Thank you very much to everyone involved. Nurse Jo for putting in my application to get things started and coming with me. The Starlight Foundation for arranging everything so quickly. Lorisa for escorting us and especially The Wiggles for taking time out from their busy schedules to spend time with me. Thank you.

  Thursday, 29th July 1999 Photo Album
My temperature continues to spike, so I didn't get out on a gate pass today. I have started on yet another antibiotic try and get it under control. Today there was a Pyjama Party at the hospital, the nurses came to work in pyjamas and there was a concert in the Starlight Room. The Wiggles were the main attraction of the day. Captain Feathersword and Anthony Wiggle, came to Camperdown Ward to visit the kids, like me,  who couldn't go to the concert. 
  Wednesday, 28th July 1999 
While home on a gate pass, I had a high temperature so I had to go back to hospital early. I will probably need to start on some more antibiotics, I am already on two different ones at the moment anyway. Even so, my spirits are still high and I am still eating well.
  Tuesday, 27th July 1999 
I had a platelet transfusion today before going out on gate pass. 
  Monday, 26th July 1999 
My appetite has increased again, I am eating lots of things. I needed a haemoglobin transfusion when I got back from my gate pass tonight. 
  Saturday, 24th July 1999 
When I got home today on my gate pass, I took my big Mickey Mouse helium filled balloon, that Diddy and Bill sent me for my birthday, outside to play. I let go of Mickey and he took off into the sky, we watched him flying for almost half an hour before we lost sight of him. I hope he doesn't get into a flight path and give a pilot the fright of his life. If you hear about any UFO sightings today it was probably just Mickey.
  Friday, 23rd July 1999 
Everything is still the same. I am allowed out on a gate pass each day at the moment but I am  still on anti-biotics to keep the bugs away because my neutrophils are still non-existent. The doctors say that the median time for neutrophil recovery from this chemo is about 33 days (almost 5 weeks).
  Wednesday, 21st July 1999 
Another gate pass today. I had fun playing at home with Kayla. After dinner back at the hospital, I had a tummy upset and did a big vomit, my nasal tube came out. It feels good to have my nasal tube out. I can't have another one put in at the moment because my neutrophils are too low, I haven't used it much anyway so far.
  Tuesday, 20th July 1999 
Karen came and played some music with me and Kayla before I went home on a gate pass. My temperature hasn't spiked for a few days now, but I am still on antibiotics because my neutrophils are still bottomed out and I am very susceptible to bugs at the moment.
  Monday, 19th July 1999 Photo Album
I had another gate pass today. Because I like trucks and bulldozers a lot, Av˘ arranged for me to have a ride on a bobcat and a forklift, it was great fun.
  Sunday, 18th July 1999 
Yeah!! I got out on a gate pass today. It was fun to go home and play for a few hours. It was a beautiful day and great to be outdoors. When I got back to hospital I continued on my antibiotics, as well as starting on daily GCSF injections to help stimulate the neutrophil regrowth.
  Saturday, 17th July 1999 
I finished the chemo this morning. Now we are just waiting for my counts to start coming back up before the doctors can do another bone marrow test to check if I am in remission. My counts will still go down before they come up though. I also had a haemoglobin transfusion today.
  Friday, 16th July 1999 Photo Album
I needed a transfusion of platelets today. I did some more painting with Cathy. My spirits are still high, even though I have all these tubes connected up again and am having high temperatures. Tomorrow is the last day of this chemo.
  Thursday, 15th July 1999 
I was feeling a little bit down  this morning, mainly due to a high temperature. After some panadol and a visit from Shell and David, who brought lots of fun things to do, I started to feel better. I also regained my appetite and ate three mandarins.
  Wednesday, 14th July 1999 
My counts are all on their way down as expected, I will probably need blood transfusions in the next few days. Cathy, the play therapist, came around again today and we did some fun stuff, like gluing and puzzles, later we also had a music session with Karen too. I had a high temperature today, so I started on anti-biotics, we are not sure yet if it is due to a bug or if is just the chemo. Because I need to take more medication now, and that I might get mucositis soon, I had a nasal gastric tube put in. They are never fun.
  Monday, 12th July 1999 
This morning's echocardiogram was fine. Then it was on to pathology for some blood tests. After this it was a long day waiting in clinic for a room to be ready in the Camperdown Ward. I am now back in Camperdown and have started a 5 day course of chemo. 
  Sunday, 11th July 1999 Photo Album
Today I had my birthday party. It was lots of fun, I got to play with friends that I haven't been able to see for a long time. I also had lots of great presents and played some fun games, my favourite was the treasure hunt in the back yard.

Tomorrow I go back to hospital to start a 5 day course of high dose chemotherapy. First of all though I need to have an echocardiogram to check my heart, followed by some blood tests.

  Saturday, 10th July 1999 Photo Album
This morning I went to see Nurse Pania's wedding, it was fun throwing rose petals over her and her husband as they came out of the church. We spent the afternoon getting ready for my birthday party tomorrow.
  Friday, 9th July 1999 Photo Album
I had a very busy fun day today. Aunty Nerida and Uncle Stan, from Canada, arrived in Sydney this morning and dropped in for a short visit on their way out to Trangie. We then went on a rivercat from Meadowbank to Circular Quay and then took a bus to Darling Harbour. We spent the afternoon at the Sydney Aquarium, my favourites were the stingrays and sharks. We took a ferry back to Circular Quay and then 2 trains to get back to Meadowbank. We certainly tested out the public transport system.

Dr Geoff rang today and said that the lumber puncture results were good and that there were no leukaemia cells in my spinal fluid. (So far, I have never had any leukaemia cells in my spinal fluid) At least that is one less thing to worry about. He also said that for an unrelated bone marrow transplant, that it looks like there are some people with possible matches here in Australia as well as some overseas, but we still need to check family members.

  Thursday, 8th July 1999 
First thing this morning, I had a bone marrow test and lumber puncture, under general anaesthetic. I also had another birthday cake and presents in clinic too. The bone marrow test showed what we feared, that the leukaemia has well and truly come back. The results of the lumber puncture aren't back yet. We have decided to attack the leukaemia full on again with another high dose chemotherapy treatment starting Monday. This time there will be a new combination of drugs that I haven't had before. The aim is to get into remission and try another bone marrow transplant, but this time with someone else's bone marrow. The odds of even getting into remission are only about 50% and following that with a high risk transplant, but we have to try and this is the only option that offers any hope at all of survival.
  Wednesday, 7th July 1999  *** RELAPSE***
After a fun day yesterday, today came some very bad news. I went to clinic for my regular blood test and check up. My counts were down and there were also some leukaemia cells back too. This means that I have relapsed. The odds don't look good at this point. There are some treatment options available, but they all only hold a slim chance of success. I go to hospital again tomorrow for a bone marrow test and a lumber puncture to verify the extent of the leukaemia. A course of action will be decided once we have these results. 

Please keep me in your prayers, I need them now more than ever.

  Tuesday, 6th July 1999  *** My 3rd Birthday *** Photo Album
I started the day opening presents in Mummy and Daddy's bed. Soon after a clown arrived with a bouquet of balloons for me. We then dashed off to see the Hi-5 concert. It was a great show and I was lucky enough to go back stage to meet Hi-5, they were lovely people. We dropped in to Avˇ's house and had lunch and my first birthday cake for the day. After a well needed nap at home, all my family started to arrive for dinner, followed by another birthday cake. To finish my exciting day we watched some fireworks in the backyard.
  Monday, 5th July 1999  
Tomorrow is my third birthday, I am going to see Hi-5 in concert. I went shopping twice today for some birthday presents. First with Avˇ in the morning, and then with Pop in the afternoon. 
  Saturday, 3rd July 1999  
While Kayla went to a party this afternoon, I helped Daddy in the backyard. I had fun pushing my little wheelbarrow around. We emptied out the sandpit to fill it with fresh sand.
  Thursday, 1st July 1999  
My tummy upset must have just been a once off, it settled itself. I went to clinic this morning, my counts were all down a little. Today I got to see my blood being tested at Pathology by Jenny and Diane. When we got home I played on the computer, my favourite CD is 'A Day With The Wiggles'. 

In the afternoon we went to see a Kinesiologist. As far as conventional medicine is concerned, my treatment is complete and we are now just waiting and hoping that everything stays OK. Mummy and Daddy are investigating 'other' alternative therapies to see if they  offer any benefit.

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Last Updated : Sunday, 03 October 2004

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