AIDAN'S DIARY - SEPTEMBER 2001

02-Sep-2001
A snatch of Van Goghing.
- Dad

03-Sep-2001
Aidan had a reaction to something in the garden, resulting in spots on his body. To be on the safe side, Trish took him into hospital for a checkup. He stayed overnight for observation.
Mum's birthday dinner was cancelled.
- Dad

04-Sep-2001
The onslaught of Thiotepa and Carboplatin kicked off today. 
Thiotepa is nasty stuff that is purged through pores in the skin. This requires 4-hourly baths in oatmeal. Aidan was none too pleased with this notion and told anybody willing to listen. 
- Dad

05-Sep-2001
Met the little man undergoing the bathing ritual with Trish's assistance. In a bid to distract him from a necessary chore, we reviewed some songs from his class as school, including a ditty about eating garden worms. The chorus bounces along with the words "bite of the head, suck out the juice and throw the body away". I was dismissed by Mr. Smartass with a revised chorus of "bite of the head, suck out the juice and throw the Daddy away". Yes, he has spirit.
- Dad

06-Sep-2001
Aidan was in fine form today, staying busy and being his cheeky self. 
That of course went away when the nurses inserted a naso-gastric tube, which runs from his nose into his stomach.
Apparently, the entire ward learnt of Aidan's plight; he has a good set of lungs.
Unfortunately, the first tube didn't last long due to a bout of vomiting. It was replaced with a second tube.
The tube is required to ensure he receives nutrients when his throat and other tissue swells as a side-effect of the chemo.
Aidan has been looking darts into the nurses. Just not happy.
- Dad

08-Sep-2001
Relieved Trish for the day so she could spend some time with the other little people. Just picture a clown juggling balls and you get the idea of how things are going. We watched a good amount of TV, perhaps too much for this parent.
Aidan has always been a determined little chap. He pulled out his naso-gastric tube overnight, but claimed it just fell out. Considering the tube is rather long, it didn't just fall out. Gotta love his spirit.
The nurses were none too pleased with the lack of tube, so I needed to hold onto him for the insertion of yet another tube. While not happy with the intrusion, it went much better than the first two attempts, by all accounts.
- Dad

10-Sep-2001
The chemo, most likely the Carboplatin, has started to take effect. The little guy was miserable all day due to a swollen throat, fungal growth in his mouth and generally feeling yuck. Not a happy camper.
The stem-cell rescue (transfusion) occured about mid-day without incident. Daily blood tests will be used to gauge progress.
- Dad

11-Sep-2001
Aidan was still miserable today. The doctor prescribed morphine to help the little guy make it through the day. He hid under his blankets , but perked up when Kylie the play leader arrived to make a pigyata (a pig-shaped pinyata). Kylie is worth her weight in gold. She has a magic aura when it comes to helping the kids get through the tough times.
- Dad

12-Sep-2001
The little man was doing much better today, most likely due to the boosted morphine infusion. We sat and watched more of the Power Rangers (a favourite past- and present-time activity).
I was donated a crepe paper flower made by Aidan and Mum.
- Dad

15-Sep-2001
Aidan was lucent for a little while today, during which he worked through some activities in the Learning Ladder on a notebook computer. He's been playing with the software for over a year and doesn't seem inclined to quit.
The chemo was relentless in knocking out Aidan's immune system. The daily blood count showed some white cells, but it's still to early to predict any outcome.
Another side-effect of the chemo was a nasty rash across his lower abdomen. Various creams were applied to keep the dreaded itches at bay.
Trish returned home for a brief spell with Caitlin and the twins.
- Dad

16-Sep-2001
The third naso-gastric tube was lost early this morning during during a bout of vomiting. 
When the nuirse on duty explained to Aidan that the tube would not be replaced yet, he commented, "That's the best idea you've had all night". Yes, she was surprised by that response. Due to protocol another tube was inserted later in the day.
- Dad

17-Sep-2001
Recovery is a slow process. The little man slept for most of the day, with a brief spell of TV, singing and dancing in bed with furry friends from Sesame Street.
The daily blood sample showed the stem-cell transfusion had grafted into his bone marrow. Tube number four was removed earlier today, again due to vomiting.
- Dad

18-Sep-2001
Not a good day. Aidan spent the day sleeping and attempting to ignore a sore everything with the help of Mr. Morphine. There were further signs of the stem-cell transfusion taking effect with a neutrophil count around 300 per some unit of measure which I can never remember. Neurophils are the blood cells that whack out bacteria. Very useful.
- Dad

19-Sep-2001
A low blood platelet count resulted in a platelet transfusion in the afternoon. Once again, Aidan reacted to something in the donor's blood resulting in a severe skin reaction. He was doped up with adrenaline, cortisone and other stuff in a bid to control the reaction. Needless to say he slept and slept some more. The days was not without a bit of good news; his neutrophil count had crept up to 700.
- Dad

20-Sep-2001
Aidan was still recovering this morning from yesterday's dope-a-thon. He was hiding under the blankets this morning upon my arrival, but poked his head out to partially acknowedge the visit and to assist the doctors with a checkup. At the first opportunity, , he dived under the blankets again and was not seen again for a while.
The neutrophil count is on the up and up, clocking in about 3000; normal is between 3000 and 7000. There was talk by doctors of releasing Aidan in the next few days. We'll just wait and see.
On the way out this evening Aidan croaked, "I'm feeling better", before closing his eyes for another nap. 
Trish is doing a great job looking after the little man in the face of adversity and grumbles. Our families are doing an equally fabulous job juggling Caitlin, Liam and Evan, who are busy people at the best of times.
- Dad

21-Sep-2001
A better day. Aidan's immune system was starting to function a little, his sore throat eased a little and he was feeling hungry, which caught Trish off-guard. Expecting Aidan not to eat anything, she downed his pizza, only to be informed a bit later, "I'm hungry". She organised something very quickly, but was (and still is) a little bashful over the mini-drama. Fancy that, "stealing food from the mouths of babes". Aidan will of course remind her sometime in the future.
- Dad

22-Sep-2001
Joined Trish and Aidan from the afternoon onwards. I was very chuffed to see Aidan sitting up in bed and received the magic words, "Hello Daddy". A good day indeed. He sipped a little fluid and nibbled on a few morsels, which was a huge improvement. The lack of force-feeding via the nose tube and inability to swallow properly has resulted in a hungry little chap who is having a hard time stomaching food. He's a bit wobbly due to not ingesting food, but otherwise happy. We watched a bit more Power Rangers. We always watch Power Rangers. The videos are delivered on a weekly basis by Trish's cousin Patrick. Aidan's viewing would not be to such a distinguised standard without such intervention.
We managed a little normality, dining on some wood-fired pizzas and slurping a bottle of red with another set of long term hospital parents. 
Trish spends a lot more time than I with the various children and their families, but it's still good to share time with other people finding themselves somewhere they would rather not be.
- Dad

25-Sep-2001
Aidan was due to return home today with a naso-gastric (NG) tube for feeding, but we faced a small hiccup. Trish attempted a test run of NG feeding, but within five minutes Aidan had returned the fluid, the tube and lots more. After a quick cleanup he fell asleep. It was decided to keep him in hospital for a few more days without an NG tube.
- Dad

26-Sep-2001
Aidan's appetite returned a little, which is something good.
- Dad

27-Sep-2001
Better progress with eating and drinking. There's a chance of escape tomorrow. The theme title to the movie The Great Escape comes to mind.
- Dad

28-Sep-2001
Aidan and Trish returned home today.
There was much rejoicing.
- Dad

29-Sep-2001
Story time with Aunty Nicola ...
- Dad

Last updated: 12-Feb-2002