At least a week ago Trish sat up one night churning through the pages
of Lance Armstong's book,
Not About the Bike: My Journey Back to Life, an autobiography tracing
his diagnosis and recovery from cancer. I finally finished today. Lance,
a world-class cyclist, won the Tour de France in 1999, 2000 and 2001. The
book is probably not for everybody, but it gave us something to think about.
A snatch of Van Goghing.
Aidan's handi-work with the Digimon
Click to enlarge.
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.
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.
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.
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.
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
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.
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.
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.
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
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.
Aidan keeping busy. Click to enlarge.
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.
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.
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.
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.
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.
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.
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.
Aidan and Mum with a fresh batch of stickers from Mrs. Birch.
Click to enlarge.
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.
Aidan's appetite returned a little, which is something good.
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.
Aidan and Trish returned home today.
There was much rejoicing.
Story time with Aunty Nicola ...
Story time with Aunty Nicola. Click to enlarge.
Last updated: 12-Feb-2002