Tuesday 28th September 2004 (Day 1)
After being dragged out of bed at some really
unnatural hour by Tom because "Daddy, Alec cryin'.
You come now", (Alex was sat in bed happily playing
with toys,) we all went back into hospital.
Ward 10 was even more like organised chaos that
before. There are a lot a new arrivals and no bed
free for Alex. We went for lunch at the Thackery
Musium while waiting. Tom was so full of energy at
one point, waiting in the queue to order food, he
licked the bum of the guy in front! Yuck.
We only had to wait a little longer till someone else
left and we were given a side room. Alex was
immediately given his first chemotherapy but that did
not stop him from running round trailing the drip
behind him. We have been told that this cycle
contains drugs that are even more (cyto)toxic than
those before. Even so we were not expecting Alex to
be poorly for a week or so. It was a shock when
Kirsten and Tom had gone home, Alex seemed to be
asleep, I took a nappy down to the bins. On returning
Alex was crying and had been sick, lots and his NG
tube was coming out of his mouth again.
He was sick a dozen or so times but he needed a new
NG tube so nurse Jaydeen put a new one in. Alex kept
trying to sleep but was still being sick. He was
prescribed an iv anti-sickness and fell asleep
This cycle can affect the eyes so eye drops are
needed every two hours in the day and every four over
night. Alex had to be woken shortly after falling
asleep to be given the drops. Welcome back to
Wednesday 29th September 2004 (Day 2)
Just a routine day of chemo. Alex played most of the
day. He was released of all the pumps early morning
so he jut ran around the ward causing mayhem.
Thursday 30th September 2004 (Day 3) - Our
Booted out of our room and placed with the lower
classes in a bay. We've had bed 3 before - there's
not many Alex has not stayed in - still staying in a
bay is a thousand times more difficult that having a
room. It's very rarely quite, even in the early
hours. Hospitals are not a place for the sick.
For lunch we were going to have a romantic dinner to
celebrate out fourth wedding anniversary in a nice
Italian restaurant. Instead we went shopping in Ikea.
Don't get me wrong, Ikea was my second choice. Very
Thanks to Joan, David and Tom for looking after Alex
while we were having a romantic errr... shop.
In the evening, Kirsten and I got all dolled up in
our least hospital smelling togs and went to the
cinema. The film was a real chicks flick, so much so
that 99% of the audience was female or under duress.
Quite a good film but very girlie.
Thanks to my Mum and Dad for looking after Alex while
we were surrounded by girls.
I had a huge headache, so Kirsten kindly sent me
packing to Eckersley House even though it was my turn
on duty that night.
Friday 1st October 2004 (Day 4)
Confusion reigned. We were told that Alex could go
out for the day. I rushed to ring my Mum and Dad, who
were coming to look after him but the phone had run
out of battery. Just after that, Mum and Dad arrived.
Oops. They went off to Amber's wedding and we went to
Alex enjoyed taking the dogs, Grandad, Mum and Dad
for a walk in Middleton Woods. He's becoming better
with voicing objects: he now says "woof" to the
dogs... and the trees, cars, Grandad. "Moo" is now
reserved for horses.
David took Kirsten and Alex back to the hospital and
Tom and I went back home after meeting Uncle Andrew
at the airport, which Tom really enjoyed. Note this
is the brave Kirsten on duty for a third night in a
row. It's tiring just doing one, especially in a bay.
The other kids are waking all the time and Alex needs
eye drops during the night.
Saturday 2nd October 2004 (Day 5) - Amber's
Congratulations to Amber and her new husband on their
wedding day. Best wishes from all the Squires clan
and we hope to see you soon.
Tom and I went to
Babies in the morning. Paul has been kind enough to
hold a place open for Tom while we are in a muddle.
Thanks Paul, Tom really enjoys his Saturday morning
Alex was free to leave the hospital again so Tom and
I picked them up. We rampaged around Tropical World
in Leeds. Alex was unusually independent and stomped
off in any direction that took his fancy. For someone
who has just learnt to walk, he can't half disappear
into a crowd quickly.
Kirsten had dropped her purse at the cinema on
Thursday so we used the excuse to go back to see
another film. Joan and David took Alex back to
hospital and Andrew tried to tire out Tom for the
Sunday 3rd October 2004 (Day 6) - Last day of
This is the last day of chemo. Unless Alex relapses
and the docs have to try something else, this is the
day that Alex finishes the protocol. He still has to
battle the side effects and we are really not looking
forward to the infections, especially since a
consultant warned us that it may be worse than the
Alex finished his bright blue chemo at about 8. All
we needed then was the OK from the doctors. It was
just after 11 when we nearly ran out of the door.
Lunch with my Mum and Dad at Bolton Abbey cafe
followed by a walk to the Cavendish Pavilion with
Cormac, Belinda and Jacob. Tom was carried most of
the way there but since it was pouring down on the
was back, he was very happy to splash through
every puddle in his new shoes. We retired back
home to warm up.
Alex seemed to go to bed contented but very tired. I
set up his over night drip feed and Kirsten gave the
20:00 eye drops. Just after that he was very sick and
we had to pull the NG tube out. I rang the hospital
who told us to give more anti-sickness drugs and see
if he sleeps through the night. Alex is very pale, we
suspect that his HG count is very low, it was 8.2
yesterday, usually anything below 8 warrants a blood
transfusion. I don't think we'll be at home for long.
Monday 4th October 2004 (Day 7) - Happy
First order of the day was to have a new NG tube
fitted. The Outreach nurses from Airedale General
Hospital came to the house again. They are a really
nice bunch and are always willing to out of their
way. I had given Alex his medicines orally even
though they taste foul but now we could catch up with
his brand new shiny tube.
We took my Mum out for a birthday meal at Steps in
Ilkley. It's nice to have an excuse to relax and even
Kirsten mellowed - after three big glasses of wine.
We have been taking his temperature every hour or so
and it was steadily going down. When he went to bed
it was at 35.2C. Another call to Ward 10 and they
said to cover him with thick blankets to warm him up
but if it goes down any more to bring him in.
During the last cycle I remember his temperature
dropping then bouncing up to 39C, he was then very
poorly for weeks. Dread is probably a mild word. I've
not really dreaded anything before but waiting to see
if Alex is as poorly as last time fills me with a
real and proper dread. Worse than knowing you have to
go to the dentist.