Friday 27th August 2004 ( Day 1 )
Early start to arrive back in Ward 10 for 8:30. The
ward was full, luckily the last bed available was in
a side room and not in a bay. Yay! Alex went under
the knife at 11:30. We were comforted by the nurse
and told to relax, so we had a huge lunch and fell
asleep in the room in Ward 10. We had to be woken to
fetch Alex at about 14:00. Not that his operations
took that long but he was asleep for a couple of
hours in the recovery room.
In theatre he had a bone marrow sample taken, a
lumbar puncture, a new Hickman line and chemotherapy
into his spinal fluid.
He was very groggy for the whole afternoon and was
sick a few times. Not the happiest baby around but at
least it's getting him better.
Saturday 28th August 2004 ( Day 2 )
Kirsten had a very listless night, which was to be
expected since he had a long sleep during the day and
was feeling very poorly. Joan and David came over to
look after Alex while Kirsten and I took Tom to
Consiton village in the Dales for Richard Atkinson's
30th birthday do.
Tom had a great time, climbing the hill with his
friend Erin and flying kites, building rock piles and
complaining about the cold. Alex, meanwhile, was
suffering with a high temperature and still being
We relieved the grandparents early evening. Alex was
asleep but not for long. He's still pretty poorly,
which could be due to the chemotherapy or an
infection picked-up during the operation the day
before. At this point in the last cycle he was a lot
During the night he was very unsettled. It only took
a dummy to settle him but he woke, screaming every 30
minutes or so.
Sunday 29th August 2004 ( Day 3 )
Much of the same. A few sicky moments, high
temperatures and not much energy.
Alex's god parents, Liz and Graeme Spencer, came in
to visit with their little one, Joe. Joe is looking
very big, especially when compared to Alex. Alex is
not a small baby but Joe, who is a couple of months
younger, does have a good head of hair. It does make
Joe look a lot older.
When we look back a pictures of Alex with hair, it
does not look right now. We are used to him having a
baby bald head.
Kirsten looked after him overnight. He was pretty
unsettled, as usual, but also had diarrhea.
Monday 30 August 2004 ( Day 4 )
A tried creeping in at 7:30 to grab my jogging kit
but Kirsten was standing there with Alex who was
crying, so I took him off to the playroom and never
got my jg.
He was a little moody in the morning with plenty of
diarrhea. The chemo drug that was supposed to be
ready early morning was made-up at lunchtime. This
was because the pharmacy was all but empty so there
was a long queue for medicines. Not really a problem
but if we do get to go home on Wednesday it will not
be first thing in the morning now, we'll have to wait
till the chemo has finished at lunchtime.
The chemotherapy for this cycle includes a drip that
lasts 24 hours a bag and there are five bags.
Mum, Kirsten, Tom, Joan, Andrew and I went to the
Bolton Abby Fate in the afternoon and left my Dad
with Alex. The nurses said they would do everything
to help and even bring beer one an hour (on
prescription?) to keep him calm.
Unfortunately for Dad, Alex had one of his worst
afternoons with lots of sick and diarrhea. The nurses
said Dad did a great job of amusing him but when we
arrived back at the hospital, Dad looked worse than
It took a while to get Alex to sleep, he was full of
energy but still feeling very sick. It was 23:00 by
the time he was completely asleep. For the last hour
I had to take my book and some toast and sit outside
the door to his room. I could not leave him because
there are three lines going over the side of the cot
with not much spare length for him to roll about.
This means that every time he moved about I had to
check that the lines were not pulling but also meant
that he would not settle since I was hovering.
Alex did sleep well after that with only 5 or 6
sudden awakenings. He did keep throwing, not
dropping, his dummy out of the cot. The dummies that
touch the floor have to go into a milton solution for
20 minutes. A pain at 2:30 in the morning.
Tuesday 31 August 2004 ( Day 5 )
Last day of this session chemotherapy. He's been
pretty sick during the night. The yellow chemo that I
can never remember the name does hit him hard. I
watched the line turn from yellow to clear as the
last of it was flushed through, a few minutes later
you could see he was much more comfortable: less
screaming, more smiling.
Kirsten was at work so my Mum and Dad came in to help
look after Alex. My intention was to go to Eckersley
House and do some work. Too tired to think after a
broken night, I just managed to reply to a couple of
emails and sleep for an hour.
Alex was unsettled all day. He's on three different
anti-sickness medications, one of which is a steroid.
The steroid seems to be making his face and head
itch, to stop him scratching the nurses gave him
piriton. He still has a few scratches on his scalp,
nothing that will scare but he must have been is some
discomfort. Kirsten said he was scratching his tongue
when the chemotherapy and anti-sickness drugs first
I told Kirsten that she should stay at home for that
evening and my Mum and Dad would come to take us home
once his chemo had finished the next day, but Tom
insisted that he wanted to see Alex in hospital so
she brought him over. Alex was already asleep when
Tom arrived and Tom had forced himself to stay awake
in the car. He came into the room were Alex was
asleep and climbed on top of me and fell asleep
Tom and I slept in Eckersley House and left Kirsten
to look after Alex. She was tired from a long day at
work and was not looking forward to a broken sleep.
Wednesday 1st September 2004 ( Day 6 )
Kirsten did have a broken sleep. Alex was sick during
the night and seems to be in pain with wind. Lots of
it. Tom was really interested in the playroom but
every time Alex cried, Tom would rush over, stroke
his head and say "Or-wite Alex , me here"
We knew we were probably going home sometime during
the day so we clock/pump watched. The pumps that
administer Alex's chemotherapy through the drip have
the rate and amount left to go on the front. It was
going through at 4.5ml/hour and first thing in the
morning had 6ml's to go. After that it needed
flushing with the same rate for three hours. I just
wanted to crank up the rate and get him home.
Finally we loaded the car and took him back to Joan
and Davids since Kirsten needed to do some shopping
in Ilkley. Alex was not in the best of moods all the
time we were there, even with the best efforts of the
four adults in the house. Tom was told he was going
home with Mum, Dad and Alex but woke to find himself
in Nanna's house so he was not too pleased either.
After tea we took Alex and Tom home. Alex fell asleep
within seconds of starting the car and was loaded
straight into bed at the other end. Tom stayed up
watching Thomas the Tank Engine in the dinning room.
He crept though to watch Indiana Jones with us but
ran up to bed when the snakes came on the screen.
Thursday 2nd September 2004 ( Day 7 )
Alex woke four times during the night. He has finally
stopped with the runny diarrhea but now is passing
some sort of industrial grade glue. He was retching a
lot and I stopped his drip feed at about 5 to see if
that would help. He was having anti-sickness into his
feed line during the night to but that did not stop
In the morning Kirsten took Alex to Joan and Davids
and Tom to school. Shortly after he arrived, Alex was
heavily sick so much so his feed line came up from
his tum and out of his mouth. It was for a while
going in though his nose and out between his lips.
This must have really upset him.
I called the hospital and arranged for the nurses
from Airedale to go to Joan and Davids to fit a new
NG tube (feeding line). They were nice enough to come
past our home to collect the spare tube that Ward 10
had given us for just such an occasion. Alex now has
a nice new feed line.
After the trauma of a new line, he slept for a few
hours and then just flopped in his cot for another
few hours. When Kirsten took him out, he was very
lethargic and just sat. We were warned this might
happen since the level of red blood cells would be
dropping and we were to ring the hospital. Nurse Mark
advised us to come in to have him checked out.
Since Kirsten and family, including Tom, are going to
Aunt Sally's wedding the next day, I took Alex in to
Leeds. We arrived at about 19:30 and Alex, after an
hour of making sure we all knew he was poorly and a
few bouts of being sick, was seen by a doctor who
admitted him because he looked so bad and was a
Alex spent the night on a saline solution drip. I was
hoping that he might have a little more energy in the
morning and since his temperature is not high, we
could go home.
He woke himself several times during the night with
diarrhea and retching but slept well in-between.