Tuesday 10th August 2004 ( Day 8 )
Alex slept well until 02:30 when he woke as one of
the other kids drip pump alarms went off. He was
unsettled for several hours until I asked for a
sedative. He slept for an hour when at 6 he woke and
was sick. Unfortunately he was sleeping on his back
which meant he choked badly on his sick waking the
other kids and covering his bed and my clothes in
After tidying up, I took him off to the playroom to
give the others a few minutes peace. In there he was
sick again and also had bad diarrhea. He was not
doing too well. We had a bath while the playroom was
cleaned. A few trips down to to see outside the ward
with Jacob and a bit of a play in the cot and the
playroom. Alex fell asleep at 12:30, about 30 seconds
(not kidding) before Mum came to look after him.
They start him more anti-sickness today. Not steroid
based but it should make him settled at night. That
would be nice.
Alex fell asleep at 21:00ish, in-time for us to go to
the parents evening in the playroom. Wine, beer,
other parents. It was a chance to talk to other
parents we had not met or not seen for a few weeks.
One poor lad has been in intensive care for a week or
so. His parents have been told to expect the worst on
numerous occasions. Last Friday the consultant told
them that their lads chances of surviving the weekend
were low. He did but is still critical.
Most of the evening was light banter and finding that
we have somethings in common with others there. After
midnight I escorted Emma and Kirsten back to out bay,
both had had one or two too many. I, as the sober
one, went back to Eckersley House to get a good night
Kirsten and Alex had another restless night, even
with the new anti-sickness drugs. I arrived at 8 and
they had just gone back to sleep. Poor Emma was
already up the Jacob and Tracy was trying to get a
few minutes of peace after being kept awake by Alex
most of the early hours.
Wednesday 11th August 2004 ( Day 9 )
The doctor cleared Alex so we could go home. His last
chemo of this cycle was the night before and the
other medicines (anti-sickness, potassium, sedative)
we can give via his feed line (called an NG line).
These medicines were issued to us and we raced to the
car, hoping it would start this time.
Alex was really excited to be home and seemed really
well for someone who just finished chemotherapy. He's
walking well, padding himself round the house finding
things to break or put fingerprints on. He had loads
of fun so we did not stop him. Alex was even happier
when Tom turned up with Joan and David. Alex mostly
wanted to follow Tom about, even into the garden.
Everyone was still washing their hands with alcohol
gel and sterilising everything before he put it in
his mouth but it's difficult with so many people.
Alex does not ask before chewing on something from
the floor. He's in the "If in doubt, stick in gob"
faze that lasted about a year with Tom.
Neither Tom or Alex wanted to go to bed on their
first day of parole. So we had to energetic kids
until nearly 23:00. Alex was very restless overnight.
We tried turning down then off his drip feed with no
success. Eventually, at 02:30, I gave him more
anti-sickness and sedative. This eventually worked
and he fell fast asleep until about 05:30. During
this time I started his feed again.
Alex's temperature through the night stayed at 36.8C.
At 37C we are to give the hospital a ring, at 38C we
definitely have to bring him in.
Thursday 12th August 2004 ( Day 10 )
Both lads were up at 6. Alex was in pretty good
spirits but had puffy eyes. Kirsten took Tom to
school and Alex to her parents so I could get on with
some work. At Joan and Davids, Alex had a temperature
of 37C so Kirsten called Ward 10 who told her that
he's not neutropenic (unable to fight infection) so
monitor his temperature every half hour. It did not
go near the danger 38C and actually went down to 35C.
We were packed and ready to set off for hospital
Since Alex was not happy with the feed through his
drip during the night, Kirsten rang the nutritionist
to find if we could give him the same mixture in his
milk bottle. He can do that if he will take it but
it's not make for flavour since it should go direct
to the tum bypassing taste buds. He is still eating
well during the day.
Tom was asleep when he arrived home but Alex, as
usual, was wide awake. Alex tired himself out
sprinting round the floor until 20:30. Tom woke up
shortly after and watched TV on his mum's lap till
Friday 13th August 2004 ( Day 11 )
A late end of the day yesterday but a relatively
quiet night. Alex woke about once an hour but was
easily placated with his dummy. He eventually woke at
8:30 at the same time as Tom. Kirsten was needed at
work so she took Tom to school. Alex stayed with me
at home. One day I'll have a day to do some work
My Mum came round at 11 to look after Alex. He
temperature at that time was 36.5C. During the
afternoon Trish the community nurse came round to
introduce a local nurse from Airedale that would be
taking Alex's blood samples at home if he's here long
We are trying to lower the amount of anti-sickness
that Alex is taking so he had none at lunchtime when
he would normally be due but he did have the usual
His temperature steadily went up during the rest of
the afternoon. By the time Kirsten was home at 16:30,
his temperature was 38C. We rang the hospital and
they said to come in. We packed all the bags and
re-checked his temperature just before leaving. It
had gone down to 37.5C. Another call to the hospital
and they now said to monitor his temperature closely.
Alex went to bed with a temperature of 37.9C.
Tom was really clingy and wanted us to sit in bed
with him. Every time we tried to get him to sleep, he
cried and woke Alex. After a while I told him that if
he keeps waking Alex then Mum, Dad and Alex will have
to go back to hospital and Tom will have to go back
to Nannas. He then demanded to go back to Nannas.
Damn. He's always been so close to his Dad, since
coming back from the hospital he mostly wants his Mum
or Nan. May be we'll be close again after all this is
over. I hope so.
Saturday 14th August 2004 ( Day 12 )
Alex became restless just before midnight. He did not
settle, even with sedative and at 2 I called the
hospital. His temperature was lowish at 37.1C but
they said that a doctor really should see him.
I stayed with Tom and Kirsten took Alex, via Ilkley
to pick-up her mum, to Jimmy's. They took blood to
test and found that he was very neutropenic. This was
surprising since it should be a week (day 15 onwards)
after chemo finished that his immune system is this
When they arrived at hospital Alex's temperature was
at 38C but soon rose to 39.2C. Kirsten said that he
really quickly became very poorly.
Alex was given a double does of sedative, put on a
hydration drip and he also started a blood
transfusion. The on-call doctor was unhappy that he
was still very unsettled and wanted to stop the
transfusion. The blood service said that the symptoms
of rejection would be much more pronounced so Alex
was left to complete the total bag of blood.
By this time (about 6:00) Kirsten had had no sleep
all night and was stressed from worry about Alex.
Note that the car was playing up again on the was to
hospital even after nearly Â£800 of repairs last
week. She's dealing with it really well. Joan was
really tired to after a rude waking at 2:30.
My mum came to pick me and Tom up at 8:15 to go to
Tom's swimming lessons. Tom really enjoyed it and had
a great time. Even swimming by himself. At one point
he was jumping in and did not want me to catch him. I
asked it he touch the bottom, to which he replied "No
me touch my bottom, me touch with my feet". No answer
to that really.
My mum and dad took Tom for the weekend. David drove
me in to the hospital to take over from Joan and
Kirsten. Alex was asleep when we arrived at 11 and
slept until 18:30.
His eyes are really puffy, in-fact his whole face
looks swollen. The pillow is wet since his mouth will
be very sore and it's watering a lot. Lets hope h's
not teething too.
Alex finally fell asleep despite all the noise coming
from two TV's in the room after 22:30. He was quite
restless, waking about once an hour for a few
minutes. At 2 I asked the nurse for some sedative
because Alex was waking more often. After that he was
back to the hourly wakings.
Sunday 15th August 2004 ( Day 13 )
I had to wake him at 8:30 to change his nappy. Still
a bit sleepy, he played in the playroom for a while
before having diarrhea everywhere. Yuck.
Visitor on Sunday were Joan, David, Clare Walker,
Mum, Dad and Tom. Alex fell asleep just after Joan,
David, Clare and Kirsten appeared at 11ish. He's
still on antibiotics and his temperature is settling.
The antibiotic protocol that he is on consists of a
wide-spectrum antibiotic for the first 48 hours,
then, if his temperature is still high, a different
set of antibiotics and if his temperature still does
not come down, an anti-fungle. There has been
instances of chicken pox at Tom's school so Alex has
had to have a anti-viral injection too. It's been 48
hours and his temperature is stable if not low so the
doctors are just waiting to see what happens next.
After lots of playing and lots more diarrhea, Alex
fell asleep at 21:30. Kirsten's looked after him over
Monday 16th August 2004 ( Day 14 )
I found Kirsten wide awake with Alex asleep on top of
her at 9. She said that they managed to get about 3
hours sleep and that he is teething. Diarrhea, bad
moods and dribbling - Alex too, which means he's most
probably teething. In his situation it's the more
complex things we look for when he seems a off form.
In this case it's probably a combination of chemo,
neutropenic, teething and tiredness.
Kirsten disappeared off to work and I almost
immediately stood on his Hickman line pulling it out
of his chest by about 3cm. It must have hurt and he
let me and the rest of the ward know it. Nurse Mark
tested the line and it it still working OK but
ordered an x-ray just in case. Kirsten then returned
to say the car had broken down. Again. So much for
the Â£800 we spent last week.
The AA man said that it was a problem with the
crankshaft monitor - the one that was replaced by
Vauxhall last week. He towed the car back to the
garage in Keighley and took Kirsten back to her
The x-ray showed that the Hickman line is still in
place. When the consultant came round he said that it
will need to be changed just in case it failed during
an emergency. Alex is still pretty chubby so finding
a vein with-out the Hickman line is very hard. As we
know from his first few hours in hospital.
My Mum and Dad come over to give me a break. It would
be nice to do some work but I was needed back to see
the consultant who comes round every Monday to chat
to the parents. After that Mum played with Alex while
Dad and I went off for a pizza.
Alex would not go to sleep. As usual his was
disturbed by all the usual noises in the bay but was
very tired. The nurse gave him some sedative and he
was asleep after 15 minutes. During the night he
drank over a litre of squash and I had to change his
nappy 5 times. Luckily there was no diarrhea.