Tuesday 5th October 2004 (Day 8)
Alex spent the morning at Joan and Davids so Kirsten
could go into work and I could
try to sort some of the back log of bills and
paperwork we now have.
Joan was taking Alex's temperature every 30 minutes
and she could see that it had jumped from 35.5C to
37.5C over night. Not quite the magic 38C that's
needed to drag him into hospital. Joan also noted
that Alex's hands and feet were cold - most likely a
sign of infection. I rang the hospital, again, to ask
for advice. After an hour, Sister Rachel rang back to
ask us to bring him in just to let the docs have a
look. She was expecting to send Alex home later.
My Mum and Dad brought Alex back from Joan and Davids
and then took us all into St James's
Jolly had a cot waiting for us and now it's almost
like going home: Ward 10 is full of familiar faces
and friends. Murphy's Law came into effect and Alex's
temperature dropped to a nice 36.5C and his hands and
feet warmed up so the doctors were not worried.
Alex's bloods were taken anyway.
We all thought Alex's stroppyness was due to him
wanting to sleep but when he was put in his cot he
was sick again. When his t-shirt was removed the
sticky covering the exit of the Hickman line came off
to reveal a badly infected area of skin. Ash and Jo,
two docs, both agreed that Alex should start a five
day session of antibiotics and so Alex was properly
Kirsten came in early evening, by then Alex was in
bed with a temperature of 39C. Paracetamol was used
to bring us temperature down but he was sick again
shortly after it was administered. I asked if he
could have a more powerful anti-sickness and the
nurses agreed so he started on a course of
ondasetron. The doctors have also written him up for
stronger antibiotics. So here we are again, hopefully
for the last time.
I was going to stay over night but Kirsten sent me
home because I had a heavy cold and she wanted to
stay with "her little boy".
Wednesday 6th October 2004 (Day 9)
Overnight Alex was very unsettled and nurses and
other parents were volunteered to amuse him.
Eventually we fell asleep at about 1 only to wake
again at 5:30.
The surgeons are due to visit Alex today to look at
his Hickman line infection and the boil on his bum,
which it causing him a lot of pain. It would be very
unfortunate if the Hickman line had to be removed
because of the infection, they are also worried that
the boil may be an indication of a much deeper
infection since it's been there for weeks now.
Thursday 7th October 2004 (Day 10)
Report from Kirsten, since I'm not allowed in to see
him due to a heavy cold.... Alex fell asleep quite
late again. He was woken at about 7 by the other kids
in the bay getting up. They all seem to be early
The surgeons have been to see his line and bum and
all is positive. The antibiotics are working well on
his line and the infection is only local to the tube
exit through the skin and has not spread.
The boil on him bum is not getting any worse and the
microbiologists cannot grow any bugs from the swabs.
So the conclusion seems to be that it's not deep, a
surface infection that should clear up on it's own.
Kirsten did have visitors during the day but I had to
stay away. It seems like a month that I have not been
in to hospital. Kirsten says it seems like a month
since she's been home.
Friday 8th October 2004 (Day 10)
I was able to visit and saw at first hand that Alex,
who is still really immune-suppressed and suffering
side effects of the chemo, is lively and happy as
ever. He has been sleeping more than normal with a
couple of long sleeps during the day.
He's still on antibiotics until Sunday. All his
counts are as low as during the last cycle when he
was in and out of intensive care but this time he's
happy and lively, just sick about once or twice a
day. Indeed, just as I was about to go home, Alex was
sick and had to have yet another NG tube, number 14 I
During the afternoon, a little girl, Hayleigh, next
to Alex had to have her first NG tube fitted. She was
warned that it will feel funny as it goes up her nose
and down her throat. When the procedure started it
went something like this....
Nurse: "OK relax this will only feel uncomfortable
for a second."
Hayleigh: "No please, I'll do anything, PLEASE."
Nurse: "We'll be able to give you that horrible
tasting medicine without you tasting it, now here we
Hayleigh: "I'll take the medicine. PLEASE NO!"
Followed by about 30 seconds of screaming like she
was being murdered.
Nurse: "OK Hayleigh," (the nurse had to shout over
the screaming) "it's done."
Hayleigh in a very quiet voice: "Thank you."
Saturday 9th October 2004 (Day 11)
Alex is really quite full of energy. After swimming,
Tom and I drove to hospital. The doctors have said
that his fluid balance is good and does not need to
be on a drip after the antibiotic has gone through.
Free Alex, Tom, Kirsten and I met Andrew, David and
my Mum and Dad at Rico's Italian Restaurant for lunch
then went for a nice walk in Roundhay Park. Both Alex
and Tom were in heaven.
Mum and Dad came back to the hospital for the
afternoon and looked after both Tom and Alex there
while Kirsten and I popped off to the cinema to see
Bride and Prejudice. Not one of our favourite films,
it's could do with less singing, more story but what
do I know.
Kirsten stayed yet again overnight with Alex, a
monumental effort since she's in a bay. I stayed over
for four nights when she was ill but we had a side
Sunday 10th October 2004 (Day 12)
We were hoping that his blood count would be on the
way up today and this would be the beginning of the
end for the worst of the treatment but it's not time
yet. Yesterday Kirsten was excited by a rise in his
neutrophil count from 0.03 to 0.06. The right
direction but unfortunately anything under 0.1 is
never very accurate since it's a bit like heart rate
where it's up slightly one second and down the next.
When it jumps to 0.5 or higher, I'll be happy.
Today it's back down to 0.02. Poo.
Tom and Alex joined the other boys on the ward
trashing the playroom. They really did a good job
too. Kirsten went home just after lunch and Joan,
Andrew and David came to help with the boys later in
the afternoon. They kidnapped Tom who wanted to stay
with his Dad and Alex but 1 monster + 1 monster does
not add up to twice the effort but much much more.
My Mum and Dad are currently fussing over a freshly
awake Alex and talking to me as I try to write this.
Right I'm off for a tea.
Monday 11th October 2004 (Day 13)
The day we finally go home? The antibiotics have
stopped, his temperature is down. All looks rosy. But
look yonder, in the afternoon, what could that be?
Not another high temperature? 'Fraid so.
Alex had quite a good sleep last night, finally
flopping at about 22:00 with only a few breaks for
nappy changes and temperature observations. He woke
before the rest in the bay at 07:30 so I wiped him
off to the playroom before he could wake anyone.
His bum and Hickman line were obviously giving him
discomfort but he still had energy and wanted to
play. I was all for packing the bags ready to go home
until his blood counts came back and Doc Tim came in.
His "line site" (the bit where the Hickman line goes
through his skin,) was looking even more infected and
there was a bigger lump on his bum where the boil
was. All this and his temperature was up to 37.5C,
just enough to start worrying everyone.
Platelet and full blood transfusions were given
during the late morning and afternoon. This could
have been reason for the higher temperature.
The consultant and a gaggle of doctors came to visit
for Ward Round and confirmed that he will not be
going home and will start a set of antibiotics asap.
Just after the antibiotics were attached, Alex
started shivering. We have been warned that this
could happen. His temperature also went up to 38.9C
for which he was given paracetamol to bring it down a
It's taken quite a while, plus pain killers, to get
Alex settled this evening. His bum must be really
hurting because he can't seem to find a position that
is comfortable. The shivering and high temperatures
are not conducive to a happy baby.
It's 21:53 now and he's just gone to sleep. If he's
unsettled during the night, the nurse will give him
morphine to help. Night night everyone.