Tuesday 24th August 2004 ( Day 22 )
Alex slept very well. He's had the best night yet
with only one early hours screaming when he lost his
Joan looked after Alex most of the day as I went to
work in York and Kirsten went to Ilkley.
We're still unsure whether to bring Tom back during
the week instead of staying at Joan and Davids. It
may be unsettling for him if we have to disappear
during the night back to the hospital if Alex
develops a temperature. Saying all that we really
want him around so he came back with Kirsten.
I rang the hospital and talked to nurse Mark who said
that we don't need to go to clinic in the morning
since he had a blood test on Monday and he's due
another on Thursday.
Alex seems like a normal one-year-old just now. I'm
sure people expect a really sickly child when the see
him but the only outward sign is his feeding tube.
For us it's an additional problem of a few
medications, taking regular temperatures, overnight
feeds and overt cleanliness. Not too much of a
problem but it does not allow us to have normal work
patterns and there's the added stress knowing that he
may still be infected anytime.
Note that even though Alex is looking well, he is
still neutropenic. A good description from
puts Alex in perspective...
The level of neutropenia may vary considerably. In
general, the blood of healthy adults contains about
1500 to 7000 neutrophils per mm3 (1.5 - 7.0 x 109
/1). In children under 6 years of age the neutrophil
count may be lower. The severity of neutropenia
generally depends on the absolute neutrophil count
(ANC) and is described as follows:
Mild neutropenia, when the ANC falls below a lower
limit of 1500 per mm3 (1.5 x 109 /1), but remains
higher than 1000 per mm3 (1.0 x 109 /1).
Moderate neutropenia, when the ANC falls between
500 per mm3 and 1000 per mm3 (0.5 x 109 /1 - 1.0 x
Severe neutropenia, when the ANC falls below 500
per mm3 (0.5 x 109 /1)
Alex's ANC is currently about 0.55 x 109/l and last
week was as low as 0.02 x 109/l.
I've just seen the bank holiday weather forecast on
TV: "Looking good" - great a nice long weekend and on
Friday Alex is due to start his next cycle of
chemotherapy. Well, anything to make him better.
Wednesday 25th August 2004 ( Day 23 )
We all slept in a little today. Tom was groggy but
still dressed for school. Alex marched around in a
good mood. Then once Tom and Kirsten had gone, he
went back to bed for a couple of hours.
At 11 my Aunt Tricia and David arrived to see Alex.
They had travelled up from Oxford to show support. I
think they were a little shocked by how well Alex
looked. Mum, Dad, Tricia and David took Alex to the
cafe at Cliffe Castle while the sun was out.
Then Alex went back to bed for an afternoon kip. It's
lovely to see how many people are touched by Alex and
how friends and family will go out of their way to
help and show support. Tricia and David driving all
the way for the day and of course Andrew nearly
jumping ship in the middle of the North Sea when he
first was told are just two examples.