Tuesday 17th August 2004 ( Day 15 )
Early rise at about 6 and a quick escape before his
crying disturbed the other three kids and parents.
Unfortunately his drip stand was blocked by Luis's so
lots of clattering, banging, crying and swearing
later and the bay was at peace again.
Alex played until 11. Really happy and energetic,
stomping up and down the corridor, painting and
drawing (mostly on himself) and watching the other
kids in the playroom. Just as he fell asleep, Mum and
Dad arrived to allow me to do a little work.
David drove over to see how Alex was doing and chat
about Tom, who is getting a bit mixed up with all the
switches around. He sounds a bit upset and I'm not
surprised, he must think he Mum and Dad like Alex
more. Not true, Tom is just as important but it's
difficult to tell a 3-year-old that. Especially when
we don't have much time with him.
Alex woke for lunch and ate well, lots of macaroni
cheese and a bit of ice-cream. Then went back for a
long sleep in the afternoon.
Kirsten came back from a long exhausting day at work
to take over from me. She was tired but still looked
after him all night...
Wednesday 18th August 2004 ( Day 16 )
The night sounded terrible. Alex did not settle and
at 3 Kirsten took him to the parents room to let the
other kids have some sleep. Lots of gentle love and
sedative persuaded him to sleep.
I found Kirsten wide awake with Alex asleep on top of
her, on the sofa in the parents room at 7. She went
to have a rest and Alex slept on my lap for a while
During the night, Alex had pulled out his feeding
tube. This meant that a new one had to be put back
in. Poor Rachel was looking after us. She was the
nurse who put Alex's first feeding tube in and she
hates doing it. Alex screamed and choked. Not the
nicest thing for a little chap to have to go through
but if it makes him better in the long-run, I, along
with Kirsten will hold him down like that as many
times as it takes.
Joan and David came over for most of the day. I think
David was a little disappointed when Alex was asleep
for hours! All this was in to hospital to hear Alex
snore. He did wake for a touch of lunch and later in
the afternoon, we walked David and Joan back to their
car. It's the first sunshine Alex has seen for days.
Best laid plans of mice and men. My parents were
going to drive over to the hospital, take me home to
collect the motorbike so I could go into work the
next day. We were told that since Wednesday is the
last day of his anti-antibiotics and he has a stable
temperatures, he could go home the next day. So Mum
and Dad just came for lunch.
Since his stupid dad managed to stand on his Hickman
line and pulled it out of his chest by a few cm, we
had been told that it would need replacing in surgery
on Friday. His blood counts are still very low so he
is not fit enough to be put under a general
anaesthetic so this may happen next week now. I hope
nothing goes wrong with his line or I will feel
rotten, not that I feel good about it now.
Kirsten and I played with Alex until about 20:30 when
eventually he settled down and went to sleep. Alex
was quite unsettled, as always in the bay. No
diarrhea, which if he had had loads would mean he
could not go home.
Thursday 19th August 2004 ( Day 17 )
Alex woke fully at 6 so off we went for our usual
early morning trip to the playroom. Lots of toast for
breakfast and still a stable temperature.
The doctor OKed us for departure and off we went.
Alex and Kirsten went to Joan and Davids house for
the afternoon so I could do some work. Unfortunately
there had been a storm yesterday and it cut power to
my computers and the broadband/telephone connection
was down so I could not connect to work.
Kirsten brought Alex back home at 16:00sh. He was
full of energy and stomped around the house for
hours. He ate a good tea and went to sleep quite
early, at 19:30. We are having the roof mended at the
moment and the tiles have been removed above Alex's
bedroom. There's just a plastic sheet stopping the
heavy rain coming in. It's quite noisy so I was
surprised that he slept until 3 and tolerated his
overnight drip feed well. At 3 I changed his nappy
which woke him up. To get him back to sleep Kirsten
took him into bed with her and I tried to sleep in
Friday 20th August 2004 ( Day 18 )
We all woke when Joan rang just before 9. I had no
idea that we were all so tired. Not such a broken
night at in the hospital but the break from sleep
that we had was quite long.
Kirsten and Alex went over to Joan and Davids for the
day. Tom was not going to play school because he was
showing signs of real unhappiness. He has been
confused and sad for a few days. We're not sure if
Tom stay with us while Alex is at home, if we have to
go back to hospital soon (a very good chance of that)
Tom will just be messed around again. Is it better
for him to stay for as little as 24 hours or should
we not tell him we are home?
Anyway, it sounds like they had a great day. Tom,
Alex, Andrew and Kirsten went for lunch at the cafe
at Storiths. The cafe has an upstairs full of model
trains, some of them go round the room when you press
a button. One of Tom's favourite places. Then on to
the sailing club at Embsey for a quick walk. Finally
back for a play and kip at Joan and Davids.
My Mum and Dad looked after Alex that evening while
Kirsten and I went to the local cinema to watch The
Village. We had the mobile on silent ring but visible
through the whole film, just in-case. Alex had just
spent the whole evening running round the house and
finally crashed just before 22:00.
He slept quite well now with a low temperature. After
last night I was worried about changing his nappy in
the early hours but it needed to be done. He went
almost right back to sleep, no problem. His nappies
are always full when he's on a drip feed.
Saturday 21st August 2004 ( Day 19 )
Tom and I had a busy day: swimming at 9 plus Eureka
Kids Museum, Halifax ski centre and watching model
aircraft with my Mum and Dad.
Joan, David and Andrew came round to our house to
help look after Alex and help Kirsten with DIY
things. Alex has been in a bad mood all day. Maybe he
knew that Tom was coming home.
We brought Tom home after his day out, just because
we miss him. He'll probably go back to Joan and
Davids during the week, just to keep a routine but
for now he's ours again.
Tom loved being back home. He loved playing with Alex
(though Alex was not quite so happy about it). Tom
even fed Alex his sweets and dinner. When I was
changing the dressing on Alex's feed line and Alex
was screaming, Tom ran into the garden to fetch his
Mum. Kirsten came running since Tom was so sure
something was wrong.
We kept both lads up until they fell asleep. Hoping
for a long sleep.
Sunday 22nd August 2004 ( Day 20 )
Sunday started quite late. Both boys woke at 7:30 and
were very happy and in a mood to play. We met Andrew
and Clare Walker at the sailing club at Embsey. I
wanted to take Tom out for a sail but it was a race
day so we could not go onto the water until 13:00 so
we went to Tom's favourite cafe (the one with the
model trains) at Storiths. Tom and Alex were still in
really good moods, laughing and playing.
After lunch we went back to the sailing club and I
took Tom sailing. Alex watched, even if he was not
poorly, it was a little gusty to take him out. Andrew
and Kirsten also went out on the water.
When I was out by myself, I could hear shouting.
Kirsten, Andrew and Claire were all trying to get my
attention so I knew there was a problem. Alex's
Hickman line had dropped out. Note this is the line
that goes directly into a vein in his neck and allows
blood to be taken and meds to be given without
We were all thinking "Oooh heck" or something along a
similar vein. Frantic calls to the hospital and they
did not seem concerned unless his platelet count was
low. If Alex was bruising lots and they were not
clearing up it meant that his platelet counts low and
he could have internal bleeding. Not that we wanted
to bruise him to find out. We had been following the
progress of he bruises just to cover this possibility
and we don't think there was a problem.
Since Alex did not seem to be in imminent danger, we
packed-up the dingy and took the kids to Skipton
Castle. Tom ran off almost as so as we got into the
castle. He took turns towing Andrew, Claire, Kirsten
and myself round the rooms and dungeons looking for
dragons to shoot. At one point he read a sign out
loud "mumble mumble mumble shoot dragons mumble
mumble mumble" which is an interesting interpretation
of "You Are Here".
After hours of running round and all the dragons had
been thoroughly shot so, as all good knights do, we
went to Nannas for a roast dinner.
Both lads were completely shattered by the time we
arrived home but both fought sleep until quite late.
Alex is now much better, he seems quite happy most of
the time. Compared to this point in the last cycle,
he's in much less pain with no bloated tum and he's
tolerating his overnight feeds well.
Monday 23rd August 2004 ( Day 21 )
Kirsten went to work and took Tom to school. Alex had
woken in a little discomfort and did not want his
breakfast. Mum and Dad came round to look after Alex
while I continued to sort out the cellar and do some
Evelyn and another nurse from Airedale came round at
14:00 to take Alex's blood. I thought it would be
very difficult without the Hickman line because last
time I saw blood drawn directly from the vein was the
day Alex was admitted. At that point he had very
thick blood and a low platelet count so taking just a
small drop took hours and hours. This time the nurses
found a vein and took a few ml and were finished
within a few minutes. Easy.
After the results were ready (early evening) Rachel
rang from St James's to say he is progressing nicely
and he would probably have his Hickman line replaced
on Friday. In the same operation they surgeons would
also take bone marrow samples, a lumber puncture
would be performed and he will have a chemotherapy
shot into his spine. Another blood sample is needed
on Thursday to confirm.