Tuesday 3rd August 2004 ( Day 1 )
His drip feed was removed at 01:30. He's not allowed
anything but clear fluids until 07:00 then nothing
till after the operation.
We managed to get the car packed by 07:00 and set off
back to the hospital. Alex happy and alert in the
back. We have been put back into Room 18, which is
familiar to Alex. This may be a good or a bad thing,
not sure how Alex is with coming back into hospital.
The operation to remove a sample of bone marrow and
spinal fluid went smoothly. I was at work but Kirsten
said he was very floppy as he came out from the
He's eaten very well today. He drank nearly a litre
of orange squash between 18:00 and 21:00. Full
nappies were flying off at quite a rate. More Nanna
and More Gramps (my Ma and Pa) have arrived back from
Spain after a 4 day drive. Alex was quite excited and
after a short sleep decided to wake again to play. He
finally went to sleep at about 22:00.
Kirsten has gone home so it's just me and Al tonight.
He's started the second cycle of chemo. No side
effects yet of course but I'm paranoid now.
Saturday 7th August 2004 ( Day 5 )
Kirsten had not slept all night. There was another
little boy, Lee, brought in as an emergency at around
midnight. The staff switched all the lights on in the
bay waking Alex and Jacob. After the lights went off
Jacob kept calling for his Mum and Alex woke again
Since Alex's treatment is going well and he is eating
and drinking well, he does not need a drip during the
day. We were allowed out of the ward for the day. We
picked-up Tom and Andrew and went for a picnic in
Ilkley park. It's was very sunny and very hot. Evil
Uncle Jonny travelled from London for the day. Andrew
looked after Alex, while Jon spent most of his time
with Tom. Water fights and loads of food and ice
cream later and we had to make our way back to Joan
and Davids for some shelter from the sun. Alex had a
sleep and Tom paddled in a pool in the garden. We had
to be back for 17:00 so Alex could receive his chemo.
Kirsten was still tired from not sleeping last night
so she disappeared for a long bath and an early bed
at Eckersly House. Alex finally fell asleep at 22:00.
Sunday 8th August 2004 ( Day 6 )
Alex slept well through the night, even with Lee's TV
on until very late and Jacob shouting for his Mum. He
must have been very tired because he did not even
stir when the cuff tightened to take his blood
pressure. Once I woke to see just white, it took me a
few moments to realise that it was Nurse Julie's bum
filling my vision. Sorry Julie, it's not that you
have a big bum just that it was very close!
Alex even woke with a smile. We tried to play quietly
so that Lee and Jacob were not disturbed but Alex had
the worlds biggest poo that overflowed his nappy and
spread about the cot. This was rather upsetting for
him and me. It was difficult to change the sheets
because the curtains around our beds are close and
there's no-where to put Alex apart from the cot.
Julie came to the rescue before I got too tangled.
The proximity of the curtains means that it's not
easy to unplug his pumps and take him to the
playroom. I waited until I could hear the others
stirring then took Alex out. It was very warm so we
took a trip to Eckersley House to find Kirsten. She
had gone round the other way and was up at the ward
waiting for us.
Alex was well enough to be allowed out again so we
travelled back to Ilkley to join in the Fun in the
Park event. Alex loved it. Tom loved it too and even
looked after Alex. Tom pushed him on the swings and
hugged him when he cried. Very sweet.
A quick visit to Charlie's house for Tom to show
Charlie his new toy and then back to the hospital
in-time for Alex's Chemo. Tom stayed with me in
Eckersley House. We all had tea in the hospital cafe.
Alex does not need a drip tonight, there's no chemo
that requires it. This meant that Alex could come
down the the cafe with us. Still with an appetite, he
ate most of my food.
Monday 9th August 2004 ( Day 7 )
Alex and Kirsten had another bad night but at least
they had some sleep. Alex was up and screaming before
6. Kirsten felt he was disturbing the others in the
bay so took him to the playroom. Because he's been
very crotchety, they've taken him off an
anti-sickness steroid which can cause mood swings.
Tom watched TV until he dropped after 22:30. He moved
around the bed all night, making sure that once I
became comfy he put a foot on my head, kicked me in
the goolies or put an elbow on my shins. We surfaced
at about 7 and played in the playroom at Eckersley
House not wanting to disturb Kirsten and Alex.
Alex, though he did not have much sleep, was still
well enough to go out for the day. We dropped Tom off
at school and then went home to find that the cat had
pooed a few times in the playroom and a big shelf had
fallen down in the kitchen. So much for ensuring a
clean house to come back to.
It was ward round so we battled Leeds traffic to get
back to the hospital by 16:30 to see the consultant.
He told us that Alex is doing well, the marrow test
from Tuesday showed that he is in complete remission.
He may be able to go home after the end of this
session of chemo (Wednesday) if he has no infection.
They are expecting an infection sometime during the
weekend so we probably will no have much time at
After tea, Kirsten disappeared back home for a well
deserved rest. As Alex slowly fell asleep, Emma,
Jacob and I watched a film until late then went to