Friday 17th September 2004 ( Day 22 )
During the night he woke a few times, the nurses
thought he may be in pain or suffering from morphine
withdrawal so Alex was given a small amount of
oramorph. Other than being broken by crying fits he
did sleep well.
During the morning, he became more puffy again.
Temperature was still OK in the mid-36C range but he
had waves of pain and screaming between sleeps. The
consultant and doctors think it's either the morphine
wearing off and his tum still being very painful or
the morphine withdrawal or both. A regular amount of
oral morphine has been prescribed and hopefully this
During the day he's had quite a few visitors David,
Joan, Andrew, Tom, my Mum and Dad, but he really
wants to be alone. The waves of pain usually happen
when he wakes up. Tom being Tom really wants to help
sooth Alex, especially when he's crying but Alex just
Geoff, a good friend of my side of the family, was
coming up to see Alex but the last I knew he was
stuck in an 8 mile tail-back on the M1 near
Northampton. Good luck Geoff, if we don't see you by
Sunday, we will send a search party.
At one point in the afternoon, Alex pointed to the
door, so Kirsten took him to the playroom where he
was interested in everything the kids were doing,
especially Tom's many activities. This is where we
noticed that he's really puffing up again. During the
evening he's due to receive diuretics to help loose
some of the excess fluid, previously this was not
possible because he had a high temperature and low
The plan was for Tom to go home with one of his sets
of grandparents but when told it was time to go Tom
became very upset. In the end I took him home, which
made him so happy he sang the whole journey. Very
good for my ego and moral.
Saturday 18th September 2004 ( Day 23 )
What happened? I leave Kirsten alone for the day to
take Tom out and she goes and swaps Alex for another
baby. I arrived back early evening and there was this
little smiling monster. I'm told he's been strutting
round the ward like he owns the place. He would not
go to sleep in the evening because he had a fit of
the giggles - for over two hours! It's really not the
same baby that was in intensive care just a few days
Sunday 19th September 2004 ( Day 24 )
Play. Sleep. Eat. Poo. Play. Sleep. Eat. Poo. Play.
Sleep. Eat. Poo. Play. Sleep. Eat. Poo. Play. Sleep.
Monday 20th September 2004 ( Day 25 ) - Happy
Sleep. Play. Poo. Eat. Poo. Play. Poo. Eat. Poo.
Play. Poo. Eat. Poo. Play. Poo. Eat. Poo. Sleep.
Tuesday 21th September 2004 ( Day 26 )
Alex had an sample of bone marrow and a lumbar
puncture done under a general anaesthetic. Instead of
the usual trip down to theatre, this operation was
done in the treatment room on Ward 10. Alex was given
a white creamy substance into his Hickman line then
just went limp. 15 minutes later he was back in bed
and in a bad mood.
We have been told by the consultant that the bone
marrow taken at the end of the last cycle had traces
of a marker on some of the cells that may indicate
that the leukaemia could still be present deep in the
marrow. Our consultant is pretty sure that it is not
but to be sure a team of consultants and specialists
is due to review all Alex's bone marrow samples in a
meeting on Thursday. We will then be told the news
either by phone or in clinic on Friday.
Mid-afternoon, Alex was freed from all his drip pumps
and released to wander round. It was like letting go
of a caged bird - he literally bounced off all the
walls. The staff on Ward 10 and PICU who saw him
slapping down the corridor or crawling under the
table in the playroom looked genuinely ecstatic to
see him bounce back so quickly. I believe that the
staff do care about the kids they look after, it's
not just 100% job to them.
One down side of looking so well is that we were
moved from the side room and into a bay. Kirsten's
turn on duty over night so she gets disturbed when
the others in the bay go bump, scream and parp in the
Wednesday 22th September 2004 ( Day 27)
It was not the other kids that made most of the
noise. Alex woke him self by being sick at about 1.
They had to remove his NG tube because it was going
in his nose and coming out of his mouth. Under the
sticky holding it to his cheek, the skin was very
sore. For the next five hours, Alex was determined to
keep awake and play - trips to the playroom, walks up
and down the ward, play time with the nurses did not
tire him until nearly 6 when he finally fell asleep.
At 07:30 I had to wake both sleeping beauties because
we had an appointment at LGI for echo and electro
cardiograms. Surprisingly enough, Alex did not
complain, even about being dressed. I think he woke
fully once we were in the car. LGI was easy, no
queues, just in and out and back to St James's by 9.
Just after 10, Annette from the Ilkley Gazette came
to interview us with regards to the Autumn Fair on
Saturday. Alex was very tired by then and was not as
jolly and smiley as he has been since his bounce back
The ward was very busy with three new arrivals during
the last day or so. We needed a new NG tube and a
visit by the doctor before we were free to go.
Kirsten was too tired to drive so I had to leave the
bike there and drive her and Alex back home.
Kirsten went to bed as soon as we arrived. Alex woke
when I parked the car and just wanted to be picked
up. After an hour he became very heavy so I chucked
him in the rucksack and went for a walk to Cliffe
Castle. A walk that was not Ward 10 corridor and Alex
must have pointed at every leaf, squirrel, rabbit and
It's so much easier to get Alex to sleep when there's
a quiet room for him to go to. No nurses or other
kids. I'd almost forgotten how quiet things can be.
Tom stayed at Joan and Davids for an extra night just
to allow one night for us to acclimatise.
Thursday 23rd September 2004 ( Day 28)
Officially the last day of this cycle but since Alex
has had such a rough ride over the last few weeks,
the consultants want to give him a few days break. I
think his parents need it too.
Kirsten and I spent the day doing some work and
sorting out the paperwork. After months of letting
most of the letters and bills pile up, there is a
surprising amount of phone calls and payments to be
made. It's at this point that we are really grateful
to our employers for the support they have shown.
Hopefully this will all be over soon and we can get
back to full-time work.