Friday 10th September 2004 ( Day 15 )
During the night Alex was pretty sick. He received
diuretic that made him "pee for Britain" (quote from
his nurse) and helped balance his fluids. When we
arrived at 8, his heart rate was down to 150 and his
colour much better. The PICU team were very positive.
Alex did try to play but with nine lines going into
him and not enough energy to move much, he quickly
became tired and ratty.
My Mum and Dad, Joan and Dave plus Andrew came in to
visit. My Grandparents wanted to come in also but we
have a full house already and Alex was finding it
hard to settle with so many people around.
There was talk of him going back over to Ward 10 but
the consultants just want to be sure he is stable so
another night in PICU is predicted.
Saturday 11th September 2004 ( Day 16 )
Another night much like the one before. Tom and
Kirsten were at home. Kirsten is entertaining Tom
because he should be having fun at the seaside in
Spain but as things worked out, it's better that
everyone is here.
When I arrived in the morning Alex was in exactly the
same position as when I left him. Usually he rolls
and turns in his cot and ends up somewhere other that
where we left him. He's still so lethargic, no
interest in sleeping or playing. I managed to
entertain him a little with a few books and a wooden
toy with animal pictures on. He was more receptive to
Andrew when he showed Alex the same toys.
Babara and her dad, Vin, came to say hello. Thanks
for the biscuits. There's not much to see when Alex
is this poorly so they did not stop long.
Around 15:30 Alex was moved back to Ward 10.
Jonathan, a nurse from PICU, cam with him since they
are short staffed on Ward 10. Just after the move
Kirsten and Tom came back. Tom really wanted to help
make Alex better but Alex just wanted to left alone.
He did seem to like to watch Tom play, though but
would not sit up and was still being sick every hour
We all watched a film in our room, broken quite often
but either Alex being sick or Tom wanting toast.
Kirsten took Tom over to Eckersley late evening.
Alex was settled for a few hours until about 23:30
when he was sick but did not go back to sleep
afterwards. He wanted something and was pointing
around the room and screaming for hours. He bed ended
up covered with toys, bottles and most other things
in the room while I was trying to understand what he
wanted. After hours and hours (sometime about 3:30) I
gave him a small drink of juice. I had to ask the
nurse first because he is nil by mouth. The juice
just rebounded off his tum and back up again but
still he wanted more. I tried him with another drop,
which had the same effect.
The rest of the night was short sleeps followed by
Alex crawling (for the first time in 9 days or so)
around the cot, screaming. Now it was obvious what it
was but he was not allowed ant more juice so I just
had to put up with the screaming. The other people on
the ward must have thought I was torturing him all
Twice during the night he had nappies with quite a
bit of blood in them. I'm told this is due to being
neutropenic and is expected but it's still not nice
Sunday 12th September 2004 ( Day 17 )
Kirsten and Tom came in just as nurse Jo and I were
putting him in a pushchair as an attempt to quiet him
down. He must have been exhausted by then. I was.
I took Tom to the playroom and Kirsten with a quiet
Alex followed. His been mostly calm and drank another
bottle of juice. His tum did reject it again but he's
looking a lot better. His temperature has dropped
from fever (39C) to nearly normal (36C). His left
hand is still much colder and more mottled than the
rest of him, because of this he will have an
ultrasound of his arm and neck tomorrow to find if
there are any blocks in his circulation.
Alex slept most of the afternoon. My Mum and Dad
looked after him while Kirsten, Andrew, David and I
took an extremely hyperactive Tom to Tropical World.
Alex is drinking quite a bit now but still seems
uncomfortable. The morphine, anti-sickness,
anti-biotics, anti-fungus, anti-cramps are still
being pumped into him all the time but it's nice to
see that he is fighting for himself and obviously
wants to be better.
One of the really bad part of staying in hospital
most of the time is saying goodbye to Tom. He was in
such a fantastic mood until is was time for David and
Andrew to take him away. He was almost begging me to
stay here and sleep in Mummy's bed. When I waved to
him once he was in the car, Tom would not look at me.
Alex was very calm during the evening, not quite
asleep but not moving either. His temperature stayed
down at around 36.5C but his breathing rate was still
high at about 60 breaths per minute.
Monday 13th September 2004 ( Day 18 )
Kirsten and Alex had a very unsettled night. Alex
seemed in pain most, which Kirsten thought was
Alex's temperature was still down but he still did
not have any energy to move. It was hard work just
getting him to point at a book. What felt like hours
of peek-a-boo just for just a single smile but since
his temperature was down we were sure that he had
turned the corner and was on his way back.
Alex was in the playroom when my Grandparents
arrived. He was just sat in his chair and not really
interested in having a hug. Hannah who is just a few
months older than him, was sat playing and handing
him toys, which just piled up on his lap. It would
have been nice for his Great Grandparents to see a
little more of him playing but may be next time. My
parents joined us for lunch in the cafe. Later,Mum
looked after Alex while Kirsten and I went to the
Thackeray Museum cafe for a break.
It was Clare's 17th birthday today and she had a
party in the playroom. Candlelighters charity and the
ward pay for cakes, drinks and a present for kids who
are on the ward. Kirsten wheeled Alex along to join
in but the only things that he expended energy moving
where his eyes.
Alex slept the whole afternoon away. David and Andrew
were here late afternoon. Joan is still not feeling
100% and is wisely not risking bringing bugs onto the
ward even though she is really desperate to see Alex.
While David and Andrew were here, Alex's feet and
hands started to become cold. Doctor Bob came to
inspect Alex and they decided to give him paracetamol
and a fluid bolas to thin his blood and kick start
the circulation. The bolus did not seem to work and
an hour or so later the team were debating if another
bolus would be necessary. Alex was left for an hour
to see if his circulation would recover on it's own.
Too much fluid over a short time can course problems
so recovery without more fluid is better. He did
start going pink around the edges again and his core
temperature dropped from 38.9C to 36.9C. Just a spike
and hopefully further round the corner he did go.
Kirsten really wanted to stay with him for the night
even though it was my turn on duty so off I went to
Eckersley House for a nice long night and a good
sleep. At 00:30 the phone rang and nurse Potsie asked
me to come back up to the ward because Alex was not
well. I sprinted out of bed and to the back entrance
of the hospital only to find it was locked and had to
run all the way round to the front. I found it's not
good for an unfit 30-something to jump out of bed and
straight into a sprint, especially when I had put my
undies on backwards in the rush.
When I arrived, Alex was surrounded by doctors,
nurses and registrars. His breathing was very fast,
he had an oxygen mask on and his heart rate was
between 200 and 230 beats per minute. Kirsten had
noticed is grunting in pain about 30 minutes earlier
and the doctor had been summoned. More morphine was
given and another fluid bolas. After a while he
settled a little but it's now 02:30 and his heart
rate is still 190 and he needs oxygen to breath
properly. Kirsten is sleeping. I would too but I feel
better watching out for him. Sleep's for girls
Tuesday 14th September 2004 ( Day 19 )
I was feeling sick, trying to stay awake so about 5am
I went to Eckersley House to sleep and Kirsten stayed
awake to monitor him.
When I came back up there was a doctor and a nurse
frowning over him. Alex still looked awful: big puffy
legs, arms and face, his tum was really distended and
he did not want to move. Kirsten was still monitoring
him, making sure that he keeps the oxygen mask near
and does not pull the drip lines when frustrated or
in pain. I went for a shower. As I was getting
dressed, Kirsten rang on the mobile to say Alex's
blood pressure had propped to 60/23, about half what
it had been just a few minutes ago.
During the afternoon, Alex was seen by consultants,
surgeons, registrars, SHO's and nurses. They were
obviously worried for him. Ian, who is an oncology
consultant, explained that he is having a rather bad
reaction to the chemotherapy but it was mostly
expected and they just need to keep him as
comfortable as possible until his blood counts come
up. The blood counts show how well his bone marrow is
recovering from the chemotherapy and with higher
counts he will be able to fight for himself. They
were currently worried that his bowel may be
perforated, allowing fluid through to parts of his
body it should not be.
Early evening, Alex's blood pressure dropped again to
53/23. The Doc Bob and the nurses decided to test if
the morphine was causing the drop in blood pressure.
Alex was given something to block the effects of
morphine for a few minutes. During this time we could
really see that Alex needed the pain relief, he was
in tremendous pain but his blood pressure did not go
up enough to indicate that the morphine was to blame
and so he was moved to PICU. This was just as his
medicines were due to be changed so they unplugged
all of his drip lines and Kirsten carried him round.
Alex's face was so swollen with fluid, he looked like
a bull dog, not really recognisable as Alex until he
saw me running to catch up, at which he laughed.
People still laugh at me, even when they are gravely
ill! The docs were really worried that the blood
pressure was a sign of his whole system shutting
In PICU he was given a new tube into an artery so
that the blood pressure could be monitored
continually. Kirsten and I are very confident with
the competency of the PICU staff, so, shattered, we
went to bed.
Wednesday 15th September 2004 ( Day 20 )
He's much better this morning. Most of the swelling
has gone, he almost looks like Alex again. The PICU
staff gave diuretics and other magic to lower his
pulse rate and up the blood pressure while loosing
the extra fluid. Alex has been watching TV, pointing
at books and interacting with us and the staff. This
has happened a few times of the last couple of weeks
and has been shortly followed by high temperatures
and lethargy. His neutrophil count is higher today,
0.26, the highest it's been in over two weeks. Still
severely neutropenic but at least it's heading in the
Alex was still floppy and we had to work hard to get
him to smile but he did once or twice. We were told
that he could go back to Ward 10 but there is no
pressure since PICU has no other victims. The nurses
were monitoring him closely while painting farmyard
animals on the windows. Kirsten even drew a pretty
Kirsten and I went off for a good nights sleep in
Eckersley House, not expecting to be woken up.
Thursday 16th September 2004 ( Day 21 )
Kirsten and I did have a very good sleep but both of
us woke feeling like we've had very little. It must
be because now the pressure is fading, the tiredness
is catching up.
During the day Alex played with toys, wanted to look
out of the window and was generally very interactive.
He still would not sit up, his tum is still painful
but the morphine has been reduced to 0.25ml/h, 8
times less than it was just the day before. It's
strange to think that Alex is still really poorly,
severely neutropenic with a damaged tum but compared
to two days ago, we can't think of him as anything
Late in the afternoon, Kirsten carried Alex back to
ward 10 where he was prodded and poked to make sure
PICU had returned all of him. A few trips up and down
the corridor and a visit to the playroom must have
seemed like a very busy evening for Alex compared to
staring at the walls in PICU. His TPN line (TPN is an
intravenous food for those who are nil by mouth) did
get pulled out by the wheel on his pram and blood
started to come back up his Hickman line but the
nurses soon jumped on it but the blanket that his
Great Nan and Gramps gave him did receive a bit of a
splatter. He was taken off all the lines for a while
and left of the morphine permanently.
Late on in the evening we realised that Alex is more
his old self when he fought sleep. Rubbing his eyes
and yawning for hours he would not go to sleep.