Tuesday 6th July 2004 ( Day 0 )
We arrived at St James's at 1 in the morning and
taken straight to the treatment room. It took hours
of holding an exhausted Alex down while different
veins were tried to take his blood samples. Sometime
during the early hours there was an x-ray. About 5:30
we were given a side room (Bed 18) and we collapsed
for a hour.
At 7 we were woken to be explained the first part of
the treatment Alex would be receiving. They needed a
bone marrow sample and a blood cross match but his
white blood cell count was too high (about
190,000,000 cells per ml at this point). Sometime
syringe the morning Alex was taken back to the
treatment room and bone marrow taken anyway. He also
had a Vascular Catheter (vas cath) put into his right
hip. This was two tubes coming out of a vein to allow
medicines to be put in and blood to be taken out.
Kirsten and I went for breakfast with Joan, David and
my Nan and Gramps while this was happening. We tried
to explain as much as possible but were pretty
exhausted and confused by then.
Shortly after Alex was moved to the Paediatric
Intensive Care Unit (PICU). There he was put on a
leuko farisis machine. This scrubbed some of the
white blood cells out from his blood and lowered the
number of cancerous cells in his body. At this time
we were informed that the number of white cells had
reached 380,000,000 cells per ml and the maximum
number that a body could stand would be about
500,000,000. Note that his white blood cell count
would be doubling each day.
For many reason this was the worst part for us. The
consultants did not know if the leukopheresis would
work. It could even kill him - his red blood cell
count was very low, too low to accurately cross match
his blood type so they had to guess. The machine
needed priming with blood and this blood could be
rejected if it was not the right type. The
manufacturers said that the machine could not be
primed with saline solution so the consultants had to
use the nearest blood type they could.
During all this Alex was still panting away, his red
blood cell count was really low - all the cancerous
cells left no room for the good cells - and we was
breathing through an oxygen mask to keep his
saturation levels up.
One of the reasons that the doctors at Airedale
thought that he was not too ill was he did not seem
dehydrated, this was because his liver and kidneys
were full of the cancerous white blood cells and were
not working. His nappies had been mostly dry for
days. His tum looked very distended, this was partly
due to the swollen organs poking out from under his
We were taken aside on a few occasions during the day
and reminded that we should prepare ourselves for the
Joan and David were mostly there to support us but
they did have to go back to Ilkley to sort out Tom,
our house and the dogs. Kirstens cousin Sally and my
brother Jon drove up to add their support. Sally is a
GP so was great at filling in the holes in our
knowledge of what was happening to Alex. We both were
feeling quite numb by this point but it was fantastic
to have all this support.
My parents spent the day racing across Spain to
Alicante to jump on a flight to Leeds. It took them
only 6 hours from my phone call asking them to come
over to them arriving at PICU.
Sometime during the day the decision was made to tell
Andrew who was in the North Sea on a boat. It would
be torture for him if he was told and could not get
back but it would be worse if he did not see Alex and
the worst had happened. Andrew was willing to risk
his job to persuade his company and clients to get
him back home. Andrew was taken to the east coast of
Scotland and flown down to Leeds where his raced over
to the hospital and arrived on Thursday.
That night we were given the on-call doctors room to
sleep in. Too exhausted to do anything else we slept.
Wednesday 7th July 2004 ( Day 1 )
Kirsten pointed out in the morning that it must have
been a successful night (our son did not die) since
we were not woken. At about 7 we went back into PICU
to find Alex still asleep.
Alex underwent another trip on the leukopheresis
machine. He could not start chemotherapy without the
number of white blood cells being lowered. Now they
were more sure of the blood type he had several
Kirsten and I had a long meeting with the consultant
who went though in detail, the treatment Alex could
expect in the next few months. During the meeting
Alex's first chemotherapy was being prepared.
Alex started his chemotherapy during the evening and
was kept in PICU for another night.