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 rib cage.

We were taken aside on a few occasions during the day and reminded that we should prepare ourselves for the worst.

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 transfusions.

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.