Tuesday 26th October 2004 (Day 28)

Alex woke at 2:30 with a full nappy. It's the first time in days he had "opened his bowels" as the doctors say and the poo was flowing. After that he was wide awake and wanted to play. I left him with the nurses while I changed the sheets and they noticed that his temperature was quite high, 38.4C. He seemed happy enough though and played for an hour or so in the playroom.

At 10:00, a more sensible hour, the doctors came to wake him again. This time there was a few more prods and pokes to find why he had a temperature during the night. Nothing conclusive.

Joan and David brought Tom in for lunch at the Thackray museum. Alex and Tom ran around making loads of noise, happily ignoring our calls to sit and be quiet. I'm sure one day we'll be banned from going there.

After lunch Joan and David looked after Alex and Tom and I went off to the playroom. The doctors came to see Alex and found that the new long line in his arm was "tracking". This is where the infection in his blood has been transfered to the line and the track of the line is visible on the surface of the skin. The line needed to come out asap but he also needed more antibiotics. Alex received the antibiotics as a high rate so they could be finished quickly and the line removed.

At 19:30 the antibiotics had about 15 minutes to go, we were in the playroom talking to other parents. One of the other Mums noticed that Alex was shivering, by the time I had pushed him down to the nurses station, his hands and feet were blue and the shivering was really pronounced. His temperature was 39.4C.

In bed, Alex was sick quite a few times and became very floppy. Nurse Julie attached a monitor for blood pressure (which was OK) and a probe to measure blood oxygen levels and heart rate. His oxygen level dropped to 88% and the heart rate peaked at 205 bpm. An oxygen mask was placed on his pillow and turned on high. He was clearly distressed but it was easy to keep calm since we've seen him in worse situations more than once.

The on-call doctor came and confirmed Julie's idea that it was because the infection was being pushed out of the line and into his blood stream faster than he could cope with. We still had to wait until the antibiotics and flush had finished before whipping him off to the treatment room and removing the infected line. He was also given a new cannula in his ankle just in case he needed a fluid bolus or other emergency treatment.

An hour or so after the infected line was removed, Alex's temperature had returned to a more healthy 37.2C and he was asleep. Crisis over at about 22:30.

Wednesday 27th October 2004 (Day 29)

At 2 Alex awoke screaming. There was nothing really obvious wrong apart from a temperature of 38.0C. After a few minutes of screaming I took him out to the playroom to calm him down and give Grace a chance to sleep. He was given paracetamol to lower the temperature and after an hour or so he was sleeping like a baby should.

Even after the late night and broken sleep, Alex was up at 6, happy and wanting to play. He remained in a great mood all morning.

Since the cannula fitted yesterday is still working, the doctors have started him on iv antibiotics again for as longs as it lasts. There will be no bloods taken today because this would add to the risk of loosing the cannula.

At lunchtime, Kirsten and Tom came to play. We bought a take-out from Thackray and ate it in Eckersley House. Tom and Alex played at opposite sides of the playroom while Kirsten and I chatted to other parents.

After an afternoon partly in Eckersley and partly in Ward 10, it was tea time. Grace, Tom and Alex had a picnic in the bay. Tom and Grace hit it off. Grace is the same age as Tom but has had to learn to walk again after her illness. Tom was encouraging her to play football in the bay and run around. It must be the most running she has done since coming back on to the ward a few days ago.

Grace and Tom were sad when we had to separate them. I think Tom wants to be poorly and stay in hospital, from his perspective it must seem really good fun.

Alex did not have his usual sleep during the day so passed out around 17:30. It was only when the nurses came to put his drip up for a new round of antibiotics that he stirred. At 19:00 he woke again in a good mood and wanted to play. It's now 22:30 and I've just given him away to the nurses so I can have a few minutes break. I think the second or third time I done that in four months. I can hear him crying out by the nurses station now he's realised it's not his dad pushing the pram. I'll have a few minutes of reading after finishing this and then back to the playroom grindstone.

Thursday 28th October 2004 (Day 30)

Finally managed to persuade Alex to sleep just after midnight. We sort of watch the last few minutes of a James Bond film in the playroom before he walked himself down to the bay.

He was still hooked up to a pump. The nurses did not want to detach it in the four hours between antibiotics because the drip could be helping the cannula to work. If it was removed, next time it's reattached, it may not work. Unfortunately the cannula was on the way out and made the pump beep every few minutes during the night. Alex slept through it but a loud beep within two feet of your head that just might mean that life saving drugs are not reaching your son, tends to keep you awake.

Alex woke when Joan rang at 9. The doctors came in just after that to fetch Alex to the treatment room. They looked at the line site again, it looked better. Blood tests were needed to see if Alex required blood transfusions plus they would show if he was still neutropenic. The cannula would not flush and would not bleed so it had to be removed. Two doctors searched for other veins for a new cannula or a blood test but they were unable. Even after Doc Sam retrieved an infrared light from neonatal that is really just a bright light that is beamed through the skin. Sam declared Alex "aveinula" after he could not find a single vein. Blood was eventually taken from an exhausted Alex from the drops left when the old cannula was removed.

Because of the lack of access, Alex has been moved from IV antibiotics to oral ones. During the morning his temperature again jumped to 38.4C.

Alex's mouth was swabbed for a sample again because his tongue was white. The test came back as positive for oral thrush so he was given flucanosol.

Joan and David delivered Tom at lunchtime. Kirsten arrived just after. There was a Halloween party at the Children's Day Hospital, which was very good. Tom really loved playing bingo! After the games, we went to Thackray again for lunch with Jenny and Lewis.

The afternoon was spent setting up the playroom in Ward 10 for the Halloween party that was planned for the next day. I went for a quick sit down but ended up falling asleep, which is quite rare for me even when really tired. Meanwhile, Tom and Lewis ran riot around the ward. Alex just tried to keep up.

Alex fell easily asleep at 20:00. We tried to wait for Tom to fall asleep before starting a horror film about sharks but at 22:00, we started watching it anyway. Tom was asleep within a few minutes of it starting.

After the film, at midnight, I carried Tom down to Eckersley House. He woke when i tried putting him in pyjamas and screamed to be taken back to hospital, to Alex and Mummy. After three hours, yep three hours, of trying to calm him, telling him off and ignoring him, the screaming became so loud that I took him back into the hospital. He stayed with Kirsten in the little fold-out bed next to Alex's cot. I could not sleep until 5 because I felt back about shouting at him.

Friday 29th October 2004 (Day 31)

At 09:30 I dragged myself out of bed and up to the ward. Tom had just had a bath because he had wet the bed while sleeping next to Kirsten. Alex's temperature was high again at 38.4C. Kirsten looked nackered (but still beautiful of course), Tom had squirmed as three-year-old's do all night.

Alex and Tom helped Cath again to prepare the playroom for the party. Tom found he liked towing Alex round in the trailer of a new tractor.

Since the blood taken yesterday clotted before being tested, Alex had more taken with a heal-stab.

The Halloween party started after lunch, with cakes, drinks, bowls of sick and pools of blood. Trick and treating by the kids on the staff ended up with running battles - nurses and kids alike armed with water filled syringes. Alex was a little lost in the mayhem. He was dressed up in a sheet, apparently a ghost. It was great to see some of the kids who had not been happy or end out of their rooms for weeks or months having fun. Are wheelchairs like glasses? Your not allowed to hit people with glasses, can you squirt water at kids in wheelchairs? The nurses thought so. It's OK because the kids squirted back.

During the battles and the noise and the mess, Sam came to give us Alex's blood results. Alex has a neutrophil count of 1.9. Up from 0.5 a few days ago and 0.01 last week. Doc Tim has said that he can go home on Sunday. We can go home. WE CAN GO HOME. Did I say, we can go home on Sunday.

Only one condition - Alex's temperature must stay below 38C till then. There's only one place to go to celebrate in hospital, the cafe. Tom and Alex ran around like little boys should. After that Tom and I went home for the night. It almost felt like home, different now we may be able to properly consider it home.

Saturday 30th October 2004 (Day 32)

A day spent waiting. Alex needs to keep his temperature down. It did tease us by going up to 37.5C, which worried the docs. It's a pretty nasty infection that Alex has had, the docs need to be sure that he will not have one of those turns that have happened a few times over the last few weeks. Airedale hospital is near enough but it is not equipped for AML patients so we need to be within spitting distance of St James's for another day or so. Even when we are home, Alex will need close observations. How do I tell work that I need to be near Alex for a while longer, when they have been so good?

Sunday 31th October 2004 (Day 33 - The day we went home)

It should have been a really early start but our teenage 3-year-old would not get out of bed. In the end I had to dress him in bed and lift the sleeping beauty into the car.

We arrived in the hospital at about 10:00 and did a very quick turn around since Kirsten was ready and waiting. In fact if we had been any later, I'm sure that they would have been waiting in the car park.

After lunch with Joan and David, we walked up the road to Polly's Halloween party where both Tom and Alex had a thoroughly grand time. This was perfect to tire both of them out and the whole of our family had an early night - at home.