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 will help.

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 cries more.

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 blood pressure.

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 ago.

Sunday 19th September 2004 ( Day 24 )

Play. Sleep. Eat. Poo. Play. Sleep. Eat. Poo. Play. Sleep. Eat. Poo. Play. Sleep. Eat. Poo. Play. Sleep. Eat. Poo.

Monday 20th September 2004 ( Day 25 ) - Happy Birthday Nan

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 night.

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 to health.

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 bird.

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.