Friday 27th August 2004 ( Day 1 )

Early start to arrive back in Ward 10 for 8:30. The ward was full, luckily the last bed available was in a side room and not in a bay. Yay! Alex went under the knife at 11:30. We were comforted by the nurse and told to relax, so we had a huge lunch and fell asleep in the room in Ward 10. We had to be woken to fetch Alex at about 14:00. Not that his operations took that long but he was asleep for a couple of hours in the recovery room.

In theatre he had a bone marrow sample taken, a lumbar puncture, a new Hickman line and chemotherapy into his spinal fluid.

He was very groggy for the whole afternoon and was sick a few times. Not the happiest baby around but at least it's getting him better.

Saturday 28th August 2004 ( Day 2 )

Kirsten had a very listless night, which was to be expected since he had a long sleep during the day and was feeling very poorly. Joan and David came over to look after Alex while Kirsten and I took Tom to Consiton village in the Dales for Richard Atkinson's 30th birthday do.

Tom had a great time, climbing the hill with his friend Erin and flying kites, building rock piles and complaining about the cold. Alex, meanwhile, was suffering with a high temperature and still being sick.

We relieved the grandparents early evening. Alex was asleep but not for long. He's still pretty poorly, which could be due to the chemotherapy or an infection picked-up during the operation the day before. At this point in the last cycle he was a lot better.

During the night he was very unsettled. It only took a dummy to settle him but he woke, screaming every 30 minutes or so.

Sunday 29th August 2004 ( Day 3 )

Much of the same. A few sicky moments, high temperatures and not much energy.

Alex's god parents, Liz and Graeme Spencer, came in to visit with their little one, Joe. Joe is looking very big, especially when compared to Alex. Alex is not a small baby but Joe, who is a couple of months younger, does have a good head of hair. It does make Joe look a lot older.

When we look back a pictures of Alex with hair, it does not look right now. We are used to him having a baby bald head.

Kirsten looked after him overnight. He was pretty unsettled, as usual, but also had diarrhea.

Monday 30 August 2004 ( Day 4 )

A tried creeping in at 7:30 to grab my jogging kit but Kirsten was standing there with Alex who was crying, so I took him off to the playroom and never got my jg.

He was a little moody in the morning with plenty of diarrhea. The chemo drug that was supposed to be ready early morning was made-up at lunchtime. This was because the pharmacy was all but empty so there was a long queue for medicines. Not really a problem but if we do get to go home on Wednesday it will not be first thing in the morning now, we'll have to wait till the chemo has finished at lunchtime.

The chemotherapy for this cycle includes a drip that lasts 24 hours a bag and there are five bags.

Mum, Kirsten, Tom, Joan, Andrew and I went to the Bolton Abby Fate in the afternoon and left my Dad with Alex. The nurses said they would do everything to help and even bring beer one an hour (on prescription?) to keep him calm.

Unfortunately for Dad, Alex had one of his worst afternoons with lots of sick and diarrhea. The nurses said Dad did a great job of amusing him but when we arrived back at the hospital, Dad looked worse than Alex.

It took a while to get Alex to sleep, he was full of energy but still feeling very sick. It was 23:00 by the time he was completely asleep. For the last hour I had to take my book and some toast and sit outside the door to his room. I could not leave him because there are three lines going over the side of the cot with not much spare length for him to roll about. This means that every time he moved about I had to check that the lines were not pulling but also meant that he would not settle since I was hovering.

Alex did sleep well after that with only 5 or 6 sudden awakenings. He did keep throwing, not dropping, his dummy out of the cot. The dummies that touch the floor have to go into a milton solution for 20 minutes. A pain at 2:30 in the morning.

Tuesday 31 August 2004 ( Day 5 )

Last day of this session chemotherapy. He's been pretty sick during the night. The yellow chemo that I can never remember the name does hit him hard. I watched the line turn from yellow to clear as the last of it was flushed through, a few minutes later you could see he was much more comfortable: less screaming, more smiling.

Kirsten was at work so my Mum and Dad came in to help look after Alex. My intention was to go to Eckersley House and do some work. Too tired to think after a broken night, I just managed to reply to a couple of emails and sleep for an hour.

Alex was unsettled all day. He's on three different anti-sickness medications, one of which is a steroid. The steroid seems to be making his face and head itch, to stop him scratching the nurses gave him piriton. He still has a few scratches on his scalp, nothing that will scare but he must have been is some discomfort. Kirsten said he was scratching his tongue when the chemotherapy and anti-sickness drugs first started.

I told Kirsten that she should stay at home for that evening and my Mum and Dad would come to take us home once his chemo had finished the next day, but Tom insisted that he wanted to see Alex in hospital so she brought him over. Alex was already asleep when Tom arrived and Tom had forced himself to stay awake in the car. He came into the room were Alex was asleep and climbed on top of me and fell asleep immediately.

Tom and I slept in Eckersley House and left Kirsten to look after Alex. She was tired from a long day at work and was not looking forward to a broken sleep.

Wednesday 1st September 2004 ( Day 6 )

Kirsten did have a broken sleep. Alex was sick during the night and seems to be in pain with wind. Lots of it. Tom was really interested in the playroom but every time Alex cried, Tom would rush over, stroke his head and say "Or-wite Alex , me here"

We knew we were probably going home sometime during the day so we clock/pump watched. The pumps that administer Alex's chemotherapy through the drip have the rate and amount left to go on the front. It was going through at 4.5ml/hour and first thing in the morning had 6ml's to go. After that it needed flushing with the same rate for three hours. I just wanted to crank up the rate and get him home.

Finally we loaded the car and took him back to Joan and Davids since Kirsten needed to do some shopping in Ilkley. Alex was not in the best of moods all the time we were there, even with the best efforts of the four adults in the house. Tom was told he was going home with Mum, Dad and Alex but woke to find himself in Nanna's house so he was not too pleased either.

After tea we took Alex and Tom home. Alex fell asleep within seconds of starting the car and was loaded straight into bed at the other end. Tom stayed up watching Thomas the Tank Engine in the dinning room. He crept though to watch Indiana Jones with us but ran up to bed when the snakes came on the screen.

Thursday 2nd September 2004 ( Day 7 )

Alex woke four times during the night. He has finally stopped with the runny diarrhea but now is passing some sort of industrial grade glue. He was retching a lot and I stopped his drip feed at about 5 to see if that would help. He was having anti-sickness into his feed line during the night to but that did not stop the retching.

In the morning Kirsten took Alex to Joan and Davids and Tom to school. Shortly after he arrived, Alex was heavily sick so much so his feed line came up from his tum and out of his mouth. It was for a while going in though his nose and out between his lips. This must have really upset him.

I called the hospital and arranged for the nurses from Airedale to go to Joan and Davids to fit a new NG tube (feeding line). They were nice enough to come past our home to collect the spare tube that Ward 10 had given us for just such an occasion. Alex now has a nice new feed line.

After the trauma of a new line, he slept for a few hours and then just flopped in his cot for another few hours. When Kirsten took him out, he was very lethargic and just sat. We were warned this might happen since the level of red blood cells would be dropping and we were to ring the hospital. Nurse Mark advised us to come in to have him checked out.

Since Kirsten and family, including Tom, are going to Aunt Sally's wedding the next day, I took Alex in to Leeds. We arrived at about 19:30 and Alex, after an hour of making sure we all knew he was poorly and a few bouts of being sick, was seen by a doctor who admitted him because he looked so bad and was a little dehydrated.

Alex spent the night on a saline solution drip. I was hoping that he might have a little more energy in the morning and since his temperature is not high, we could go home.

He woke himself several times during the night with diarrhea and retching but slept well in-between.