Tuesday 17th August 2004 ( Day 15 )

Early rise at about 6 and a quick escape before his crying disturbed the other three kids and parents. Unfortunately his drip stand was blocked by Luis's so lots of clattering, banging, crying and swearing later and the bay was at peace again.

Alex played until 11. Really happy and energetic, stomping up and down the corridor, painting and drawing (mostly on himself) and watching the other kids in the playroom. Just as he fell asleep, Mum and Dad arrived to allow me to do a little work.

David drove over to see how Alex was doing and chat about Tom, who is getting a bit mixed up with all the switches around. He sounds a bit upset and I'm not surprised, he must think he Mum and Dad like Alex more. Not true, Tom is just as important but it's difficult to tell a 3-year-old that. Especially when we don't have much time with him.

Alex woke for lunch and ate well, lots of macaroni cheese and a bit of ice-cream. Then went back for a long sleep in the afternoon.

Kirsten came back from a long exhausting day at work to take over from me. She was tired but still looked after him all night...

Wednesday 18th August 2004 ( Day 16 )

The night sounded terrible. Alex did not settle and at 3 Kirsten took him to the parents room to let the other kids have some sleep. Lots of gentle love and sedative persuaded him to sleep.

I found Kirsten wide awake with Alex asleep on top of her, on the sofa in the parents room at 7. She went to have a rest and Alex slept on my lap for a while longer.

During the night, Alex had pulled out his feeding tube. This meant that a new one had to be put back in. Poor Rachel was looking after us. She was the nurse who put Alex's first feeding tube in and she hates doing it. Alex screamed and choked. Not the nicest thing for a little chap to have to go through but if it makes him better in the long-run, I, along with Kirsten will hold him down like that as many times as it takes.

Joan and David came over for most of the day. I think David was a little disappointed when Alex was asleep for hours! All this was in to hospital to hear Alex snore. He did wake for a touch of lunch and later in the afternoon, we walked David and Joan back to their car. It's the first sunshine Alex has seen for days.

Best laid plans of mice and men. My parents were going to drive over to the hospital, take me home to collect the motorbike so I could go into work the next day. We were told that since Wednesday is the last day of his anti-antibiotics and he has a stable temperatures, he could go home the next day. So Mum and Dad just came for lunch.

Since his stupid dad managed to stand on his Hickman line and pulled it out of his chest by a few cm, we had been told that it would need replacing in surgery on Friday. His blood counts are still very low so he is not fit enough to be put under a general anaesthetic so this may happen next week now. I hope nothing goes wrong with his line or I will feel rotten, not that I feel good about it now.

Kirsten and I played with Alex until about 20:30 when eventually he settled down and went to sleep. Alex was quite unsettled, as always in the bay. No diarrhea, which if he had had loads would mean he could not go home.

Thursday 19th August 2004 ( Day 17 )

Alex woke fully at 6 so off we went for our usual early morning trip to the playroom. Lots of toast for breakfast and still a stable temperature.

The doctor OKed us for departure and off we went. Again.

Alex and Kirsten went to Joan and Davids house for the afternoon so I could do some work. Unfortunately there had been a storm yesterday and it cut power to my computers and the broadband/telephone connection was down so I could not connect to work.

Kirsten brought Alex back home at 16:00sh. He was full of energy and stomped around the house for hours. He ate a good tea and went to sleep quite early, at 19:30. We are having the roof mended at the moment and the tiles have been removed above Alex's bedroom. There's just a plastic sheet stopping the heavy rain coming in. It's quite noisy so I was surprised that he slept until 3 and tolerated his overnight drip feed well. At 3 I changed his nappy which woke him up. To get him back to sleep Kirsten took him into bed with her and I tried to sleep in Tom's bed.

Friday 20th August 2004 ( Day 18 )

We all woke when Joan rang just before 9. I had no idea that we were all so tired. Not such a broken night at in the hospital but the break from sleep that we had was quite long.

Kirsten and Alex went over to Joan and Davids for the day. Tom was not going to play school because he was showing signs of real unhappiness. He has been confused and sad for a few days. We're not sure if Tom stay with us while Alex is at home, if we have to go back to hospital soon (a very good chance of that) Tom will just be messed around again. Is it better for him to stay for as little as 24 hours or should we not tell him we are home?

Anyway, it sounds like they had a great day. Tom, Alex, Andrew and Kirsten went for lunch at the cafe at Storiths. The cafe has an upstairs full of model trains, some of them go round the room when you press a button. One of Tom's favourite places. Then on to the sailing club at Embsey for a quick walk. Finally back for a play and kip at Joan and Davids.

My Mum and Dad looked after Alex that evening while Kirsten and I went to the local cinema to watch The Village. We had the mobile on silent ring but visible through the whole film, just in-case. Alex had just spent the whole evening running round the house and finally crashed just before 22:00.

He slept quite well now with a low temperature. After last night I was worried about changing his nappy in the early hours but it needed to be done. He went almost right back to sleep, no problem. His nappies are always full when he's on a drip feed.

Saturday 21st August 2004 ( Day 19 )

Tom and I had a busy day: swimming at 9 plus Eureka Kids Museum, Halifax ski centre and watching model aircraft with my Mum and Dad.

Joan, David and Andrew came round to our house to help look after Alex and help Kirsten with DIY things. Alex has been in a bad mood all day. Maybe he knew that Tom was coming home.

We brought Tom home after his day out, just because we miss him. He'll probably go back to Joan and Davids during the week, just to keep a routine but for now he's ours again.

Tom loved being back home. He loved playing with Alex (though Alex was not quite so happy about it). Tom even fed Alex his sweets and dinner. When I was changing the dressing on Alex's feed line and Alex was screaming, Tom ran into the garden to fetch his Mum. Kirsten came running since Tom was so sure something was wrong.

We kept both lads up until they fell asleep. Hoping for a long sleep.

Sunday 22nd August 2004 ( Day 20 )

Sunday started quite late. Both boys woke at 7:30 and were very happy and in a mood to play. We met Andrew and Clare Walker at the sailing club at Embsey. I wanted to take Tom out for a sail but it was a race day so we could not go onto the water until 13:00 so we went to Tom's favourite cafe (the one with the model trains) at Storiths. Tom and Alex were still in really good moods, laughing and playing.

After lunch we went back to the sailing club and I took Tom sailing. Alex watched, even if he was not poorly, it was a little gusty to take him out. Andrew and Kirsten also went out on the water.

When I was out by myself, I could hear shouting. Kirsten, Andrew and Claire were all trying to get my attention so I knew there was a problem. Alex's Hickman line had dropped out. Note this is the line that goes directly into a vein in his neck and allows blood to be taken and meds to be given without needles.

We were all thinking "Oooh heck" or something along a similar vein. Frantic calls to the hospital and they did not seem concerned unless his platelet count was low. If Alex was bruising lots and they were not clearing up it meant that his platelet counts low and he could have internal bleeding. Not that we wanted to bruise him to find out. We had been following the progress of he bruises just to cover this possibility and we don't think there was a problem.

Since Alex did not seem to be in imminent danger, we packed-up the dingy and took the kids to Skipton Castle. Tom ran off almost as so as we got into the castle. He took turns towing Andrew, Claire, Kirsten and myself round the rooms and dungeons looking for dragons to shoot. At one point he read a sign out loud "mumble mumble mumble shoot dragons mumble mumble mumble" which is an interesting interpretation of "You Are Here".

After hours of running round and all the dragons had been thoroughly shot so, as all good knights do, we went to Nannas for a roast dinner.

Both lads were completely shattered by the time we arrived home but both fought sleep until quite late. Alex is now much better, he seems quite happy most of the time. Compared to this point in the last cycle, he's in much less pain with no bloated tum and he's tolerating his overnight feeds well.

Monday 23rd August 2004 ( Day 21 )

Kirsten went to work and took Tom to school. Alex had woken in a little discomfort and did not want his breakfast. Mum and Dad came round to look after Alex while I continued to sort out the cellar and do some work.

Evelyn and another nurse from Airedale came round at 14:00 to take Alex's blood. I thought it would be very difficult without the Hickman line because last time I saw blood drawn directly from the vein was the day Alex was admitted. At that point he had very thick blood and a low platelet count so taking just a small drop took hours and hours. This time the nurses found a vein and took a few ml and were finished within a few minutes. Easy.

After the results were ready (early evening) Rachel rang from St James's to say he is progressing nicely and he would probably have his Hickman line replaced on Friday. In the same operation they surgeons would also take bone marrow samples, a lumber puncture would be performed and he will have a chemotherapy shot into his spine. Another blood sample is needed on Thursday to confirm.