Friday 10th September 2004 ( Day 15 )

During the night Alex was pretty sick. He received diuretic that made him "pee for Britain" (quote from his nurse) and helped balance his fluids. When we arrived at 8, his heart rate was down to 150 and his colour much better. The PICU team were very positive.

Alex did try to play but with nine lines going into him and not enough energy to move much, he quickly became tired and ratty.

My Mum and Dad, Joan and Dave plus Andrew came in to visit. My Grandparents wanted to come in also but we have a full house already and Alex was finding it hard to settle with so many people around.

There was talk of him going back over to Ward 10 but the consultants just want to be sure he is stable so another night in PICU is predicted.

Saturday 11th September 2004 ( Day 16 )

Another night much like the one before. Tom and Kirsten were at home. Kirsten is entertaining Tom because he should be having fun at the seaside in Spain but as things worked out, it's better that everyone is here.

When I arrived in the morning Alex was in exactly the same position as when I left him. Usually he rolls and turns in his cot and ends up somewhere other that where we left him. He's still so lethargic, no interest in sleeping or playing. I managed to entertain him a little with a few books and a wooden toy with animal pictures on. He was more receptive to Andrew when he showed Alex the same toys.

Babara and her dad, Vin, came to say hello. Thanks for the biscuits. There's not much to see when Alex is this poorly so they did not stop long.

Around 15:30 Alex was moved back to Ward 10. Jonathan, a nurse from PICU, cam with him since they are short staffed on Ward 10. Just after the move Kirsten and Tom came back. Tom really wanted to help make Alex better but Alex just wanted to left alone. He did seem to like to watch Tom play, though but would not sit up and was still being sick every hour or so.

We all watched a film in our room, broken quite often but either Alex being sick or Tom wanting toast. Kirsten took Tom over to Eckersley late evening.

Alex was settled for a few hours until about 23:30 when he was sick but did not go back to sleep afterwards. He wanted something and was pointing around the room and screaming for hours. He bed ended up covered with toys, bottles and most other things in the room while I was trying to understand what he wanted. After hours and hours (sometime about 3:30) I gave him a small drink of juice. I had to ask the nurse first because he is nil by mouth. The juice just rebounded off his tum and back up again but still he wanted more. I tried him with another drop, which had the same effect.

The rest of the night was short sleeps followed by Alex crawling (for the first time in 9 days or so) around the cot, screaming. Now it was obvious what it was but he was not allowed ant more juice so I just had to put up with the screaming. The other people on the ward must have thought I was torturing him all night.

Twice during the night he had nappies with quite a bit of blood in them. I'm told this is due to being neutropenic and is expected but it's still not nice to see.

Sunday 12th September 2004 ( Day 17 )

Kirsten and Tom came in just as nurse Jo and I were putting him in a pushchair as an attempt to quiet him down. He must have been exhausted by then. I was.

I took Tom to the playroom and Kirsten with a quiet Alex followed. His been mostly calm and drank another bottle of juice. His tum did reject it again but he's looking a lot better. His temperature has dropped from fever (39C) to nearly normal (36C). His left hand is still much colder and more mottled than the rest of him, because of this he will have an ultrasound of his arm and neck tomorrow to find if there are any blocks in his circulation.

Alex slept most of the afternoon. My Mum and Dad looked after him while Kirsten, Andrew, David and I took an extremely hyperactive Tom to Tropical World. Alex is drinking quite a bit now but still seems uncomfortable. The morphine, anti-sickness, anti-biotics, anti-fungus, anti-cramps are still being pumped into him all the time but it's nice to see that he is fighting for himself and obviously wants to be better.

One of the really bad part of staying in hospital most of the time is saying goodbye to Tom. He was in such a fantastic mood until is was time for David and Andrew to take him away. He was almost begging me to stay here and sleep in Mummy's bed. When I waved to him once he was in the car, Tom would not look at me.

Alex was very calm during the evening, not quite asleep but not moving either. His temperature stayed down at around 36.5C but his breathing rate was still high at about 60 breaths per minute.

Monday 13th September 2004 ( Day 18 )

Kirsten and Alex had a very unsettled night. Alex seemed in pain most, which Kirsten thought was probably wind.

Alex's temperature was still down but he still did not have any energy to move. It was hard work just getting him to point at a book. What felt like hours of peek-a-boo just for just a single smile but since his temperature was down we were sure that he had turned the corner and was on his way back.

Alex was in the playroom when my Grandparents arrived. He was just sat in his chair and not really interested in having a hug. Hannah who is just a few months older than him, was sat playing and handing him toys, which just piled up on his lap. It would have been nice for his Great Grandparents to see a little more of him playing but may be next time. My parents joined us for lunch in the cafe. Later,Mum looked after Alex while Kirsten and I went to the Thackeray Museum cafe for a break.

It was Clare's 17th birthday today and she had a party in the playroom. Candlelighters charity and the ward pay for cakes, drinks and a present for kids who are on the ward. Kirsten wheeled Alex along to join in but the only things that he expended energy moving where his eyes.

Alex slept the whole afternoon away. David and Andrew were here late afternoon. Joan is still not feeling 100% and is wisely not risking bringing bugs onto the ward even though she is really desperate to see Alex.

While David and Andrew were here, Alex's feet and hands started to become cold. Doctor Bob came to inspect Alex and they decided to give him paracetamol and a fluid bolas to thin his blood and kick start the circulation. The bolus did not seem to work and an hour or so later the team were debating if another bolus would be necessary. Alex was left for an hour to see if his circulation would recover on it's own. Too much fluid over a short time can course problems so recovery without more fluid is better. He did start going pink around the edges again and his core temperature dropped from 38.9C to 36.9C. Just a spike and hopefully further round the corner he did go.

Kirsten really wanted to stay with him for the night even though it was my turn on duty so off I went to Eckersley House for a nice long night and a good sleep. At 00:30 the phone rang and nurse Potsie asked me to come back up to the ward because Alex was not well. I sprinted out of bed and to the back entrance of the hospital only to find it was locked and had to run all the way round to the front. I found it's not good for an unfit 30-something to jump out of bed and straight into a sprint, especially when I had put my undies on backwards in the rush.

When I arrived, Alex was surrounded by doctors, nurses and registrars. His breathing was very fast, he had an oxygen mask on and his heart rate was between 200 and 230 beats per minute. Kirsten had noticed is grunting in pain about 30 minutes earlier and the doctor had been summoned. More morphine was given and another fluid bolas. After a while he settled a little but it's now 02:30 and his heart rate is still 190 and he needs oxygen to breath properly. Kirsten is sleeping. I would too but I feel better watching out for him. Sleep's for girls anyway.

Tuesday 14th September 2004 ( Day 19 )

I was feeling sick, trying to stay awake so about 5am I went to Eckersley House to sleep and Kirsten stayed awake to monitor him.

When I came back up there was a doctor and a nurse frowning over him. Alex still looked awful: big puffy legs, arms and face, his tum was really distended and he did not want to move. Kirsten was still monitoring him, making sure that he keeps the oxygen mask near and does not pull the drip lines when frustrated or in pain. I went for a shower. As I was getting dressed, Kirsten rang on the mobile to say Alex's blood pressure had propped to 60/23, about half what it had been just a few minutes ago.

During the afternoon, Alex was seen by consultants, surgeons, registrars, SHO's and nurses. They were obviously worried for him. Ian, who is an oncology consultant, explained that he is having a rather bad reaction to the chemotherapy but it was mostly expected and they just need to keep him as comfortable as possible until his blood counts come up. The blood counts show how well his bone marrow is recovering from the chemotherapy and with higher counts he will be able to fight for himself. They were currently worried that his bowel may be perforated, allowing fluid through to parts of his body it should not be.

Early evening, Alex's blood pressure dropped again to 53/23. The Doc Bob and the nurses decided to test if the morphine was causing the drop in blood pressure. Alex was given something to block the effects of morphine for a few minutes. During this time we could really see that Alex needed the pain relief, he was in tremendous pain but his blood pressure did not go up enough to indicate that the morphine was to blame and so he was moved to PICU. This was just as his medicines were due to be changed so they unplugged all of his drip lines and Kirsten carried him round. Alex's face was so swollen with fluid, he looked like a bull dog, not really recognisable as Alex until he saw me running to catch up, at which he laughed. People still laugh at me, even when they are gravely ill! The docs were really worried that the blood pressure was a sign of his whole system shutting down.

In PICU he was given a new tube into an artery so that the blood pressure could be monitored continually. Kirsten and I are very confident with the competency of the PICU staff, so, shattered, we went to bed.

Wednesday 15th September 2004 ( Day 20 )

He's much better this morning. Most of the swelling has gone, he almost looks like Alex again. The PICU staff gave diuretics and other magic to lower his pulse rate and up the blood pressure while loosing the extra fluid. Alex has been watching TV, pointing at books and interacting with us and the staff. This has happened a few times of the last couple of weeks and has been shortly followed by high temperatures and lethargy. His neutrophil count is higher today, 0.26, the highest it's been in over two weeks. Still severely neutropenic but at least it's heading in the right direction.

Alex was still floppy and we had to work hard to get him to smile but he did once or twice. We were told that he could go back to Ward 10 but there is no pressure since PICU has no other victims. The nurses were monitoring him closely while painting farmyard animals on the windows. Kirsten even drew a pretty good cow.

Kirsten and I went off for a good nights sleep in Eckersley House, not expecting to be woken up.

Thursday 16th September 2004 ( Day 21 )

Kirsten and I did have a very good sleep but both of us woke feeling like we've had very little. It must be because now the pressure is fading, the tiredness is catching up.

During the day Alex played with toys, wanted to look out of the window and was generally very interactive. He still would not sit up, his tum is still painful but the morphine has been reduced to 0.25ml/h, 8 times less than it was just the day before. It's strange to think that Alex is still really poorly, severely neutropenic with a damaged tum but compared to two days ago, we can't think of him as anything but better.

Late in the afternoon, Kirsten carried Alex back to ward 10 where he was prodded and poked to make sure PICU had returned all of him. A few trips up and down the corridor and a visit to the playroom must have seemed like a very busy evening for Alex compared to staring at the walls in PICU. His TPN line (TPN is an intravenous food for those who are nil by mouth) did get pulled out by the wheel on his pram and blood started to come back up his Hickman line but the nurses soon jumped on it but the blanket that his Great Nan and Gramps gave him did receive a bit of a splatter. He was taken off all the lines for a while and left of the morphine permanently.

Late on in the evening we realised that Alex is more his old self when he fought sleep. Rubbing his eyes and yawning for hours he would not go to sleep.