Tuesday 5th October 2004 (Day 8)

Alex spent the morning at Joan and Davids so Kirsten could go into work and I could try to sort some of the back log of bills and paperwork we now have.

Joan was taking Alex's temperature every 30 minutes and she could see that it had jumped from 35.5C to 37.5C over night. Not quite the magic 38C that's needed to drag him into hospital. Joan also noted that Alex's hands and feet were cold - most likely a sign of infection. I rang the hospital, again, to ask for advice. After an hour, Sister Rachel rang back to ask us to bring him in just to let the docs have a look. She was expecting to send Alex home later.

My Mum and Dad brought Alex back from Joan and Davids and then took us all into St James's

Jolly had a cot waiting for us and now it's almost like going home: Ward 10 is full of familiar faces and friends. Murphy's Law came into effect and Alex's temperature dropped to a nice 36.5C and his hands and feet warmed up so the doctors were not worried. Alex's bloods were taken anyway.

We all thought Alex's stroppyness was due to him wanting to sleep but when he was put in his cot he was sick again. When his t-shirt was removed the sticky covering the exit of the Hickman line came off to reveal a badly infected area of skin. Ash and Jo, two docs, both agreed that Alex should start a five day session of antibiotics and so Alex was properly admitted.

Kirsten came in early evening, by then Alex was in bed with a temperature of 39C. Paracetamol was used to bring us temperature down but he was sick again shortly after it was administered. I asked if he could have a more powerful anti-sickness and the nurses agreed so he started on a course of ondasetron. The doctors have also written him up for stronger antibiotics. So here we are again, hopefully for the last time.

I was going to stay over night but Kirsten sent me home because I had a heavy cold and she wanted to stay with "her little boy".

Wednesday 6th October 2004 (Day 9)

Overnight Alex was very unsettled and nurses and other parents were volunteered to amuse him. Eventually we fell asleep at about 1 only to wake again at 5:30.

The surgeons are due to visit Alex today to look at his Hickman line infection and the boil on his bum, which it causing him a lot of pain. It would be very unfortunate if the Hickman line had to be removed because of the infection, they are also worried that the boil may be an indication of a much deeper infection since it's been there for weeks now.

Thursday 7th October 2004 (Day 10)

Report from Kirsten, since I'm not allowed in to see him due to a heavy cold.... Alex fell asleep quite late again. He was woken at about 7 by the other kids in the bay getting up. They all seem to be early risers.

The surgeons have been to see his line and bum and all is positive. The antibiotics are working well on his line and the infection is only local to the tube exit through the skin and has not spread.

The boil on him bum is not getting any worse and the microbiologists cannot grow any bugs from the swabs. So the conclusion seems to be that it's not deep, a surface infection that should clear up on it's own.

Kirsten did have visitors during the day but I had to stay away. It seems like a month that I have not been in to hospital. Kirsten says it seems like a month since she's been home.

Friday 8th October 2004 (Day 10)

I was able to visit and saw at first hand that Alex, who is still really immune-suppressed and suffering side effects of the chemo, is lively and happy as ever. He has been sleeping more than normal with a couple of long sleeps during the day.

He's still on antibiotics until Sunday. All his counts are as low as during the last cycle when he was in and out of intensive care but this time he's happy and lively, just sick about once or twice a day. Indeed, just as I was about to go home, Alex was sick and had to have yet another NG tube, number 14 I think.

During the afternoon, a little girl, Hayleigh, next to Alex had to have her first NG tube fitted. She was warned that it will feel funny as it goes up her nose and down her throat. When the procedure started it went something like this....
Nurse: "OK relax this will only feel uncomfortable for a second."
Hayleigh: "No please, I'll do anything, PLEASE."
Nurse: "We'll be able to give you that horrible tasting medicine without you tasting it, now here we go...."
Hayleigh: "I'll take the medicine. PLEASE NO!" Followed by about 30 seconds of screaming like she was being murdered.
Nurse: "OK Hayleigh," (the nurse had to shout over the screaming) "it's done."
Hayleigh in a very quiet voice: "Thank you."

Saturday 9th October 2004 (Day 11)

Alex is really quite full of energy. After swimming, Tom and I drove to hospital. The doctors have said that his fluid balance is good and does not need to be on a drip after the antibiotic has gone through. Free Alex, Tom, Kirsten and I met Andrew, David and my Mum and Dad at Rico's Italian Restaurant for lunch then went for a nice walk in Roundhay Park. Both Alex and Tom were in heaven.

Mum and Dad came back to the hospital for the afternoon and looked after both Tom and Alex there while Kirsten and I popped off to the cinema to see Bride and Prejudice. Not one of our favourite films, it's could do with less singing, more story but what do I know.

Kirsten stayed yet again overnight with Alex, a monumental effort since she's in a bay. I stayed over for four nights when she was ill but we had a side room then.

Sunday 10th October 2004 (Day 12)

We were hoping that his blood count would be on the way up today and this would be the beginning of the end for the worst of the treatment but it's not time yet. Yesterday Kirsten was excited by a rise in his neutrophil count from 0.03 to 0.06. The right direction but unfortunately anything under 0.1 is never very accurate since it's a bit like heart rate where it's up slightly one second and down the next. When it jumps to 0.5 or higher, I'll be happy.

Today it's back down to 0.02. Poo.

Tom and Alex joined the other boys on the ward trashing the playroom. They really did a good job too. Kirsten went home just after lunch and Joan, Andrew and David came to help with the boys later in the afternoon. They kidnapped Tom who wanted to stay with his Dad and Alex but 1 monster + 1 monster does not add up to twice the effort but much much more.

My Mum and Dad are currently fussing over a freshly awake Alex and talking to me as I try to write this. Right I'm off for a tea.

Monday 11th October 2004 (Day 13)

The day we finally go home? The antibiotics have stopped, his temperature is down. All looks rosy. But look yonder, in the afternoon, what could that be? Not another high temperature? 'Fraid so.

Alex had quite a good sleep last night, finally flopping at about 22:00 with only a few breaks for nappy changes and temperature observations. He woke before the rest in the bay at 07:30 so I wiped him off to the playroom before he could wake anyone.

His bum and Hickman line were obviously giving him discomfort but he still had energy and wanted to play. I was all for packing the bags ready to go home until his blood counts came back and Doc Tim came in. His "line site" (the bit where the Hickman line goes through his skin,) was looking even more infected and there was a bigger lump on his bum where the boil was. All this and his temperature was up to 37.5C, just enough to start worrying everyone.

Platelet and full blood transfusions were given during the late morning and afternoon. This could have been reason for the higher temperature.

The consultant and a gaggle of doctors came to visit for Ward Round and confirmed that he will not be going home and will start a set of antibiotics asap.

Just after the antibiotics were attached, Alex started shivering. We have been warned that this could happen. His temperature also went up to 38.9C for which he was given paracetamol to bring it down a little.

It's taken quite a while, plus pain killers, to get Alex settled this evening. His bum must be really hurting because he can't seem to find a position that is comfortable. The shivering and high temperatures are not conducive to a happy baby.

It's 21:53 now and he's just gone to sleep. If he's unsettled during the night, the nurse will give him morphine to help. Night night everyone.