Sunday 29 July 2007

back into UCH sunday 29 july

Sunday 29 July 2007-07-29

Adam spiked a temperature in the early hours of Saturday morning and after a lengthy watching and waiting exercise we decided he needed to come into UCH for checking, when he is neutropenic, when the slightest germ can be damaging to him, sometimes the germs the normally carries and that don’t affect him day to day become threatening to him as his immune system is unable to react to the threat.

So, we finally arrived at UCH around 4pm and after some initial investigations, he was admitted to T16, his temperature had normalised earlier it he day and we had thought perhaps it was just a blip and he would go home again, however during the night he spiked a temperature again and, on inspection there is some apparent infection to his heel, this was the most likely site for infection and one of the reasons that we were keen to prevent him from becoming neutropenic.

He now has some significant pain from his heel and is on I/V antibiotics which will most likely mean that he’ll be in hospital for up to a week, he is concerned already that his ‘hospital head’ is starting, that is the head that gets fed up as he’s in hospital and effectively out of action and away from his mates and his home, all of which provide him with normality on a day to day basis.

So, for now, I’m in with him, Pauline is coming in later to let me go to work during the week and we’ll see how things go once the antibiotics start to kick in.

Love to all


Thursday 19 July 2007

Thursday 19 July

Adam was rudely awakened this morning in order to go into UCH for more chemo, the antibody drug and also some platelets, his platelet count is very very low, the norm for an adult is generally between 250 and 400 and his have been running at around 6! This means that he bruises very easily and can bleed even easier, especially from existing wounds such as his heel.

This will be the third of four treatments and he tolerated the antibody drug (Rituximub) much better last time so we are hopeful that he will be in and out in a day again.

His leg gives him proper independence again and this means that he is often out till all hours in his car, the independence doesn’t yet extend to making his own or our tea though!

We are now at the stage in the chemo where his bone marrow should be being depleted and hopefully the leukaemic cells will be too, this is also the point where he risks infection, the chemo he is on is chosen because it is less likely to leave him neutrapenic which would potentially cause his significant problems with his heel. He is likely to need to go in again on Saturday for a top up of platelets and then again on Tuesday next week for more platelets.

That’s all for now.

Love to all.


Friday 6 July 2007

Adam Update Friday 6 July

We took Adam into UCH yesterday morning to discuss the ‘plan’

The doc reminded us that Adam is in a very difficult place having become resistant to the Glivec and now the Dasatinib and that their plan is to try and get him back into remission in order to prevent the disease taking hold again.

His situation is severely hampered by the still exposed bone of his heel which means that the hardest hitting treatment can’t be used otherwise he will lose his immune system and likely get a secondary infection in his foot which would very quickly become life threatening.

‘Rock, hard place’, I hear you say…..

The initial plan is to use an antibody therapy called Rituximub that is normally used in cases of Non-Hodgkin’s lymphoma but has shown some reasonable results with ALL ph+ cases, this will be in conjunction with chemotherapy and was to be given yesterday then once a week for a month.

Adam had a significant reaction to the antibody infusion and it was stopped then the dose rate slowed down to the lowest, it was then determined that it would be best to simply run it at the slowest rate and keep him in overnight as this meant a 15hour treatment, then they would give the actual chemo then let him home assuming he is well.

So, at the time of penning this, he should be nearing the end of the antibody infusion and waiting for the chemo to be prepared.

Sitting watching your apparently otherwise healthy kid being pumped full of chemicals that are designed to kill bits of his body is an awesome thing and not one I’d recommend to anyone but for the time being there is at least some treatment to be had.

As days go, yesterday wasn’t a great one.

Love to all


Wednesday 4 July 2007

Adam Update Wed 04 July

We met with the prof yesterday briefly and he told us what I think we’d all suspected, that Adams bone marrow test came back with a bad result.

There is no plan as yet but the idea is that the team at UCH will determine a plan today then we will admit Adam back into hospital later with a view to probably starting chemo again urgently.

Adam asked me if he can hear the plan before deciding if he wants to go along with it….

He went out with his mates last night, rang me at 4.30 this morning from the gutter at the end of our drive where he had fallen over, due in no small measure to the obviously huge quantities of alcohol he had consumed in the pub and bar after! …. .. I pointed out that his plates were dangerously low so falling over wasn’t a good idea, he just smiled, dribbled and told me he loved me!.......... before biting me on the arse!

He truly don’t like it easy this kid, sadly there will be more to come I’m sure..

Dad’s Pc is playing up at the moment so I am hopeful that you will get this Via Jackie, if you get it duplicated then apologies. It’ll be on the blog too.

Love to all