Saturday 28 April 2007

Saturday sunshine

Adam has been quite low this past week or so and so we sneaked him out of the hospital yesterday afternoon to bring him home for the weekend, today he had some mates over for a barbecue and had a really good time…. A reminder of what life should be about that’s for sure.

Love to all


Tuesday 24 April 2007

Tuesday 24th April

Adam has been quite flat for the last few days, he says he feels like he has flu and aches all over, the docs felt that his severe joint pain may have been down to interactions between the Dasatinib and one of the antibiotics so they have stopped the antibiotic for now and have replaced it with another that has fewer inter reactions.

He is sleeping much of the day and it gets harder to wake and motivate him, we fear that after such long stints in hospital, it becomes a way of life and your horizons become narrower and narrower the longer it goes on, its also impossible to get fresh air into the room so the notion of flinging open the window and being filled with the reality of a new day each morning is impossible to achieve and the artificial environment becomes home, this I am sure does little to bolster his spirit and at a time when he has had to endure so much for so long it’s no surprise that he gets very low about it all.

It’s hard to find things to motivate him as the amount of time he’s awake is brief and usually the first thought is to try to get some nourishment into him but we do try and with luck his body will bounce back, yet again, followed by his head and we can start to build him up again.

The impossibly slow progress of his heel is a huge limiting factor in his general recovery as it means he still cant even begin to think about weight bearing, the dumball rally is in just 8 weeks and the likelihood of him being fit to do it seems very low at this moment in time, but we have always worked on the principle that it’s best to take one day at a time, plan to do rather than not do and then see what happens. So… Lets see what happens!

Love to all


Monday 23 April 2007

" Life has a tendency to push you down against the ground. You decide whether you will lie on your back, rest on your knees, or crouch and wait for the moment to leap up and reach heights higher than when you stood on your feet."

Friday 20 April 2007

Friday 20th April - more pain please docs

Adam continues to improve slowly from the chest infection, the docs appear to have confirmed that it was not bacterial and therefore most likely fungal, we told them this at the outset as he has had problems with fungal infections in his chest before but I guess they have to treat for every possible eventuality.

He is quite weak now and he’s been fairly immobile for a couple of weeks which of course doesn’t help his recovery, he is also experiencing severe joint pain at the moment which means he can hardly move, the docs feel it may be a result of some of the antibiotics or possibly the Dasatinib, the new anti leukaemia drug.

Whatever it is, we need to get on top of it soon as he is struggling with the pain again.

Most of the antibiotics have been changed for oral rather than intravenous which means that, when he is strong enough he will be able to come home, at present though he isn’t thinking beyond day to day and he feels too weak to be able to manage at home for now.

The dressing on his heel has been changed to one that is intended to re-encourage the granulation of the tissue around his exposed bone, the new tissue that grew a while ago has now formed skin but it hasn’t covered the bone so he has a really neat looking area of new skin around a rather nasty looking bone sticking out. Not the ideal for a kid who wants to drive his new car when it arrives (hopefully in mid May now)

He is still breathing with the aid of oxygen but his ‘sats’ (see how we get all the lingo, years of watching Casualty weren’t wasted after all!) are getting better when he is on room air so his lungs appear to be improving, just a few other issues now to get moving on before he can be strong enough to get home.

Love to all


PS. A huge and belated thankyou to Karen Miller, the garden looks brilliant after your efforts!

Friday 13 April 2007

Morphine rules KO!

Adam started this morning in a lot of pain from his chest, the pain control team came to see him and after an Xray they determined that, whilst his lungs are slowly clearing, he has some significant pain from the lining of he lungs where they are inflamed, the lining of the plural cavity should be like two sheets of silk rubbing against each other and in Adam’s case they are like two sheets of sandpaper!

He is anxious about the pain and this increases his breathing rate which in turn means he gets less oxygen which increases his breathing rate which makes him get less oxygen which increase his anxiety…. You getting the picture?

Some heavy duty narcotics and a long chat about his improvement and he is a lot calmer now, sitting up and talking, the amount of oxygen he needs is a little less than yesterday so he is genuinely improving, he just doesn’t feel his is at the moment.

It’s hopefully now just a waiting game to allow the infection to clear and to get him active again, he is very skinny now as everything conspires to stop him eating but as his head is a lot clearer, I hope he’ll start to eat more soon, he does get hungry but takes very small meals or just nibbles, it’s all better than nothing but his body is working hard so he needs nutrients big time.

I’m swapping over with Pauline later so that I can go to Paris for some self inflicted pain on my legs by way of a warm up for the London Marathon next week. My training guru has a lot to answer for!!!!!!

Whilst you’re all enjoying your eggs and bacon on Sunday morning, spare a thought for four nutters from the UK who will be leggin it down the Champs Elysses with not a coffee or croissant in sight!

Au Revior pour maintenent

Amour pour tout


Tuesday 10 April 2007

Ruby Tuesday

Adam’s head appears to be clearing a bit, we had a long, long talk on Monday and it’s clear that he has a number of difficult thoughts in his head all the time, (surprise, surprise!) but today he was much more like the Adam that we know, he says he felt around 80%, given that he’s been around 5% for ages then that’s an enormous improvement!

His lungs are improving too, he is able to go longer without the oxygen and although he still cant exert himself it is clear that he seems to have turned the corner on this particular episode for now.

There is a consult planned tomorrow with the vascular team to see what more proactive things can be done about his heel as this is preventing him from weight bearing and thus walking.

For now, at least, some good news is extremely welcome!

Love to all


“Within each of us is a hidden store of determination. Determination to keep us in the race when all seems lost.”
Roger Dawson

Monday 9 April 2007

Easter Greetings from UCH!

Well, this Easter wasn’t quite what we’d planned…

Adam and I recently went to a good mates and he was at the time still very withdrawn and docile, he managed however to play a video game on an Xbox and play it brilliantly, which made me realise that his brain is probably all still there doing the normal stuff but just in a lights off nobody’s home state at the moment.

So on Saturday morning I decided to go get him an Xbox to see if he would at least have something to occupy him during the rare times he is up and awake, got back with it and he was still in bed and complaining that his breathing was getting worse, he recently had the bad cold that everyone has had and he obviously takes longer to get rid of the cold than most.

To cut a long story short, within a couple of hours we found ourselves in the back of an ambulance on a blue light heading for Mayday hospital, a few hours in the right itu dept and he was identified as having pneumonia and two thirds of each lung was wet with some nasty infection.

His BP was very low and they all got very jittery about this at Mayday, I’m sitting there calmly saying, ‘yeah, don’t worry he’s always low on blood pressure’ and they are all thinking he’s in need of intervention. Anyway we ended up going by ambulance from Mayday to UCH late in the evening where we remain.

He has been given some industrial strength I/V antibiotics and has been on oxygen for all the time, his breathing has improved and we hope that today will show him turning the corner.

His red blood count has dropped a lot over the past couple of days so he had some of UCH’s finest vintage claret overnight and he now has some colour in his cheeks again.

Interestingly, he has been more alert and awake than of late and, when he is awake, he says his head feels clearer and less ‘noisy’. I’m guessing this is because he’s had something else to occupy his mind with but if not then hey, we’ll take all the good stuff we can whenever it’s here!

Depending on how he improves, I shall make my decision on whether to do the Paris marathon or not later in the week but for now we are just waiting to see what the next couple of days bring by way of hopefully improvement. The way my legs and calves feel at the moment I can hardly imagine being able to run 26 miles, let alone do it twice in a week! If anyone is good at massage or has some performance enhancing drugs, they’ll be very welcome here!

Love to all for what’s left of Easter, Thoughts are with Les, Ian, Sheila and Family at the moment.


Tuesday 3 April 2007

update or a bus?

These updates, you don’t see one for ages then two come along together!

We had a clinic visit with the Prof this afternoon and during the visit he lightly dropped out that the results of the last bone marrow test showed Adam to be back in remission!

They are awaiting the results of another test to finally confirm things but that’s the best news we’ve had for a long time.

It felt a bit odd, we’ve had bad news every time for so long that good news is received in the most peculiar way, almost with disbelief and a need for qualification.

Anyhow, for now, I’m gonna believe the prof and go with the flow and perhaps go to bed with a smile on my face for a change.


Love to all


Sunday 1 April 2007

April 1st - no fooling

It’s been a while since I did an update so I thought it about time I put pen to paper so to speak..

Adam has been at home for a while now; he is struggling mentally with the apparently continual onslaught of news and events that don’t go his way.

He is very flat at the moment and spends most of his time in bed, he rarely sleeps at night as he drifts into and out of sleep during the day, we recently got some sleeping tablets for him and hope that these may allow him to get some pattern back to his sleeping.

His new car is now expected sometime during April for the time begin it’s kinda academic as he would have difficulty driving at the moment as his heel has yet to heal, the steroids that we prescribed in addition to the chemo have an affect on his ability to generate new tissue and as a result his heel has effectively gone backwards for a month..

He don’t get it easy this kid.

Love to all