Tuesday 29th May

Adam went to the hospital this morning to meet the doctor who is to cast the socket for his artificial leg, the guy was interested to know about the Dumball rally and he was interested to help with some of the logistics, Adam walked the parallel bars twice on Friday with a temporary artificial leg, we plan to get Adam to try walking with crutches for a short distance so that, in an emergency such as a fire in a hostel in Bulgaria, he will be able to move independently. He isn’t supposed to put weight or strain on the right heel but in an emergency I guess anything goes!

Plans for the rally are well underway and we begin to realise that there are a lot of logistics still to resolve, not least getting the car registered urgently so we can legally dispose of it!

And then there’s the more important issues like, what colour super soakers do we buy to ensure that we can do proper water fights on the way!!!!

Watch this space

Love to all

Colin

update Wednesday 23may07

I should have done this update yesterday.

We had Adams latest consult with the prof yesterday; this was also the time we would get the results of the last chromosome test on his marrow.

I had asked the registrar to tell me the results of the test over the phone at the end of last week, she asked if I was sure I’d want them over the phone because obviously they can be bad as well as good, I said I was ok with it as it would determine whether I went with Adam and Pauline, she emailed me back to say that the results were in but were being posted straight to the prof and she couldn’t get then over the phone.

Which was an excellent lesson in don’t ask a question if you cant face the answer, I naturally assumed she wasn’t telling me because it was bad news and spent the weekend fretting, finally my fretting got the better of me and I emailed the prof to ask the same question, he replied to say that the result couldn’t be given in 10 seconds or by email but that they were very good, not zero but very close and he would then be out of contact till clinic!

So I went to clinic!

The results were good, and Adams bloods are near normal so the plan is to continue at the moment, Pauline queried the dosage on the silver bullet drug, Dasatinib as this had been lowered a while ago owing to a reduced platelet count and it was agreed that his dosage be upped.

The prof also decided to stop a couple of the other drugs he’s been on so he was pleased to be released from taking them.

The next consult is early in June just before the Dumball, and will be mainly to monitor the effects of increasing the Dasatinib on his blood counts.

So, for now, he’s enjoying cruising around in his car….

Enjoy the bank holiday

Colin

have car will travel... anyone seen my boy?

With a bit of skulduggery and some advance planning, I managed to get Adam to the car dealership without him knowing that his new car was there waiting and ready for him to drive away..

We went in under the pretext of him needing to sign some forms and he was confused when the guy gave him a tax disc and some keys and said, there you go!

SO, he took me for a drive then we came home to meet the documentary makers that are to film the Dumball rally and he's now buggered off somewhere with Lauren for a drive.

Obviously getting in and out is difficult and he needs a hand with it but once in the car,he has his independence back!

Today .... The boy is a happy bunny

If anyone knows of a company who wants to sponsor a panel on the Dumball car by having their logo on it then please let them know to contact me. If anyone wants to sponsor our effort to get to Istanbul in a 'reasonably priced' car then navigate to www.justgiving.com/dumball PLEASE be sure to mention me or the Adam's Apple's team so we get the credit!

Love to all


Colin

Adam home agrees with him

Adam had a good weekend, he is in a much better place mentally now and it is like having the old Adam back.

He is in pain with his heel, lungs, back, wrists, fingers, and bones generally and is fed up with things hurting but he is much more positive than of late and this changes the mood all round at the moment.

We are not due back to UCH until the 22^nd May when we’ll hear the results of the latest chromosome test, my instinct tells me it’ll be clear and I hope to goodness that my instinct is right!

So for now there is an air of normality that has befallen us, it’s a welcome one that’s for sure.

Love to all

Colin

MR HORN HAS LEFT THE BUILDING

Took Adam back into the hospital Sunday evening and spent the day with him yesterday chilling and chatting, he went to the gym and did a tiny amount of physio which he enjoyed, then eventually the docs did their rounds and asked how he got on at the weekend, ‘fine’ he answered, ‘ok’ they said ‘lets think about making you being at home a more permanent thing’ ‘yes please’ he said, ‘how soon’ they said, ‘how about now’ he said, ‘ok’ they said.... 'best get packing' I said!

So we packed everything up, met the transport guy and brought Adam home late last night.

It felt a bit like running away from school or playing hookey as it wasn’t planned, but like all those days in your childhood when you are playing hookey, all the more precious as a result!

The weekend really did the trick and he has a much more positive head on him at the moment so we hope to build on that as much as possible.

Love to all.

Colin

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

Colin

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

Colin

" 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 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

Colin

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

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

Colin

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

Colin

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

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.

Colin

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

Colin

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

Colin

UCH holiday camp beckons

Tuesday 13 March

We visited with the Prof again today, Adams blood counts have taken a nose dive which is a sign that the chemo is working, the effect is that he has become Neutropaenic and at infection risk again.

He has been experiencing some serious anxiety issues as a result of coming off some of the painkillers that he's been on for a long time and also because... yep, you've guessed it! He has a lot to be anxious about!

He asked if he could be brought into hospital for a short break while he tries to sort his head out, the prof felt this was a good idea as he is likely to need platelets anyday as his counts continue to fall.

So we are back in UCH on T13 room 2 where the nurses are making an appropriate fuss over him, he can get some professional help here and with luck it'll be a boost for him.

love to all


Colin

Adam update - it's the way you tell em

On Monday Adam went to the gym at our local hospital and he spent some time there being fussed over by the girlies who did some interesting things with his leg/s and who after some request by him, fitted a temporary artificial leg to his left leg and he stood up aided by a stool to support his right leg, it was amazing to stand eye to eye with him, I’d forgotten how tall he is!

He was really buoyed up by being able to stand; it’s been a huge issue for him so it was a real boost.

On Tuesday we had our meeting with the professor at UCH to see whether the news we had been given the previous week had any other alternatives, I was terrified of going in as was Pauline, I went to work beforehand and when I got home to get them I expected him to be like the kid who has to go and see the headmaster! He was dressed, ready for action and told me he felt great and full of energy.

Whether this was a direct result of realising that he could actually stand again with some help or whether he just kicked himself out of the depression for a while I don’t know but nonetheless he had a good head on him as we went into the hospital.

The professor didn’t give us any different news, however he delivered the news in a way that seemed to reassure us all much better than previously and Adam liked him, this is a vital thing for Adam, he does best with people he likes and who he feels show a genuine interest in his case.

So for now, the plan is to try to improve his bone marrow by continuing the new drug, there is a possibility that the steroids may be replaced with another drug called Rituximab which is normally used for other types of cancer but may give some improvement for him, the Prof explained that as the existing treatment isn’t working, we need to find something that is different as the leukaemia is clever and learns how to overcome many things that are thrown at it.

We watch and wait again…

Love to all

Colin

One step forward ------- a few back

We had what we thought would be a routine blood test on Monday of this week whilst we went in for a bone marrow aspirate…

Actually when I say we, I obviously mean Adam, (why do I do that?)

His blood results showed a slight increase in his white cells, a continuing drop in his platelets and a normal red cell count.

The consultant rang on Tuesday to advise that they had found leukaemic cells in his bone marrow and that we needed to go in on Wednesday to discuss the options.

We duly went in and discussed the options, there were 3 and two of them were unpalatable so, on the basis that the Glivec is clearly not doing it’s intended job of holding his leukaemia at bay, we went with option 2 which is to use a brand new (just licensed last week) sister drug of Glivec that is used where the Philadelphia Chromosome become resistant to Glivec. The new drug is called Dasatinib.

So, the boy is now one of only 3 people at UCH who are on this new drug, the docs are throwing in a month of chemotherapy and some steroids for good measure and, if we keep going back for more we get a set of free glasses or a digital watch!

It’s a moveable feast this Leukaemia type thing!

Love to all.

Colin

blogger blags some wonga

For reasons best known to anyone but me, I have been talked into running both the Paris and London Marathons in April. They are just a week apart (given I took 10 days to recover from the Dublin marathon, it could be interesting!) I couldn't get aTCT place in the London so had to take a place for the Seafarers UK charity, check out the link at www.justgiving.com/colin-horn and if you have any money left this time of year, do make a donation, it'll be helping a worthy cause!

Thursday 8 February 2007

Adam had his first visit to Roehampton on Monday this week, he had a rough weekend and was feeling quite poorly, we forget that he does get ill in a normal way and not everything wrong with him is related to the illness, sometimes he can just get to be plain old ill I guess.

We eventually got to Roehampton a good few hours later than we had been booked in and met with the doctor there, Adam wasn’t impressed with him and it’s amazing how important to Adam it is that he gets on with the docs, anyway had what amounted to an introductory visit, they cant do much at the moment about a prosthetic or about his walking training as he cant weight bear on the right leg owing to the heel not being healed yet.

He is quite weak and has lost weight so the plan is that he be referred to the physio department at our local hospital and they will visit at home and or have him in the gym for exercise and training for his leg muscles in advance of his prosthetic fitting.

His weight is very low, he doesn’t like too many personal details being given out but suffice to say that he’d be boxing featherweight and most of the girlies reading this would be jealous of his weight!

We got back from Roehampton and he had a major down; he had been quite depressed over the weekend and he said that he was fed up with his life and with being ill and not being NORMAL

I told him that he should shape up and get real, there were many people with much bigger problems than him! Take that Jade Goody for instance, she’s gone bonkers and that poor old Shilpa Shetty, she has to put up with being treated like a deity!

Well actually we sat together for a long time and talked and cried, then Pauline took over and talked and cried with him too. Eventually he rallied and began to bounce back.

Later in the evening he said ‘dad, I’m sorry for upsetting you’ which upset me all over again of course… Having a kid with Adams issues does make a modern man of you, I can cry for England now on a whim, takes hardly anything to set it off! Good god, I’ll be knitting and doing the washing up soon!

He is much brighter now, he’s eaten a bit more over the past few days and looks better, he’s just been bashing me as I wanted to nick something of his.

We are back in UCH on Monday to meet with the Vascular team and his Haematology team as well, his leukaemia has been sidelined by the feet of late but we do have a constant awareness that he may be winning this battle but that in fact, winning this battle simple allows him the opportunity to fight a bigger war soon.

On a technical note, without the Glivec, his silver bullet drug, he would not have any legs by now, it is this drug that, (we hope) continues to hold his leukaemia at bay and buys him the time to let his heel repair itself, without the drug he would have had to have had a transplant by now and in order to have that then both legs would have been taken off. (Note to the guys who unlocked the human DNA sequence – Cheers Chaps, we owe you one!)

Love to all.

Colin

Adam Won - Staples 22!

Friday 2nd Feb

Adam had the 22 metal staples removed from the ‘little leg’ yesterday, he described it as, not unbearable pain but more like someone tearing out a clump of hair for each one. He was very anxious beforehand and I think the reality was probably better than he expected but bad enough anyway!

We are hopeful that the long awaited Vac Pump will arrive today and can be connected to accelerate the healing to his right heel.

He has a number of visitors due today and we are due on Monday to go to Roehampton limb fitting centre for our first visit to the guys with the metal legs, not sure what the plan is yet but will update as soon as we know.

Love to all