UPDATE 30 NOVEMBER

Well, it’s been another lively week, chez UCH.

You may recall that, sadly predictably Adam came back into UCH last week as a result of an infection, he responded reasonably well to the antibiotics and then got the expected chest infection that usually occurs when he is neutropaenic.

Then, just for good measure, we found another game to play..

Adams platelet count has been very low, he has often had a slight reaction when having the platelet transfusions and last weekend he had a more severe reaction like a mild anaphylaxis, his breathing became short, he started coughing and immediately asked for the transfusion to stop, he was unable to get his breath and so was put on oxygen for a time.

Now…. Here’s a potential management problem…..

He has very few platelets, and I mean very few, a recent count was 4…… they get knocked out daily and he uses them up too, he cannot live without them and….. his body reacts to them by going into shock!

Answers on a postcard please…..

Having mailed and spoken to the transfusion specialists they too agreed that it’s a difficult conundrum.

Dr Doom and Gloom asked to see us as a family and pointed out that the situation could easily become life threatening if Adam had a large bleed or damaged himself. So, whilst Adam appears pretty much recovered from the infections now and I hope to take him home tomorrow (Saturday) he is in a precarious position.

We thought he had started making platelets on his own the other day when his count appeared to pop up on its own but it seems that, whilst his marrow may be beginning to do things, it is more likely that the tests were incorrect.

Thus the docs have said that they will only transfuse if he is actively bleeding, he had a bag of platelets tonight and again had a reaction and needed oxygen to breathe.

Not entirely sure how we will manage him at home in the even that he cuts himself badly or gets into difficulty but he will feel better at home….

Dull? Never, not around here!

Love to all.

Mr Horn is back in the building

The boy came home this evening…

He spent two hours in the ENT hospital this morning as the constant nosebleed he has had all week needed some urgent attention so the guys there spent some time removing a blood clot the size of a golfball that was building in size at the back of his nose and into his throat, he’s bleeding and has a cold, you can imagine what it must have been like!

The guys then cauterized the inside of his nose to seal off the blood vessels, this seems to have worked so he is now able to go without the tampons he’s had stuffed up his nose for the past few days.

He is delighted to be back home and cant wait to have Bailey home too, (I’m in no hurry of course)

The docs have stopped all his leukaemia treatment at the moment to allow his body to start making its own platelets again for a few days, he is due to start the home administered Chemo on Tuesday next week providing he is clear of the cold by then.

Once he starts the chemo his platelets will drop off again and he has developed a reaction to the platelet transfusions which gives some cause for concern, so we simply watch and wait again to see how his disease reacts to the low dose chemo.

Love to all

update Sunday 18th

Adam is sitting up in bed, typing on his lappie, Facebook I imagine!

We were having a competition to see who could cough the most during last night so neither of us got much sleep, and by 5 o’clock this morning I had decided that the chair I was sleeping in really was never going to become comfortable!

Yesterday the docs said that they had grown a bug in his blood and that the broad spectrum antibiotics he was already on would be fine to deal with the bug so they expect him to be in for 5 days to complete the course of IV antibiotics then hopefully go home.

At some point in the not too distant future I hope to get him to haul his ass into the shower and then we can go outside and hit the shops to get some of the things he needs, he is busy trying to get involved with music management so is designing logo’s business cards and the like in order to get things off the ground.

Julie kindly emailed Adam some photos of Bailey in his temporary home, he was cuddled up to their two Alsatians and also to their family on the sofa…. Chance of me ever getting him to learn that sofas are for humans not dogs blown completely then!

Adam misses Bailey and cant wait to get to see him again, and for anyone who wants to know, Nell had a pee on a proper toilet this morning…… Never let it be said that the updates don’t bring you the big stories and the latest news, as it happens! Sky News ? PAH!!!!

Love to all.

Colin

Today is Adams Transplant anniversary, it was at around 7.25 pm on this day in 2001 that he has his bone marrow transplant, we watched Coronation Street together as I recall!

It seems such a long time ago now and this week has served as a reminder of how this disease can plat havoc with your life.

On Monday, having had a couple of weeks to prepare himself for the onslaught of another round of intensive chemo, Adam went into UCH for what was expected to be a months in patient stay for the chemo.

The docs said that in fact his body probably wouldn’t survive the treatment so after a lot of head scratching and some ‘one hand doesn’t know what the other hand is doing’ moments, they agreed that they would give him some chemo that he could administer at home instead, he was pretty delighted by this as you can imagine.

His platelets have been very low, apart from the fact that they are the first things to go when the disease returns, the Dasatinib treatment is know to knock out platelets, I took him in on Wednesday for a platelet transfusion and his counts showed that he was neutropaenic, I asked the nurse to request that he be given a shot of GCSF, this is a special drug that boosts neutraphils in the blood.

The registrar on call refused to give him a shot of GCSF and we went back home, by 4.30 in the morning of Thursday he was running temperature of 39.5 and we did the usual panic and eventually drove him into UCH in a very poorly condition.

Another day of frustration followed including placement on a 4 bed open bay on a surgical ward, (the last time he was on a 4 bed open surgical bay he got MRSA!)

Eventually by midnight and after some serious conversations to explain to the bed management team what our idea of customer service was, he had been settled in a room on T13.

He eventually got a pool of platelets, his count had dropped to 5 by then (normal range is 250 – 400). And overnight he finally got his shot of GCSF. Lo and behold this morning his neutraphil count was above 1.

Huge thanks to Julie and Rob who steeped into the breech and took Bailey to theirs where he is enjoying the company of their 2 Alsatians and probably being taught some dog manners, it is this time of year that James celebrates his transplant Anniversary too so good on ya mate!

His chest is not entirely right and he clearly has some infection so he is likely to be in hospital for a few days at least while they get on top of it. As of this evening he was feeling a lot brighter as he had been given a blood transfusion which always lifts his energy levels.

Watch this space!

Love to all

Colin

please drive carefully

On the pretext of Sarah having arranged something for him, we woke Adam early yesterday (well, early in his world) and dragged him kicking and screaming into the car, he was perplexed as I was going on what he thought was to be a day out with Sarah but I pointed out that he could take some tips from an old man!

And after we’d travelled a couple of hours to Bedford, he saw signs to the aerodrome and said, ‘dad, I’m sooo not going to do a parachute jump!’ after some whinging we let him in on the fact that if he spoke nicely to the guy at the aerodrome, he might just let him drive around it in a 911 Porsche at more than twice the speed limit.

If you’ve ever been in a car with Adam you’ll know that bein above the speed limit is nothing new, in fact his licence is well decorated to prove the very fact!

Nonetheless he was impressed and excited by the notion and wondered who would be daft enough to lend him a car to go mad in.

Enter the guys from Palmer Sport… Mick Maggio, one of their main men, took Adam round their workshops, showed a few cars and then said the words that he is unlikely to ever hear again…

Adam, you are going to drive a 911 Porsche and then a 420 horsepower XKR Jaguar and we want you to go as mad as you can!

As you can see, if you are looking at the blog www.adamhornblog.blogspot.com he took Mick at his word!

MORE.....

Then, after driving the cars around and losing a few mm of tyres in the Jag, the Stig arrived and took Adam then Sarah and I round in a LeMans prototype racer!

It is impossible to describe how it felt to be driven so fast, so well and to stop so fast that your eyes want to pop out of their sockets. As the instructors told Adam, we are either accelerating or braking, never just coasting!

The biggest of thanks go to Jonathon Palmer and the team at Palmer Sport in Bedford Autodrome, in particular Mick Maggio who gave up his lunch and a big part of his day to put a huge smile on Adams face.

Next week Adam goes back into UCH for some intensive chemo, this is likely to involve an initial stay of around a month and then we’ll see how he’s doing, the disease is beginning to show itself in his counts at the moment and the Prof feels that this is the best course of action. Watch this space………..

Anyone want a dog for a month?

Love to all

Colin

easy does it

OK, OK, I’ve had enough of the ‘you haven’t done an update for ages’ comments so I have put finger to key and typed the following…

We are in something like the eye of the hurricane at the moment, Adam is generally feeling pretty good, spends much of his time keeping Bailey from jumping on the sofa, well trying to at least and adding various bits and pieces to his car, apparently the big tube thing now sticking out of his rear bumper is his new custom exhaust pipe which is vital to make the car go better. The ice cream cone thingy under the bonnet is an induction kit to make it go faster and the new hifi which can break windows from a hundred paces is to make it go noisier.

Bailey has managed to chew most of the house now and I’m not at all disappointed by the new wallpaper in the day room being his favourite chew toy, the cable TV remote looks so much better with bite marks than it did before!

We had a little scare recently when he got in drunk one night, started throwing up blood in a big way, like a horror movie and ended up in an ambulance on the way to the local hospital, 3 days later and the docs confirmed that his gullet was irritated by the various drugs he’s been having and was bleeding which was the cause of the huge blood clots he threw up, some rest, a few of the NHS’s finest platelets and some more drugs and he came home, tired but feeling better.

His new hobby is ordering things on the internet, having them delivered when we are all out (during which time Bailey is chewing the furniture) so they get taken back to the depot and I then go to pick them up. It’s like Christmas every day in the house as boxes and packages arrive almost daily.

And if anyone sees my brand new mountain bike being ridden by a scroat in the Ewell area please feel free to go and knock him off it, anyday now, it’ll have been stolen for longer than I actually owned it! Still, whilst i was driving round Ewell to find the perp, having someone run in to the side of me took my mind off it quite well. reckon i'll stay indoors for a week rather than try my luck!

Love to all

Colin

have bailey will travel

for as long as I can remember Adam has wanted a dog, and for as long as I can remember I've resisted him getting one.

anyhow..... just to prove that even an immoveable object can move sometimes, meet the new love of Adams life... Bailey.

Adam has now finished hte latest round of Chemo, the prof added one extra dose for good measure, not quite buy one get one free but something like...... this weeks counts were a slight improvement from the previous weeks, perhaps a smile on your face really can affect your state of health!

Adam update 22 September

It’s been a while since I did an update, mainly because we have been a bit full on with various things; Adam managed to make his birthday last about 2 weeks which makes up, in part, for it coming so late in his 21^st year.

He had a ball at his party and we followed up with a family do which followed Nell’s Christening and Dan’s 40^th then Johns Memorial. I seem to have spent much of September with table and chairs in the boot of the car!

Although he is feeling well at the moment, the effects of the latest chemo are just beginning to make themselves known and we are hoping that he will manage to get through this round without becoming neutropaenic. He doesn’t need to get an infection right now!

The last MRSA test was clear so we hope the next is too, he needs 3 clear swabs before he is pronounced properly clear.

So we watch and wait, his blood is doing the right thing but we now know the leukaemia is back in his marrow so we pray (well I don’t pray but you get the gist) that the chemo has the right effect this time.

Love to all


Colin

Mr Horn's 21st+1 Champagne & Hollywood

So, Adam determined that he wanted to celebrate the 21st birthday that he didnt get to properly celebrate last year as he was in Intensive care at the time, so he took the opportunity to have a combined 21st and 22nd party, his birthday isn't actually until the 13th but hey ho, he never let the facts get in the way of a good party!

29th August, one step forward..... 2 steps back

o the update

Update to the update

Saw the prof yesterday and sadly, the more substantial test shows the morrow to have blast cells in again.

The cells appear to be of the AML type rather than the existing ALL type so there are some big decisions to make pretty soon.

Déjà vu?

Love to all

Colin

Friday 23rd August

Apologies if this takes a while to get around, dad’s away this week so the normal distribution method is not in place.

Adam had a consult this Tuesday with the prof and we got the results of the initial test on his bone marrow aspirate from last week, this test showed no bad cells which is excellent news, we hope to get the results of the detailed chromosome test next week and if this too is clear then we can once again breathe a small sigh of relief for a while.

The prof was quite surprised and he said that they are not sure exactly what has done the trick but he thinks it is the Rituximub antibody treatment and so they will review the ongoing treatment next week.

It’s a fine balance between increasing the dosage of the drugs which has a detrimental effect on his bone marrows production of normal cells such as platelets and ensuring that a high enough dose is given to keep the disease at bay.

In addition, we are keen to use any window of opportunity whilst his marrow is normal to try and get some further healing on his exposed heel bone to his right foot. The hyperbaric oxygen option is still being considered but at £20k or more one gets the feeling that cost may be an issue for the health trust. Other possible new options are to use a platelet rich compound that uses donor platelets in high concentration applied to the wound to try and stimulate the growth of new tissue.

It’s all complex and a very finely balanced situation. But for now at least, his focus is on planning for his birthday so his mind is focused!

Our thoughts go out to Dan, Karen and Kay at the moment, Dan’s dad passed away yesterday, he and Kay managed their dream of giving up on the rat race, moving to Australia and living the life they wanted, how many of us truly get to do that I wonder? John.. good on ya mate! We’ll chuck another shrimp on the barbie for you…..


Love to all.

update thursday 16th august

And this time we waited till the docs said we could go!

Adam was discharged yesterday, there has been a bunch of activity over the past week or so, not least because we found that he had contracted MRSA in his foot whilst in hospital!

He came off the I/V antibiotics on Tuesday and had a bone marrow aspirate taken yesterday before we left, there results of the aspirate will determine how he is doing with the disease. Fingers are crossed all over the place as you imagine!

Watch this space………….


Love to all

Colin

gis a beer

Adam asked to leave hospital on Wednesday last week as he was bored and fed up; the docs were reluctant as they felt he should have had a day in after the IV antibiotics stopped to allow for some observation.

He had a pretty good day Thursday and went out with a mate for a drive, whilst stopped in a car park they watched a guy who was clearly high on drugs dancing like a loon, he come over to them and spoke for a moment before swinging his carrier bag with 6 cans of beer in it straight into Adams face and then running off.

So Adam looks like he’s done ten rounds with a boxer and his modelling days may be numbered, some people do get it hard!

His facebook entry says, ‘Adam is bruised and recovering from a face full of Stella – Literally!’ he doesn’t want a fuss made over it though.

His foot got progressively worse over the weekend and he has been in a lot of pain with it, we decided this morning that although he didn’t have a temperature, he should go into UCH for further treatment.

So back in for a few days, this time we might wait till the docs say he can go…. And as I write a have just received a text from Pauline to say that he spiked a temperature at 7.30 this evening so the infection is trying to take hold

On the subject of his heel which has gone backwards significantly since his chemo, I had a long talk with his foot doctor this week and we have been trying to find creative ways to grow new tissue in a guy who has no bone marrow, there is a possibility that if we can get it funded he may be able to use the hyperbaric oxygen chamber in London that is used to treat divers with the bends, apparently the increased rich oxygen that is forced into the blood can increase the quantity of a particular type of cell that he needs to start the repair process.

Watch this space

Love to all

Colin

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

Colin

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.


Colin

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

Colin

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


Colin