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

ADAM UPDATE Friday 29 June

Spent most of today in UCH with Adam for a bone marrow aspirate, he had a blood test on Tuesday which showed his platelet level to be very low, hopefully there will be an innocent reason for this but as ever, we’ll spend an anxious few days waiting for the initial results and hoping they are clear and then a further few anxious weeks waiting for the results of the chromosome test

He has been using his leg in conjunction with crutches and is managing quite well, he walked into the pub recently which is something he has avoided doing for ages until he could actually walk in himself, the new leg is very realistic and has one of his trainers on it, the bad foot has a weird shoe on it so everyone assumes its that one that’s got something wrong hence the crutches!

So, once again, we sit and wait, try to be normal and get on with life……

Love to all

Colin

dumballers return

Hi all

I know, I know, I was supposed to send updates on the move from the rally but I left the laptop charger in a hostel early on so that put paid to a lot of my great ideas!

We had a ball! The week went like a flash and the car got us there in style and in good form.

It’s impossible to write enough to fill everyone in on how the trip went but suffice to say that Adam had a great ime, he enjoyed meeting all the people and visiting the various places!

I have uploaded the photos I took last week to an album at http://picasaweb.google.co.uk/colinhorn1/Dumball

I make no apologies if any of the photos are considered distasteful or offensive, that’s part of the plan with the Dumball!

Adam had his stump cast on Monday and we hope that he’ll have his initial leg fitted next Monday, he is really excited by this as it is the start of the return of his independence

Love to all

Colin

Istanbul at last!

We've arrived at Istanbul!

The journey was interesting to say the least, a nember of cars have already been left in Bulgaria becuase of difficulties wiht disposing of them in Turkey and the number of ingenious plans has been awesome!

we have now come up with plan 423B/2a and will put it into action tomorrow!

Adam has been brilliant, he's struggled being in the bus wiht the old farts at times but generally he's enjoyed it i think

sorry i havent posted recently but the laptop mains supply has disappeared so I havent been able to do anyting until i got to this hotel!

love to all

greetings from Budapest

June 12

It’s 6.30 UK time and I’ve just woken Adam from his pit after a 1.30 a.m. finish last night, he seems to have remembered that his liver is evil and must be punished so he has been imbibing on the local beers each night.

The rally has so far been great fun, an 11 hour drive the first day to get us into Prague, it shouldn’t have taken that long but with 22 vehicles, all quite old and costing very little there are numerous stops along the way, we lost one Vehicle somewhere in Germany when the Rave Rockets Scorpio decided to lose weight by shedding most of its engine, still the guys jumped into someone else’s car, gave some Euros toe the tow truck and they will never see the car again.

The entry into Bratislava was with a full police escort, stopping traffic and shutting roads to let us through, now we know how Royalty feel! The exit from Bratislava was with the escort again and this time Adam rode shotgun with the police in the mid car.

We are now in Budapest and just about to go to find some breakfast, on a couple of the night we have had to book into a hotel as the hostel’s don’t have great facilities for wheelchair access and there are only so many stairs I feel like lifting the chair and Adam up! So the accommodation has been ok so far.

Will try to post more information soon but it is quite difficult, the main dumball website has a link to the live update site and can be found at www.dumballrally.org.uk

Love to all

Colin

dumball ready to go

Have just arrived at the Ibis in Brussels having had a late start and lunch in Brugge, the van got to just over 100 miles per hour even loaded wiht 3 lardy blokes and Adam!

we have met with the film crew and are planning to go out with them tonight for dinner to learn how to sppeak american, (they aren't allowed to admit to being American so we are saying they are Canadian.

Am using a webmail service whilst away so cant spell check properly, apolorgeees for the bad spooling!

will try to update regularly.

love to all


colin

DUMBALL - good to go!!!!

Adam went to the hospital yesterday for a follow up blood test and Pauline rang me to say that his platelets had dropped a lot and that the prof wanted to increase his Dasatinib and start steroids as a precaution in case the leukaemia was coming back, he also requested that we go back today to get the results of the blood film test that looks for blast cells in the blood.

Not much sleep last night as you can imagine!

To cut a very long story short, the blood film was ok and the steroids have been stopped again (use of the steroids stops the healing to his heel) and we are good to go for the Dumball on Friday.

If anyone has spare money they don’t need then you can donate to the Dumball at either www.justgiving.com/colinhorndumball or www.justgiving.com/dumball if you use the latter then please mention Adams apples when pledging.

I will try to do some updates during the rally but hopefully we’ll be too drunk, too busy, too tired etc…..

Love to all

Colin

dumball beckons

Sat 2nd June

It’s now less than a week before we set off for the Dumball rally and Mac and Alan come over to apply the new finish to the car, Adam had bought a number of bits and bobs for the car so we spent the afternoon changing it from bog standard Fiat red to something slightly more noticeable!

Adam has been training to walk with just crutches for emergency reason just in case when we are away we need to leave somewhere in a hurry in case of fire etc. he called me whilst we were doing the car and I turned round to see him standing at the front door in his crutches, how cool is that!.

We have a meeting on Tuesday with the prof and on Wednesday with the E N T crew so barring any nasties we are good to go on Friday… watch this space.

Thanks to all who have donated, directly or indirectly to the rally effort,

Love to all


Colin