Boothby Coggles

An update for you. The bone marrow donation arrived yesterday afternoon, and was given to Jacob immediately, there being some suggestion that it had to be done by 7pm, rather than today as had originally been planned. I had been led to believe that it would not be bone marrow as such, but the required constituent(s) of the donor's blood, however it was bone marrow for some reason. The donation was a good deal thicker than GOS had probably encountered before, causing problems in getting in to Jacob. The pump that is used to do the transfer could not cope and the line suffered from air locks. A new line was fitted which made things better, but for some reason the transplant team decided to do it by hand, pending their coming up with another solution. It would normally take about 3 hours with the pump so I imagine that the "hand" method would have taken too long. How they resolved it I don't know, but they finished it in time. Unfortunately during the switch of pipes etc. about a teaspoonful was spilled and lost. They apparently needed every drop so this was not what they wanted. However, the donation was about 7 or 8 times stronger than the minimum level needed and, according to my son, the medical staff were excited and over the moon about it. Maybe this will more than compensate for the loss. However, to make sure that every possible drop was put to use they put the old line in to the bag to use whatever was trapped in it and also washed the bag to make sure that nothing was left behind. So, it's now a waiting game for about 12 days or so to see if the sample has taken, and starts rebuilding Jacob's system. Thank you a million times to those of you who have said you'll register for the Bone Marrow Register or are thinking about it. If you're eligible please give serious consideration to making yourself available, it could save someone's life. Thank you again. Boothby i

Thank you all for your interest, best wishes & support. The prospects for Jacob are good, especially as a match was found within a matter of months. For others though there is always the possibility of a long wait for a match. More donors will help to give a better chance for those in need. Thank you again

Hi Iceman. I'm not fully up with the donation aspects, but the bone marrow trust site will certainly tell you more than I'm able or qualified to. I'm not sure about whether you can give more than one donation. I don't see any reason why you shouldn't but I suppose the chances of 1 donor finding multiple matches is not very high. Either site is probably as good as the other, although the NHS site MIGHT need you to attend at a blood donor's session, whereas the bone marrow trust will send you a kit which you just post back.

I know what you mean - I'm over 60 so not eligible. Apparently it costs too much to use donors over 40yr, and I imagine that as my grandson's donor is 44 and his sample has reduced the match from 100% by 10% age also plays a part in the probability of a successful outcome. There is also a 10% reduction as the donor is not of the same family. So for Jacob the match, although theoretically is 100%, the reality is 80%. Hey Coggles, had a good look through the site & it would be something i would be intrested in, do you have much knowledge on the subject as i have a few initial questions, Donating isnt something i really thought about untill my partner had our second child, she lost alot of blood & needed a top up so to speak, it was at that point it made me realise how important things like this are for the inoccent soles in our society to survive. You have my best wishes for your family x In all honesty I can't offer you much info about the actual donation procedure, but the signing up is very simple. You get a kit to provide the initial sample, (saliva I believe), & send it back to the Bone Marrow Trust who have it tested and then the information drawn from on it is kept on record. It's quite likely that you may not be called to give an actual sample for donation for transplant for some years or maybe never. It all depends on whether the recipient and donor's shoudl match. I think that at one time the actual bone marrow was taken from the donor, which I'm lead to believe is pretty painful. However, in Jacob's case Gt Ormond St are applying a fairly new procedure, where only blood is taken from the donor. The necessary constituents are then taken from that sample and this is what is used for the transplant. So for the donor, it's not a great deal different to going to a blood donor session to give a pint.

We, as a family have been living with it for about a year, since it was first diagnosed. Jacob suffered from bruising to his knees & legs just by crawling across a carpet! Also he's had to make very frequent trips to hospital at Nottingham to have his blood platelets topped up, to keep them at a level whereby he wouldn't suffer from spontaneous bleeding from wherever on his body it could, e.g. eyes.ears, in to his brain & so on. When you get something like this close to home the first thing you do is find out as much as you can. (The internet can be a blessing, (but also a possible curse?), when your faced with something where the possible outcome is so awful.

I know what you mean - I'm over 60 so not eligible. Apparently it costs too much to use donors over 40yr, and I imagine that as my grandson's donor is 44 and his sample has reduced the match from 100% by 10% age also plays a part in the probability of a successful outcome. There is also a 10% reduction as the donor is not of the same family. So for Jacob the match, although theoretically is 100%, the reality is 80%.

My 18 month old grandson is currently in Great Ormond Street Hospital & will be there for about 3 months. He has just finished a 5 day very intense course of chemo-therapy in readiness for a bone marrow transplant. As I'm writing this the donor's sample is on a plane somewhere over the Pacific from Australia where the donor lives. It should arrive tomorrow & he'll get it. I'll not go in to great detail about what he's suffering from, other than to say that it's a genetic condition that affects his blood, making him liable to spontaneous bleeding and high vulnerability to infection. Without the transplant he would not be likely to live beyond the age of 8. If you want to know more about the condition, it's called Wiskott-Aldrich Syndrome & you can read about it at: http://rarediseases.about.com/od/rarediseasesw/a/012905.htm but it's a bit technical. There is a website: http://jacobgiles.wordpress.com/ about my grandson and will give you some idea about what he's been through, and how the Wiskott-Aldrich affects children. We are fortunate in that a donor was found fairly quickly and, theoretically is a 100% match. However that figure is reduced because the donor is 44yr old. The younger the donor the better. I'm not after your money, blood is what we want. There are not enough people signed up to the bone marrow in the UK, which is why the bone marrow sample is having to come from Australia. This is not uncommon, my son tells me that for other cases samples have had to come from the U.S. as well. There is a link on Jacob's website to the NHS blood donor service, but you can also contact: http://www.anthonynolan.org.uk/donating/howtojointheregister to register as a donor. If you do sign up you must be under 40, and agree to stay on the register until you are 60yrs old. When signing up they will send you saliva kit for a sample, that's all that's needed initially. If you are eligible please give very serious consideration to being a donor. Thanks very much for reading this, and if you do sign up you'll have the everlasting gratitude of those and there families who might benefit from you generosity. Boothby

Have a look on the Lexus web site: www.lexus.co.uk - it gives an address for the Lexus Contact Centre - and a number: 0845 129 5484. You should have had, when buying the car, a fancy grey coloured ring back document holder, with details of The (Selling) Lexus Centre & other numbers. This gives the number for the Lexus Contact Centre as 0845 278 8888. You need the Customer Service Dept. Don't hold you breath tho'. They ought to be called the Lexus Non-Service Dept. Many people have been dissatisfied with them. I had issues with the '06 200d I bought in Dec '08 & wrote to them in May '09 when they wrote back to say they had referred it to the dealership, (where the problem was), and said they, (Lexus CS), would write back to me. I'm still waiting for the letter! Good Luck

I would have kept it longer than I did, (until April), and would more than likely still have it now. I think the car would have been more "driveable" with the replacement gearbox, although the car generally was something of a disappointment against Lexus reputation. About the time the box was changed I had taken an option on a 250 auto of the same year, ('06), but when I saw it I didn't want it mainly due to the state of the paintwork; some fairly large stonechips which had been badly touched up with paint, (by the previous owner probably), that didn't colour match very well at all. This was at the same dealer. I could have taken the 220 back to have the steering bushes done but, as I said, I'd just had enough by then. Also, if I'd had the 250, would I have had similar problems with shoddy repairs/servicing? In a way they did me a favour on the 250 - they wanted something like £4k to change, and I got my current car, ('57 plate), for less than £1k ctc, which included fitting parking sensors for £250, and I really enjoy driving it in a way that I didn't at the end with the Lexus.

Thats quite unfortunate was it the service that you got or the overall brand that made you choose not to have another lexus? Wat happent with your deisel pal? I had a great row with the selling dealer, which is very close to my house. After that I would never take it back there & went to another one about 40 miles away. This was May last year & I'm stll waiting for a promised letter about it from Lexus Customer Services. The 2nd dealer fitted a modified selector fork to my car to improve the change up to 3rd. About 2 months later I saw a pool of oil under the car. My son in law put it on the ramp at his garage and said the leak was coming from the input shaft seal. It was carted away & the repair "fixed", but in cold weather in December last year it took a great deal of force to select 1st & 2nd from a cold start, but came right after about 10 minutes or so of driving. So it went back & had a thinner oil in the gearbox. It was a bit better, but not much. When it went in for service it had the alloys replaced because of corrision. When I got it back the metal valve caps had been replaced with black plastic. A very trivial issue I know, but it is, to me, indicative of a lack of customer service and care. I'll give the dealer credit for swapping the gearbox for one from that they had on the pitch, which was better than the original. This was done at the same time as the steering rack recall was carried out. However, the steering was not right when I got it back. It was very "twitchy", and I didn't feel safe with it. I understand, from someone else in LOC that new steering bushes would have put this right, but I'd got to the point where I hated driving the car and I'd had enough & flogged it.

I know that (Some?) BMW dealers end their techs on courses. My son in law has been on every one going, so I imagine that it's probably the same with other premium brand dealers. However, some may try to cut costs and not send all of their techs on every course needed - they cost the dealers a packet. Also, when a dealer takes on a new tech, say from VW to Lexus/BMW/Merc or other, it may be some time before they get on to their 1st course to learn the particular intricacies of another brand. Not all Lexus dealers are good. I got rid of my 220d after it had been in to the workshop 3 times, and came out each time with another problem caused by, or during, the work that had been carried out. Ironically, I had a call from their sales dept this morning, obviously trying to drum up trade. They were told in no uncertain terms that as far as I was concerned the Lexus brand has been a big let down & I will never have another one.

apparently not. Not for me anyway. I shouldn't be forced to crank up my stereo and pretend its all good! By the way, whe the rattles started in the beganing while I have music on. I almost though I blowed my speakers at Vol 18! exactly, with the money you paid for the car I agree it should be right, turning up the stereo shouldn't be necessary... i am a lucky ish 220D owners as the only annoying bit it the squeeky seat which there is a simple fix for but i havent got round to doing it yet. cant be bothered to be without the car for a week whilst its at lexus for them to prob send it back the same...lol well changed my mind and rang lexus..........booked in friday, told will take half and hour to fix....proper helpful dealers... Lexus Hull Read the dealer reviews for Lexus Hull

NEVER EVER!

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