[Big Jim]

Originally Posted by NXEA!

Really moving stuff there Big Jim, I hope everything works out for the best for you, your little boy and your family, can't imagine what you're going through right now. I just did the SMS donation thing, good luck with everything buddy.

Thanks very much NXEA for the donation and wishes. He's currently on day 6 of his conditioning. Only a few days to go before the new cells go in.
thanks again

[OMGitsDAVE]

Wow, that's all I can say.
Best of luck to your little boy, and to your family equally.

I have donated, and hope it helps.

[Big Jim]

Originally Posted by OMGitsDAVE

Wow, that's all I can say.
Best of luck to your little boy, and to your family equally.

I have donated, and hope it helps.

Thanks OMGitsDave. very much appreciated

[stevefreestone]

Oh blimey. My little boy has acute health problems but is currently stable so I know how you feel. Will donate ASAP.

[Big Jim]

Originally Posted by stevefreestone

Oh blimey. My little boy has acute health problems but is currently stable so I know how you feel. Will donate ASAP.

Sorry to hear of another sick boy, though it's good he's stable at the moment.

Of all the things in life, the most important are the health of your children I think. Then obviously your own and spouses. So you obviously share the same horrible feeling

Best of luck to you all for the future.
--- old post above --- --- new post below ---
Currently on day 8 of his conditioning Chemo and just started being sick poor thing.

Thursday is the big day for his new stem cells.
--- old post above --- --- new post below ---
New cells going in today in two hits. ONe at 10.00 a.m. one in the afternoon. Going to be interesting experience.
--- old post above --- --- new post below ---
Had the bone marrow transplant on Thursday (see pic of it happening).
Had a bad morning yesterday with suspected appendicitus, but currently ok, just a bit groggy and being sick, etc.

--- old post above --- --- new post below ---
Just heard that there'll be a piece in July's Railnews with a photo, etc.

William's still quite well on 3 days post transplant. A bit of a dry cough, nose running and sneezing, but doesn't seem overly viral.
--- old post above --- --- new post below ---
Currently 7 days post transplant.

All still seems ok, and he's better than we'd expected.

Hopefully his blood counts will start to recover at day 10 (Sunday).
--- old post above --- --- new post below ---
Day 9 and continous fevers. Paracetamol currently doing the trick. Just hoping we won't be heading to intensive care any time soon.
--- old post above --- --- new post below ---
Thanks for the donation last night
I really appreciate it.

Day 10 today, and though he has Fevers, he's still in the Royal Marsden (and not in intensive care) which is good.

From now onwards it's possible for his blood counts to begin to rise. We just have to hope it happens (and happens soon).
--- old post above --- --- new post below ---
Now on day 12 post transplant and everything still seems to be going in the right direction. Though he's still having fevers, they are less frequent and his health is slowely improving it seems.
Picture from 2 days ago.

[AdamW]

Pleased to hear that it sounds as if everything is going in the positive direction. Obviously you cannot count your chickens before they hatch and all that, but it is good to hear some positive news

. Don't worry if we'd don't seem to respond to these posts, they go get read and it is good to be updated, especially when the news is positive

[tsr]

Originally Posted by AdamW

Pleased to hear that it sounds as if everything is going in the positive direction. Obviously you cannot count your chickens before they hatch and all that, but it is good to hear some positive news

. Don't worry if we'd don't seem to respond to these posts, they go get read and it is good to be updated, especially when the news is positive

Exactly!

[RBF]

Big Jim,

We would send you a private message but unfortunately we haven't posted enough to do so.

It is great to see and hear that William is doing well and treatments are working.
We just want to let you know that we are here to help so please give us a call if you need anything.

All the best,

RBF

[Big Jim]

Originally Posted by RBF

Big Jim,

We would send you a private message but unfortunately we haven't posted enough to do so.

It is great to see and hear that William is doing well and treatments are working.
We just want to let you know that we are here to help so please give us a call if you need anything.

All the best,

RBF

Thank you very much, will keep that in mind.
--- old post above --- --- new post below ---
Day 13 and all still going ok.

Thought I'd post a picture from yesterday in which he's looking a little better (though still tired and no-where near his usual strength). Can see how the drugs have made him lose his hair again.
My ride will be (have told it will be) in Rail News this June.

--- old post above --- --- new post below ---
Day 13 and all still going well. His WBC = 0.4 and Nut = 0.1, so all is good. He has a few funny red spots, but nothing to really worry about at the moment.

As an aside and to get back to Railway matters. Well done to the team working on the Signalling cable diversions at London Bridge (Thameslink). Stage 7 was comissioned again with no problems on Sunday. Usually it's only when things go wrong that these jobs are ever heard about, so this shows that all went well. I was part of the team mentoring and checking the staff/ work and they all did really well. It's nice to see jobs go in with little problems due to the careful planning and execution, etc. So a double smile for me today.
--- old post above --- --- new post below ---
Thought I should post this video. It was tweeted by the Anthony Nolan Trust and I feel it's a very powerful message in its own right.
please watch it if you have a moment. I really hope in years to come that we (including WIlliam) can meet the donor also
http://www.youtube.com/watch?v=g0dgaCQ1PFY
--- old post above --- --- new post below ---
Just a quick thank you for the last donation. It makes me very happy when I see that someone has made the effort to go through and do the donation and support the cause. The amount is less important than the act. So I really appreciate you doing this and every amount helps for sure

William's counts have flown up today, but he's really not very well. It looks like Graft Verses Host Disease, which is the new cells attacking his body. They have to manage this such that the affects of this aren't too bad on the body, but you don't want to iradicate it as it will reduce the graft verses leukaemia affect which is the thing that we hope will cure William. i.e. you want the new cells to attack his cells such that they also attack the Cancer. A very clever thing using white cells as a cure. This is obviously a bit worrying, but they know what they're doing at the Marsden, so it's keep fingers crossed time even more.

[wijit]

Originally Posted by Big Jim

Sorry to hear of another sick boy, though it's good he's stable at the moment.

Of all the things in life, the most important are the health of your children I think. Then obviously your own and spouses. So you obviously share the same horrible feeling

Best of luck to you all for the future.
--- old post above --- --- new post below ---
Currently on day 8 of his conditioning Chemo and just started being sick poor thing.

Thursday is the big day for his new stem cells.
--- old post above --- --- new post below ---
New cells going in today in two hits. ONe at 10.00 a.m. one in the afternoon. Going to be interesting experience.
--- old post above --- --- new post below ---
Had the bone marrow transplant on Thursday (see pic of it happening).
Had a bad morning yesterday with suspected appendicitus, but currently ok, just a bit groggy and being sick, etc.

--- old post above --- --- new post below ---
Just heard that there'll be a piece in July's Railnews with a photo, etc.

William's still quite well on 3 days post transplant. A bit of a dry cough, nose running and sneezing, but doesn't seem overly viral.
--- old post above --- --- new post below ---
Currently 7 days post transplant.

All still seems ok, and he's better than we'd expected.

Hopefully his blood counts will start to recover at day 10 (Sunday).
--- old post above --- --- new post below ---
Day 9 and continous fevers. Paracetamol currently doing the trick. Just hoping we won't be heading to intensive care any time soon.
--- old post above --- --- new post below ---
Thanks for the donation last night
I really appreciate it.

Day 10 today, and though he has Fevers, he's still in the Royal Marsden (and not in intensive care) which is good.

From now onwards it's possible for his blood counts to begin to rise. We just have to hope it happens (and happens soon).
--- old post above --- --- new post below ---
Now on day 12 post transplant and everything still seems to be going in the right direction. Though he's still having fevers, they are less frequent and his health is slowely improving it seems.
Picture from 2 days ago.

That is a beautiful smile there, I cannot wish you any more than the best life has to offer.
Donation made, more as soon as I can. Much love to you all.

Can I just add that if we use the "Gift Aid" (which comes in the form of a reply if donations are made by text) a further 25% is added to your donation, therefore £10 is worth £12:50.

[Big Jim]

Originally Posted by wijit

That is a beautiful smile there, I cannot wish you any more than the best life has to offer.
Donation made, more as soon as I can. Much love to you all.

Can I just add that if we use the "Gift Aid" (which comes in the form of a reply if donations are made by text) a further 25% is added to your donation, therefore £10 is worth £12:50.

THank you so much wijit. You're quite right about the gift aid. I think Justgiving take a small cut from the gift aid amount, but if you donate £10 you are donating £12.50. Also my company NR actually match the donations with donations to Action for children. so a £10 donation is £10 + £2.50 + £10 (NR). though NR only match up to £1200 I think.
Thanks again for the support
--- old post above --- --- new post below ---
We had a really worrying night. His rash vastly worse, lips swollen, hi respiration rate (liteally panting), sats dropping, fevers, etc.
Dr's were very worried at around 1.00 am and called on the "on call" consultant to come in, and the intensive care retrieval team were ready to come. They decided to try Steroids as it could be graft verses host, and that seemed to sort him out. His White blood count is now 4, with 3 neutrophils. So, they think that the rapid engraftment has caused this reaction and the steriods basically surpresses the immune response (and why he improved).

Here's a picture:

--- old post above --- --- new post below ---
He's a bit better today. Though still having problems with his Oxygen Saturations.

I think Bone Marrow Transplants are really rough on the little bodies and the kids can go through a lot of pain with Mucositus from the Chemo. I think this is what drives me to want to help find a non intrusive cure so that the poor little kids won't need to go through this horrible pain.
--- old post above --- --- new post below ---
William's rash has much improved and we're now thinking that there are three seperate rashes, one from the graft verses host syndrome (the speed of his new blood cells rising in his bone marrow has a chemical byproduct that causes a rash, leaky veins, and difficulty breathing). An allergic reaction to a drug called Cyclosporin (which has since been withdrawn), and perhaps a few chicken pox (which has come back whilst his counts were down). But anyway, he's looking much better than a few days ago and without fevers, so hopefully the Dr's will today reduce his steroids further (which are making him grumpy) and the large number of Anti-biotics and anti-fungals from today onwards.
--- old post above --- --- new post below ---
We were in the June Railnews today (if anyone gets it). Was good to be in something that I've read for many years.


Today William is slightly better again. Nothing dramatic, just looking a little better. Symptoms reducing. still has a rash, but adema (leaky veins) seems to have gone. To give an idea, yesterday he was 15.15 Kg's. Today, he dropped to 14.4 Kg's. So that's basically water retention.

It's looking like, if all goes well he'll be home in 10 to 14 days. I can't wait
--- old post above --- --- new post below ---
William continues to improve

Hopefully he'll be coming home soon. See the picture of him playing this morning.
--- old post above --- --- new post below ---
Currently the plan is, home leave this weekend. then if he's well on monday, he'll be discharged.

All this can change at a moments notice with a fevers, but so far, very good.


Today he's started eating again which is another bonus

[Deltic1]

good luck!!

[Big Jim]

Originally Posted by Deltic1

good luck!!

thanks

We Managed to get home today for weekend leave. Hopefully discharged properly on monday if all goes well

Here's a pic of us leaving

[ANorthernGuard]

Originally Posted by Big Jim

thanks

We Managed to get home today for weekend leave. Hopefully discharged properly on monday if all goes well

Here's a pic of us leaving

I haven't donated (yet) as to be honest I never know what is true or not anymore (no offence intended) (I will be doing so in a week, i.e. payday).

But until then may I wish the lad all the health and happiness in the world and any kid who can concentrate on playing a DS without anything else bothering him in that moment will deffo be on the road to recovery, all the best and best wishes go to you and your family.

[Big Jim]

Originally Posted by ANorthernGuard

I haven't donated (yet) as to be honest I never know what is true or not anymore (no offence intended) (I will be doing so in a week, i.e. payday).

But until then may I wish the lad all the health and happiness in the world and any kid who can concentrate on playing a DS without anything else bothering him in that moment will deffo be on the road to recovery, all the best and best wishes go to you and your family.

No offence taken, I know exactly what you mean. You have to be careful when you see things out and about. Last weekend I was going to put a couple of quid in a pot, but then was uncertain about the authenticity so didn't.
Only thing that helps in this case is that Justgiving is a reputable site and the money goes directly to the charity. Infact if you're a tax payer, by ticking a box you can give 25% extra. so £10 is really a £12.50 donation (though justgiving take a small cut out of the 25% to cover their costs). But the charities actively promote using them. It's easier for people like me also, as I don't have to deal with any money

We appreciate all donations very much as Assisting the boffins doing research is the only thing I can do to help find a non-intrusive cure. Chemotheraphy is a very strong drug and though it cures lots of children, it's side-effects can be very serious in both the long and short term.