Stiliyan Petrov - and what I'm going to do about it

[Willy Dangle]

Crack open the Bubbly. He was released last night. We still have to go back for 2 a week appoinments + have to be careful about Virus's/ infections. But it's still a big milestone in his treatment

POP........... Great news.

Well done William, see you at The Amex.

 

[Big Jim]

POP........... Great news.

Well done William, see you at The Amex.

For sure.

 

[Big Jim]

Just an update on William.

He is still at home and hasn't spiked any fevers for ages now. He still cannot walk, but is able to eat more as time progresses + the fact he is still home is a good sign that things are going in the right direction.

 

[bravohotelalpha]

Lovely news to wake up to, so pleased William continues to make steady progress. Very best wishes x

 

[imissworthing2]

Don't know how I've missed this thread, but had not expected to be such a mess at this time on a saturday morning, tears streaming down my face. I cannot put into words the emotions I feel right now. The strength you and William have shown over the past months is simply awe inspiring, how you have coped with the ups and downs is beyond me.

I will say a prayer for you both at mass tomoro, that everything continues to improve and we get to see you both at the Amex in the not so distant future.

As mention earlier by Edna I think, I shall register for blood donation and give a donation by just giving today, what you're doing is inspirational. I almost feel proud of you, William and all the NSc posters who I have never even met.


Keep up the great work.

 

[Lady Whistledown]

It must be great for him to wake up in a normal environment, rather than in the same hospital bed. I saw your before (the treatment) & after photos of William on Twitter the other day & it really brings it home how cruel it must have been for him. It feels horribly unfair for something like that to happen to someone who can't possibly understand what's going on.

I (& I'm sure others) can't wait to see the photos when he's got his strength & hair back, & is well & truly on the road to recovery.

 

[Lady Whistledown]

As mention early by Edna I think, I shall register for blood donation and give a donation today what you're doing is inspirational. I almost feel proud of you, William and all the NSc posters who I have never even met.


Keep up the great work.

In case people don't know, the Anthony Nolan Trust are the people who hold the register of potential bone marrow donors. They (as are the National Blood Service) are desperate for new donors across the age range, but particularly for males aged between 18 - 30, which must fit the bill for plenty on NSC.

If you think it's going to involve blood tests and needles and hours of your time to register: don't. It's so easy, and there's no needles involved. You just go to their website, Anthony Nolan | UK blood cancer charity | Anthony Nolan
, and fill in your details. If you fit the criteria, they send you a saliva kit in the post, all you have to do is spit in the tube, seal it and send it back. They let you know within weeks if you're suitable.

Jim's little boy has been able to have his therapy thanks to some anonymous individual on that register...it would be awesome if a few more NSCers were motivated to get on it after reading Jim's story.

 

[Big Jim]

Don't know how I've missed this thread, but had not expected to be such a mess at this time on a saturday morning, tears streaming down my face. I cannot put into words the emotions I feel right now. The strength you and William have shown over the past months is simply awe inspiring, how you have coped with the ups and downs is beyond me.

I will say a prayer for you both at mass tomoro, that everything continues to improve and we get to see you both at the Amex in the not so distant future.

As mention earlier by Edna I think, I shall register for blood donation and give a donation by just giving today, what you're doing is inspirational. I almost feel proud of you, William and all the NSc posters who I have never even met.


Keep up the great work.

That's very kind of you

Giving blood is an amazing thing to do. I personally feel a debt for the shear amount of blood that William has received. I mean the first few times he had blood it was a big deal to us, but after a year and a half you sort of get used to it. But without people selflessly giving up their time to do it, children like William (adults too) would not survive. I'm booked in to do it again on monday. For men they've upped it to 4 times a year now. But for every person who gives blood after hearing William's story, that sort of takes a bit of the weight of burdan from me.

Thanks very much also for the donation. I'm hoping to crack the £6K figure at some point. Which will be 6 times more than I even hoped for, which again makes me very happy

 

[Big Jim]

It must be great for him to wake up in a normal environment, rather than in the same hospital bed. I saw your before (the treatment) & after photos of William on Twitter the other day & it really brings it home how cruel it must have been for him. It feels horribly unfair for something like that to happen to someone who can't possibly understand what's going on.

I (& I'm sure others) can't wait to see the photos when he's got his strength & hair back, & is well & truly on the road to recovery.

The pictures are quite shocking of him going through treatment. But I think the pictures also shows why research is so important. i.e. The disease is nasty, but to treat it is really nasty too. So I yearn for a simple pill that can be swallowed that will turn the persons immune system back on and fight the Cancer Cells - like it would do in a healthy person. This is what they're looking into at the moment with research. The only thing is I had a minor op when I was William's age and don't really remember much about it, and can only hope if he makes old bones he won't remember what he has been through. That is the small relief, but when he relapsed this year he couldn't even straighten his leg on full dose morphine for 6 weeks, the fact he won't remember in the future didn't make seeing him like that any easier.

The other thing is he is young and has a better chance of survivial than older children and adults. I mean the worst thing is seeing a 16 year old girl fighting AML last year. She should be out with her friends, not going through the treatment and also looking up the internet about what her chances are.

The whole thing is horrible and wrong and I think this is what drives me.

Having said that, the support of everyone makes things a hell of a lot better. So I really appreciate it

 

[Big Jim]

In case people don't know, the Anthony Nolan Trust are the people who hold the register of potential bone marrow donors. They (as are the National Blood Service) are desperate for new donors across the age range, but particularly for males aged between 18 - 30, which must fit the bill for plenty on NSC.

If you think it's going to involve blood tests and needles and hours of your time to register: don't. It's so easy, and there's no needles involved. You just go to their website, Anthony Nolan | UK blood cancer charity | Anthony Nolan
, and fill in your details. If you fit the criteria, they send you a saliva kit in the post, all you have to do is spit in the tube, seal it and send it back. They let you know within weeks if you're suitable.

Jim's little boy has been able to have his therapy thanks to some anonymous individual on that register...it would be awesome if a few more NSCers were motivated to get on it after reading Jim's story.

You can also sign up when you give blood.

William currently has donor stem cells in his body, but the truely amazing thing is this: No medicine is able to kill every cancer cell, yet Killer cell Lymphocytes can. So the process which William is going through at the moment, where the new donor cells are attacking his body are also killing cancer cells (I hope). This is why it works. So, no matter how much you pay for drugs, it's the gift of stem cells from a donor that do the trick.

This can easily be explained further by thinking what would happen if I took some of William's Leukaemia cells and injected them into my blood. Of course, my body would recognise them as foreign and kill them. Yet William's body couldn't see them as foreign, hence why the treatment is the bone marrow transplant which kills off William's old immune system and puts someone elses in. And hey presto.

very very clever, but the affects of the body are harsh. William will remain on penicillin for the rest of his life as his Spleen has been damaged by the chemotheraphy drugs to do this (this is the same for all patients, not just william).

So, when you sign up to be a donor and are selected to give the cells. You are providing hopefully providing the army of white cells to destroy the cancer in the patient. Now that is an achievement.

 

[Willy Dangle]

The pictures are quite shocking of him going through treatment. But I think the pictures also shows why research is so important. i.e. The disease is nasty, but to treat it is really nasty too. So I yearn for a simple pill that can be swallowed that will turn the persons immune system back on and fight the Cancer Cells - like it would do in a healthy person. This is what they're looking into at the moment with research. The only thing is I had a minor op when I was William's age and don't really remember much about it, and can only hope if he makes old bones he won't remember what he has been through. That is the small relief, but when he relapsed this year he couldn't even straighten his leg on full dose morphine for 6 weeks, the fact he won't remember in the future didn't make seeing him like that any easier.

The other thing is he is young and has a better chance of survivial than older children and adults. I mean the worst thing is seeing a 16 year old girl fighting AML last year. She should be out with her friends, not going through the treatment and also looking up the internet about what her chances are.

The whole thing is horrible and wrong and I think this is what drives me.

Having said that, the support of everyone makes things a hell of a lot better. So I really appreciate it

Hey Jim, I can relate to some of what you say. When I was 12 my cousin who was the same age as me went through a similar thing. It was hard for all of us and she was so close to death, but thankfully someone was smiling on her and she is now 42. I was too young to feel to much other than confusion, but when I read your comments it brings it all back and is still quite emotional. Unfortunately she lost the ability to have children but in the great scheme of things probably a small price to pay to keep your life. She is now the Godmother to my three kids and is certain to make old bones.

I have decided reading through this that I need to get off my arse and give blood, should have done it years ago but it has always been something that other people do. Gonna do it now though, promise.

 

[Publius Ovidius]

Hi Jim.

I have been following this thread for a while and sometimes it may come over as trite, but can I say how fantastic it is to hear that your lad is now home and although the chemo has caused problems, just having him here is more than words can say.

No one realises just how your emotions are when you have a child that needs care that only hospitals and extremely talented medical practitioners can deliver. We went through the worst day of our lives when laura was in hospital having a procedure that meant she was in surgery for 10+ hours. That was the longest day of our lives.

Many people will give you advice, but my one piece which our family live to ( after my brush with the almighty 2 Christmases ago) is live your life as if every day is your best. You have been given another chance and take it with all your might.

I am not a religious person, but if you are, may God bless you and keep you all safe.

Kind regards
Dave

 

[Publius Ovidius]

Just to add, unfortunately I cannot donate blood etc as I am on warfarin and statins, but I so admire people who can do this.

 

[Boroseagull]

Always make an appointment to donate blood whenever we return to UK [won't take ours in Spain]. We are back for our son's wedding next month so any NSC's at Peacehaven giving blood on 25 July I'll have my shirt on!
Glad to hear the progress reports Jim.

 

[Norman Potting]

Just as a final incentive you get a cup of tea, crisps and biscuits as well when you give blood! I am one donation off my Silver medal.

 

[Big Jim]

Here's a picture from earlier. He's starting to walk around using the chair. He also looks reasonably well all considered.

 

[Big Jim]

Unfortunately she lost the ability to have children but in the great scheme of things probably a small price to pay to keep your life. She is now the Godmother to my three kids and is certain to make old bones.
.

This is how I feel. A relative did say it'd be good if he was completely cured with no effects on the body, but exactly as you say "in the great scheme of things", I'd take life everytime.

Good on you for signing up.

I'm giving blood in Shoreham at the Shoreham Centre tomorrow

Also it's always good to hear stories where people have got through horrible things. Gives us all hope.

 

[Big Jim]

Many people will give you advice, but my one piece which our family live to ( after my brush with the almighty 2 Christmases ago) is live your life as if every day is your best. You have been given another chance and take it with all your might.

Absolutely. This is how I feel. Enjoy every minute of good health, as once you've (or a loved one) loses it you'll regret not doing those things you should have done whilst you could.

I know the feeling about operations Glad all was ok though.

 

[Big Jim]

Always make an appointment to donate blood whenever we return to UK [won't take ours in Spain]. We are back for our son's wedding next month so any NSC's at Peacehaven giving blood on 25 July I'll have my shirt on!
Glad to hear the progress reports Jim.

I have family in Holland and Denmark. Both are unable to give blood in their countries. Holland because the person is English, Denmark because of the drugs - though I think would be ok in UK. Good on you for giving blood when you're over

 

[Big Jim]

Just as a final incentive you get a cup of tea, crisps and biscuits as well when you give blood! I am one donation off my Silver medal.

The only time i get a treat of a biscuit or crisps is after giving blood. My argument being that I've lost weight (one unit of blood), so no real lose