# My 3 year old has cancer, and what I'm going to do about it



## Big Jim (20 Apr 2012)

Hi,
My 3 year old son William Lyne was first diagnosed with Acute Myeloid Leukaemia Type M7 in Feb 2011 (aged 2 at that time). He presented with a lot of pain early on and needed a constant morphine background to help through the days. “AML” is the Adult form of the disease (as opposed to the commonest form of “ALL” in children which thanks to research has a significantly better outlook).

He was treated as an inpatient at the Royal Marsden in Sutton, England until July 2011 when we were advised his chance of relapse was only 30%.

We were always advised that a relapse within a year would not be good as it would be hard to get William back into remission again, so were always on edge during this period.

Unfortunately William relapsed over Christmas (Christmas day was the first major and clear sign of a relapse). He has since had 3 courses of strong Chemotherapy again as an inpatient at the Royal Marsden in Sutton and is due a to start a bone marrow transplant (the only known cure following a relapse) today (15/4/12) again as an inpatient at the Marsden. His current chances of survival/ mortality are 50:50. The bone marrow transplant will take an average of 6 weeks as an inpatient, then many months of worry about virus/ infections which can (and have recently been seen to be) be fatal. Though clearly having a transplant in the summer is advantageous with respect to catching a Virus.

Though I wish I could cure this horrible disease, I know this is beyond me, though I can support the people who can make a difference with financial support.

With this my brother David and I + my friend/ colleague Paul Richardson have decided to cycle around the Island of Zealand in Denmark (around 260 miles) in September this year with the hope to raise money for Leukaemia and Lymphoma Research. We plan to do the ride over 5 days.


Our charity link is:

http://www.justgiving.com/williamlyne

Though you can equally donate by mobile phone text (SMS) i.e. Lyne55 £1/ £2/ £5/ £10 TO 70070 to donate. e.g. texting LYNE55 £2 - donates two pounds.

I hope you will support me in my quest to prevent other children getting this horrendous disease.







Regards.,

James Lyne


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## Brandane (20 Apr 2012)

As a non-parent, I can only try to imagine how distressing this illness must be for William, yourself and the rest of your family. Good luck with your fundraising, and best wishes to William for a full recovery. I was going to take the motorbike out for a wee blast today, but will go for a cycle instead. Petrol money saved added to your fund via above link.


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## Big Jim (20 Apr 2012)

Brandane said:


> As a non-parent, I can only try to imagine how distressing this illness must be for William, yourself and the rest of your family. Good luck with your fundraising, and best wishes to William for a full recovery. I was going to take the motorbike out for a wee blast today, but will go for a cycle instead. Petrol money saved added to your fund via above link.


Thanks BRandane. Good on you for doing this. Hope you miss the rain.


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## VamP (20 Apr 2012)

Good luck with the ride. 

Well done to you and to William for taking this on so courageously. I will keep you in my prayers. Donation made.


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## pubrunner (20 Apr 2012)

Big Jim said:


> Hi,
> 
> Our charity link is:
> 
> http://www.justgiving.com/williamlyne


 
Hi James,

Just tried the link, but I can't get it to work ? I've done a search on your son's name, but can't find anything ?

I hope that all goes well and that William has the best possible outcome.


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## Big Jim (20 Apr 2012)

pubrunner said:


> Hi James,
> 
> Just tried the link, but I can't get it to work ? I've done a search on your son's name, but can't find anything ?
> 
> I hope that all goes well and that William has the best possible outcome.


 
Really. ohh. It works when I click on it. I wonder why.

try cutting and pasting it in. http://www.justgiving.com/williamlyne

thanks for letting me know there's a problem though.


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## Big Jim (20 Apr 2012)

VamP said:


> Good luck with the ride.
> 
> Well done to you and to William for taking this on so courageously. I will keep you in my prayers. Donation made.


Thanks VamP for the donation and prayers. Hopefully all will be ok.


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## Panter (20 Apr 2012)

I can only offer my best wishes to you all, I just don't have the capacity to imagine what you're going through.
Anyway, made a donation.


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## Big Jim (20 Apr 2012)

Panter said:


> I can only offer my best wishes to you all, I just don't have the capacity to imagine what you're going through.
> Anyway, made a donation.


Thanks Panter. It's very much appreciated.


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## Big Jim (20 Apr 2012)

Can anyone give me a bit of advice with regards to bikes on Aircrafts?
I've asked around to see if any company can rent a bike box to us, and also asked the charity about this. Wiggle were really good and helpful, though could only supply soft bags.
But the current sugestions is to use some of the boxes that bikes are delivered in. I can get these for free from my local Wiggle store.

Has anybody done this with a bike before? Any advice?


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## Dave Davenport (20 Apr 2012)

How you need to pack your bike will depend on which airline you're using. If you're local to Wiggle you're not far from me, I've got two padded soft bags with lots of home made extra packing bits (fork spacers etc.) that you're welcome to borrow.

What made you decide on Denmark and not something in the UK?


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## fungus (20 Apr 2012)

I hope the ride goes well Big Jim, but most importantly my wishes are with William & a full recovery.


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## Big Jim (20 Apr 2012)

Dave Davenport said:


> How you need to pack your bike will depend on which airline you're using. If you're local to Wiggle you're not far from me, I've got two padded soft bags with lots of home made extra packing bits (fork spacers etc.) that you're welcome to borrow.
> 
> What made you decide on Denmark and not something in the UK?


 
Hi Dave.
Two reasons for Denmark. 1, my brother lives there in the middle of Zealand. 2, there are loads of cycle paths i.e avoiding the road as much as possible. A particularly cycle friendly country. I think also it's somewhere different if that makes sense.Though we're all keen cyclists, we're not super fit and used to this sort of thing. So it will be a big challenge. I mean we do 30 mile rides every now and then, but not the london to brighton, etc.

We're about 60 miles from Wiggle, thanks for the offer we'll weigh up our options. We'll most likely be using Easyjet who have replied to an email saying cardboard is ok. Just wondering if boxes with bubble wrap an all is better than bike bags.We still have a bit of time to work things out.

thanks again
James


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## Big Jim (20 Apr 2012)

fungus said:


> I hope the ride goes well Big Jim, but most importantly my wishes are with William & a full recovery.


 
Thanks Fungus. Very much appreciated + the donation


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## e-rider (20 Apr 2012)

This is a heartbreaking story. I really hope that your son gets through this, and hopefully you can make every day for him as joyful and fun as possible just in case the worst happens. All my best wishes to you and your son.


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## Big Jim (20 Apr 2012)

tundragumski said:


> This is a heartbreaking story. I really hope that your son gets through this, and hopefully you can make every day for him as joyful and fun as possible just in case the worst happens. All my best wishes to you and your son.


Thanks Tundragumski. Hopefully all will be ok. It's amazing the affects a bone marrow transplant can have in treating such cancers. I've heard from a lot of people on the forums, and some have gone through silmiar treatments themselves with good results. So, we're obviously hoping it'll be a cure for WIlliam.

But I just feel so useless when sitting next to him in the hospital, and hence why I so want to do my bit to help find a cure.

thanks for the best wishes.


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## 007fair (20 Apr 2012)

you have a small donation and a large dose of hope, thoughts, wishes, prayers etc from me.
My son is 12 and I cannot bring myself to even begin to think about what it would be like .. lordy, I'm crying ...


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## Big Jim (20 Apr 2012)

007fair said:


> you have a small donation and a large dose of hope, thoughts, wishes, prayers etc from me.
> My son is 12 and I cannot bring myself to even begin to think about what it would be like .. lordy, I'm crying ...


Thanks 007fair. To be honest this is why i want to do this ride to ensure other children, teenagers and adults alike don't go through this. I have seen some really horrible things, and really feel determined to do something to help find a cure. Researchers are getting closer all the time, and money is the way we can help.

I asked our Oncology Consultant at the hospital how can I make a difference, and support for this charity was basically the answer.

Good on you for making a donation and good luck to you and your 12 year old (+ family).


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## growingvegetables (20 Apr 2012)

All good wishes for your wee man. Aye, and for you and his mum too - an important time to be strong together.


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## Big Jim (20 Apr 2012)

growingvegetables said:


> All good wishes for your wee man. Aye, and for you and his mum too - an important time to be strong together.


 
Thanks growingvegetables. Wise words. I feel more determined than ever to beat this horrible disease. The big C is a battle for sure.


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## Cubist (20 Apr 2012)

My most heartfelt good wishes to you and William.


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## Big Jim (20 Apr 2012)

Cubist said:


> My most heartfelt good wishes to you and William.


Thanks Cubist.


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## pubrunner (20 Apr 2012)

Big Jim said:


> Really. ohh. It works when I click on it. I wonder why.
> 
> try cutting and pasting it in. http://www.justgiving.com/williamlyne
> 
> thanks for letting me know there's a problem though.


 
*I've sorted it now*; there was a problem with the particular computer that I was using.


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## pubrunner (20 Apr 2012)

Big Jim said:


> Thanks Tundragumski. Hopefully all will be ok. It's amazing the affects a bone marrow transplant can have in treating such cancers. I've heard from a lot of people on the forums, and some have gone through silmiar treatments themselves with good results. So, we're obviously hoping it'll be a cure for WIlliam.


 
Fingers crossed for a positive outcome !!!



Big Jim said:


> But I just feel so useless when sitting next to him in the hospital, and hence why *I so want to do my bit* to help find a cure.


 
. . . . . . . and you're doing a great job !!!

Here's hoping that you raise shedloads of money !!!


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## Big Jim (20 Apr 2012)

pubrunner said:


> Fingers crossed for a positive outcome !!!
> 
> 
> 
> ...


Thanks Pubrunner. Your support is so generous and deeply appreciated.

all the best, and thanks again.


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## smokeysmoo (20 Apr 2012)

Hey Big Jim, I'm sorry to hear about your lads troubles.

I've recently been closely involved with a colleague who's Niece was diagnosed with Neuroblastoma last year when she was just four. After exhausting all treatment options in the UK she needed specialist treatment in the USA and was fortunate to get funding via the Neuroblastoma Alliance, (although the family had to repay the money via fundraising events).

While her cancer was particularly aggressive she never gave up fighting, and possibly as important, she never stopped smiling. Anyway, she's now back from the US and her specialist is very positive for her future.

The point I'm trying to make is that there is always hope, and you have my very sincere best wishes for the same outcome for your little fella.

I don't know your religious beliefs, (and I'm not asking), but I will add your Son to my own prayers.

Take care and God bless


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## phil_hg_uk (20 Apr 2012)

Sorry to hear about your lad Big Jim I have dug out a load of sim cards and texted you all the credit.


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## Big Jim (20 Apr 2012)

smokeysmoo said:


> Hey Big Jim, I'm sorry to hear about your lads troubles.
> 
> I've recently been closely involved with a colleague who's Niece was diagnosed with Neuroblastoma last year when she was just four. After exhausting all treatment options in the UK she needed specialist treatment in the USA and was fortunate to get funding via the Neuroblastoma Alliance, (although the family had to repay the money via fundraising events).
> 
> ...


 
Neuroblastoma - That is a nasty disease and is one I have seen many times in children in the Marsden.

I could talk about a young boy who was told that there was nothing else they could do, but they tried a long shot trial drug and it worked.

You are definately right. Never give up, and never give up the fight.

thanks for the best wishes and prayers.


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## Brandane (20 Apr 2012)

Apart from fundraising, there is another useful way that anyone can get involved to help. There is an international register of people willing to be bone marrow donors, if they are found to be a match for someone in need of a bone marrow transplant. Further information available here. All it takes is a small blood sample to join the register.

I joined about 20 years ago but so far have not been called upon. A whole shift of guys and girls I worked with at the time did likewise, and as far as I know, at least one person has donated bone marrow to hopefully save someone elses life.


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## Big Jim (20 Apr 2012)

smokeysmoo said:


> Hey Big Jim, I'm sorry to hear about your lads troubles.
> 
> I've recently been closely involved with a colleague who's Niece was diagnosed with Neuroblastoma last year when she was just four. After exhausting all treatment options in the UK she needed specialist treatment in the USA and was fortunate to get funding via the Neuroblastoma Alliance, (although the family had to repay the money via fundraising events).
> 
> ...


Just did a donation for you. Best of luck.


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## Big Jim (20 Apr 2012)

phil_hg_uk said:


> Sorry to hear about your lad Big Jim I have dug out a load of sim cards and texted you all the credit.


Excellent. I am so very thankful. That is good of you.
Thanks again.


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## Big Jim (20 Apr 2012)

Brandane said:


> Apart from fundraising, there is another useful way that anyone can get involved to help. There is an international register of people willing to be bone marrow donors, if they are found to be a match for someone in need of a bone marrow transplant. Further information available here. All it takes is a small blood sample to join the register.
> 
> I joined about 20 years ago but so far have not been called upon. A whole shift of guys and girls I worked with at the time did likewise, and as far as I know, at least one person has donated bone marrow to hopefully save someone elses life.


 
Good call. You can do it when you give blood.
So book an appointment to give blood at www.blood.co.uk
Then when you turn up you just ask for and fill in a leaflet and then they take a little bit extra blood.

I believe Anthony Nolan hold the register, but presuambly the national blood service send their samples to them. I don't know to be honest. But it's very easy to do and the more people on it, means the better the chance of a match with someone. 

Anthony Nolan is a charity, and if it wasn't for them finding a match for William, then arranging for the donor to give their stem cells, we'd be stuffed. I did wonder if I should do the ride for them, but I still think that if we can find a cure for Leukaemia, then we'll never get to the stage of needing a bone marrow donor. So that was my logic.

Bone marrow donoring is definately giving someone a fighting chance of living. I mean with William, once he's relapsed it's the only known cure!

Thanks for pointing this out Brandane.


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## Big Jim (20 Apr 2012)

phil_hg_uk said:


> Sorry to hear about your lad Big Jim I have dug out a load of sim cards and texted you all the credit.


Wow, must've taken some time sorting through all them.

Thank you so much.


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## phil_hg_uk (20 Apr 2012)

Big Jim said:


> Wow, must've taken some time sorting through all them.


 
Yes I had to split up the amounts to keep within the limits. I like the vodaphone text a donation I have used it before, but they need to make it a little bit easier and relax those limits so you can just send any amount rather that only set amounts.



Big Jim said:


> Thank you so much.


 
You are very welcome


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## smokeysmoo (20 Apr 2012)

Forgot to add BJ, donation made via text with gift aid 

[EDIT] I've also shared your JustGiving page on my Facebook and Twitter pages too Jim


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## Mad Doug Biker (21 Apr 2012)

Sorry to hear that, I was diagnosed with CML (Chronic Myeloid) in 1998 age 16. I don't know much about AML other than it is the aggressive type that most young people get (between AML and CML), and if CML is not treated, it will eventually become AML with the different phases which I'm sure you will know all about.

CML is what old people (50+) get, so, at the age of 16, I was a bit of a novelty to the doctors - I genuinely was one in a million!

When I was diagnosed, only a Bone Marrow Transplant could properly treat it, but, there is something really rare about me, so no matches could be found (ironically both my brother and sister were matches for each other though).

In the Shehallion ward at Glasgow's Yorkhill Hospital (the Kids hospital), I had what is called an Autonomous Stem Cell Transplant, where I had stem cells taken from me, and were frozen. The leukaemic cells die off when frozen you see. At the same time, I was given chemo and put into strict isolation, because I had no immune system. When the time was right, they gave me back my stem cells, the idea being that the Leukaemia free cells would form a new set of building blocks for my immune system.

It didn't quite work, but, luckily for me, there was a new drug that had just started a trial through Glasgow University and, at the age of 18, I became the youngest person on it.
The drug, eventually called Glivec was a Kinase Inhibitor, and kept my leukaemia under control for nearly 10 years at a certain blood level, but I have now started on another drug from the same family, which is 300 times more powerful and has been responsible for my BCR - ABL blood count going down to 0.012 at the latest check. Well below what they want for full treatment.

I know that might sound like I am rubbing your nose in it, but believe me, the doctors will do everything in their power to help your son, mark my words, they are a passionate lot these doctors, especially when they work with kids, my Consultant at Yorkhill was one of the most inspirational people I have ever met, and now I'm being treated by a Professor!

After seeing the kids in the Sheihallion Ward, I knew I wanted to give something back and work in the field of Haemotology myself, even if it is just lab work. After a few false starts, I'm getting there eventually (I've done other things entirely in the interim you see).

Actually, there was one kid in particular who made me feel this:

There was a 5 year old girl who was in the ward. Unfortunately, she had such a rare mutation of something that the doctors couldn't do anything for her, or more, they didn't quite know what to do. She had come from a Perthshire farming family, and was the youngest of the family by at least 10 years. Her brothers, all huge hairy arsed farmer types could only look on, powerless to do anything, they would have done ANYTHING for their baby sister, fought the disease themselves if humanly possible, but, with all that strength, they couldn't do a thing. It was truly heartbreaking to watch.

After that, I knew I had to do something. I can't remember the name of the girl, but the image of their brothers all sat round her bedside will be imprinted on my memory forever!
It didn't affect me at the time because I was potentially in the same situation and the fact I was in isolation for most of it, but now when I think about what I did see, it just gets me!

I hope sincerely that everything goes well for your son, I know the Royal Marsden has a good name, and remember, you aren't alone!!


Edit: I have just donated.


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## Big Jim (21 Apr 2012)

smokeysmoo said:


> Forgot to add BJ, donation made via text with gift aid
> 
> [EDIT] I've also shared your JustGiving page on my Facebook and Twitter pages too Jim


 
Thanks smokeysmoo and for also sharing the link. Very much appreciated.


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## Big Jim (21 Apr 2012)

Mad Doug Biker said:


> Sorry to hear that, I was diagnosed with CML (Chronic Myeloid) in 1998 age 16. I don't know much about AML other than it is the aggressive type that most young people get (between AML and CML), and if CML is not treated, it will eventually become AML with the different phases which I'm sure you will know all about.
> 
> CML is what old people (50+) get, so, at the age of 16, I was a bit of a novelty to the doctors - I genuinely was one in a million!
> 
> ...


 
Wow. I've actually leant a lot from your email and appreciate your time to share that with me (and us). I certainly didn't know that the cells would die in the freezer, though have heard about this process (of storing then reusing own stem cells) happening.

With regards to CML, I'm sorry that at the age of 16 you had to deal with this and not do what a 16 year old should be doing. This is one thing that really gets to me when I see teenagers having to deal with Cancer. My Grandad had CML in the early 1980's and I still remember it very well. I think a famous footballer (Geoff Thomas I think) also suffered with CML, but in his thirities I think. AML as you say is Acute which in effect means it's very quick as opposed to chronic which comes on slower. But both left untreated would have the same outcome and are nasty.

William is also having an Autonomous Stem Cell Transplant, but thankfully a 10:10 donor was found by the Anthony Nolan Trust. I think the point about not being able to find a match for you, further shows how important it is for people to join the registry. In Germany every blood donor is immediately opted in to being a donor (as I understand) and an awful lot of donor for stem cell transplants are immedietly found in Germany. Certainly 2 out of the 3 that were found for William were German. Also I know another little boy and his match was a german soldier. There were plenty more examples.

However, there is also another choice now, where they can use stem cells from new born babies cords and they have a large bank. There is less rejection with this, as the stem cells are young - hence a worse match can be used. Also the cords are stored without the need to locate a donor and have them actually give the stem cells, etc. But the immature cord stem cells are less likely to work than a matched donor. But even so, the chances of finding a match in some form has certainly improved with advertising and word of mouth.

What you say about wanting to work in research is exactly how I feel. But I'm currently 39 and have spent many years in my current occupation, so don't think it'd ever be possible, though we'll see where we are later in the year. But I know exactly how you feel. It's like you really want to find the cure yourself. I think it's that frustration that has led me to do this ride. i.e. I don't think i'll ever be able to get into research but I can help fund those people who can. Good on you for doing this. It must be one of the most rewarding jobs, and I bet you felt relief being able to do something.

I also know exactly how you feel about seeing other sick children and how it stays with you. I remember one little girl had a disease where her bone marrow was poisioning her. She was having continous blood transfusions and the consultants said they'd only seen the condition twice before and both cases died. The only time we saw the girl smile before she died was when Fearne Cotton came into the Marsden for a visit. The power of the celeb put a smile on a girls face who was going through so much hell. Good on Fearne Cotton (who incidentally also posed with William).

thanks for the donation and the words. I wish you all the best for the future.


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## seashaker (21 Apr 2012)

Thinking of you and your family. Donated what I can. Great cause.


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## Big Jim (21 Apr 2012)

seashaker said:


> Thinking of you and your family. Donated what I can. Great cause.


Thanks seashaker. I appreciate your support.


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## Mad Doug Biker (22 Apr 2012)

Big Jim said:


> Wow. I've actually leant a lot from your email and appreciate your time to share that with me (and us). I certainly didn't know that the cells would die in the freezer, though have heard about this process (of storing then reusing own stem cells) happening.


 
Well, that's what we were told at the time and I have no reason to doubt it. Also it had a preservative added to it that smelt of rotten tomatoes (Apparently. Tomatoes are one of the few things I don't like, so I have never bothered to actually find out!)



> With regards to CML, I'm sorry that at the age of 16 you had to deal with this and not do what a 16 year old should be doing. This is one thing that really gets to me when I see teenagers having to deal with Cancer.


 
Indeed, although an improvement from my day is that there are now wards for Teenagers and young adults, courtesy of TCT (Teenage Cancer Trust, for whom I have done voluntary work and helped raise money for, as well as other charites such as Clic Sargent and Anthony Nolon too).

I had to slum it with little kiddies and all the joys that entailed, such as the food (Turkey Dinosaurs and beans anyone?) which always seemed to manage to smell quite nauseating at the best of times, even more so when mixed in with the delightful fragrance of some kid's nappy being changed or whatever.
The general feeling of 'I'm not meant to be here!' (having a 2/3 and 4 year old as my 'room mates' for example, although the parents were always good) and the lack of age relevant entertainment other than the TV. A few late night films on the Channel 4 and 5 of the time kept me (and no doubt some of the parents) going though, namely when I got my own private room when I was in strict isolation if you catch my drift 

Also, the bedsheets (steady now!) that were never quite long enough - I had to tuck a second blanket in near the end of the bed and extend it round the bottom of the mattress so that my feet didn't get cold! (a side effect of Chemo I, and others have had is that you feel the cold quite easily, so it didn't take much to make me freezing! That side effect took a good 5 years to pass also! As a result, even now I don't mind heat)

That said, I got to know a lot of the parents quite well, and for some reason, talking of food, a cook at the Queen Mother's, the Maternity Hospital next door got to hear of me and I ended up having almost anything I liked cooked for me, which was great! I never did get to meet 'my personal chef' to say thankyou, which I regret now.



> My Grandad had CML in the early 1980's and I still remember it very well.


 
What happened if you don't mind me asking?



> I think a famous footballer (Geoff Thomas I think) also suffered with CML, but in his thirities I think.


 
Yes I remember hearing of a sportsman who had had it, although I'd need to look it up



> William is also having an Autonomous Stem Cell Transplant, but thankfully a 10:10 donor was found by the Anthony Nolan Trust.


 
Woohoo! always good to hear!



> I think the point about not being able to find a match for you, further shows how important it is for people to join the registry.


 
Well, apparently they had found a match for me, in Germany funnily enough, but I was starting the trial of Glivec at the time, so they kept it as a possible option for the future



> Also I know another little boy and his match was a german soldier.


 
A modern day German Soldier I presume, not a (very old) member of the 3rd Reich? Yes, I know there is an age limit on it.



> However, there is also another choice now, where they can use stem cells from new born babies cords and they have a large bank. There is less rejection with this, as the stem cells are young - hence a worse match can be used. Also the cords are stored without the need to locate a donor and have them actually give the stem cells, etc. But the immature cord stem cells are less likely to work than a matched donor. But even so, the chances of finding a match in some form has certainly improved with advertising and word of mouth.


 
It has certainly moved on leaps and bounds since the late '90s!



> so don't think it'd ever be possible, though we'll see where we are later in the year.


 
It is a big step to take obviously, but never say never!



> It's like you really want to find the cure yourself.


 
I couldn't have put it better myself!
That girl I mentioned before, the doctors were at a loss what to realistically do for her, and you just wonder what you could have done if you had been in the lab.The reality is of course, that you probably couldn't have done anything better, but still, you want to pretend that you could have had the answer....



> i.e. I don't think i'll ever be able to get into research but I can help fund those people who can. Good on you for doing this. It must be one of the most rewarding jobs, and I bet you felt relief being able to do something.


 
I probably wasn't very clear in my original post (I did have some blood in my alcohol stream at the time), I haven't done anything yet, I'm still at College getting my qualifications, but hopefully I will be able to do something one day.



> I also know exactly how you feel about seeing other sick children and how it stays with you. I remember one little girl had a disease where her bone marrow was poisioning her. She was having continous blood transfusions and the consultants said they'd only seen the condition twice before and both cases died.


 
I suppose there will be things they will not be able to cure unless some really major breakthrough emerges.

Not related, but there was another young girl (2 or 3) from either Algeria or Morocco (I can't remember which now) who had effectively been posted (with her grown up sister) to get some treatment.
She was often left by herself as the sister had to do other things, so the Nurses took her under their wing, adopted her as it were, and would take her and her dolls for walks round the hospital grounds, buy things for her (including a certain pair of sunglasses) and so on. All up and beyond the call of duty by the nurses, but, what else could they have done? She had practically been abandoned and must have been one confused and lonely little girl!

By the end, she was a firm ward favourite, had become quite a character, was often being seen simply wandering about the place always wearing her favourite sunglasses (the cheap plastic, star shaped type) and had a strong Glasgow accent, complete with all the different phrases picked up from the nurses (quite what they must have thought of her when she went back home I don't know! )

Her treatment ended up being a bit difficult as the work of the nurses backfired slightly. She had learned that she could just go for a walk whenever she wanted, so when she was supposed to be in isolation, she made a few (innocent) bids for freedom instead (and who could blame her?) 

Eventually she was deemed well enough to go home and continue her treatment, so, off she headed, sunglasses and all, leaving, by this time an astronomical trail of well wishers as she went.

The next thing we heard, she hadn't had the medical treatment she needed and had died. The Nurses and Doctors must have been absolutely devastated!  I know I would have been!

To be fair, she might have gone walkabout and gotten some infection, I don't know what the story was, but still, *what, a waste!!*



> The only time we saw the girl smile before she died was when Fearne Cotton came into the Marsden for a visit. The power of the celeb put a smile on a girls face who was going through so much hell. Good on Fearne Cotton (who incidentally also posed with William).


 
What a nice memory to have.
All we got were some people from the Navy (HMS Glasgow), although players from Rangers and Celtic apparently visit regularly.

A strangely amusing story though was when a 3 year old I was sharing a room with won a giant clown soft toy in some competition.
Poor boy! He was petrified of it and it had to be hastlily given elsewhere, but, to be fair, it WAS bigger than he was!  Yet someone else who will now be scared of clowns methinks....



> thanks for the donation and the words. I wish you all the best for the future.


 
And to you, William and the rest of your family.


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## Mad Doug Biker (22 Apr 2012)

Actually, now coming to think of it, the hospital 'play specialists' bought me an Airfix model of a Mosquito.

I seem to remember spilling the turps, so the place stank of it for ages


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## Big Jim (22 Apr 2012)

Mad Doug Biker said:


> Well, that's what we were told at the time and I have no reason to doubt it. Also it had a preservative added to it that smelt of rotten tomatoes (Apparently. Tomatoes are one of the few things I don't like, so I have never bothered to actually find out!)
> 
> 
> 
> ...


It's strange how various accounts from other hospitals have the same sort of stories as we do.It's almost as though we could be in the same hospital.

William was in a mixed ward last year and I know exactly what you mean about mixing ages. Thankfully with the charities you mention and also in our case the Royal Marsden Cancer CHarity, the two wards are now split between upstairs (teenagers) and downstairs (infants). Though I think the teenagers are now treated like adults there which I'm not sure is so good to be honest.

My grandad passed away with his CML. It was a slow process which didn't help. I was very young at the time and all I remember is his last days. But he was very old, I mean well into his eighties and it was early 1980's when I don't think treatment was so advanced. So it's another case of blood cancer in the family that has affected us.

The German soldiers are all current youngsters, but the problem is that they get called into duty so can't donate. I know this is really shallow, but I think it's a bit ironic after all that happened in the first half of last century. But then I suppose a lot of people in the UK are Anglo Saxon's so it's to be expected.

Good luck with passing the exams. I hope all goes well and you can help find a cure. As I say I would love to do the same, but I suspect it's too late for me. But you can never say never I suppose.

best of luck


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## Big Jim (22 Apr 2012)

Mad Doug Biker said:


> Actually, now coming to think of it, the hospital 'play specialists' bought me an Airfix model of a Mosquito.
> 
> I seem to remember spilling the turps, so the place stank of it for ages


We had an issue with moon sand earlier this year. went everywhere in the room!


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## pubrunner (23 Apr 2012)

*** Bump ***


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## Mrbez (24 Apr 2012)

A beautiful boy you have. 

My sister was diagnosed with Leukemia when she was 11, 3 days before her 12th birthday. 

She actually passed her 10 years of treatment 18 months ago and is going strong. 

I have made a donation, and I wish you all the best to William and your family in these times. 

Regards, Craig.


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## Nigeyy (24 Apr 2012)

Yes, very true -a lot stress involved with something like this. My wife and I have a son with a major health issues, don't forget to stay strong together as corny as that sounds.

Best wishes.



growingvegetables said:


> All good wishes for your wee man. Aye, and for you and his mum too - an important time to be strong together.


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## Big Jim (24 Apr 2012)

Mrbez said:


> A beautiful boy you have.
> 
> My sister was diagnosed with Leukemia when she was 11, 3 days before her 12th birthday.
> 
> ...


Thanks Craig. 10 years is really good and i'm sure a big relief to all the family. Do you know if she had ALL or AML? WIth ALL the treatment is over 3 years I think for a girl (I may have got tha the wrong way round and be 2 years for a girl, three for a boy). ALL is more common in children.

AML is treated in 6 month and is more common in adults. 

William has AML.

thanks for the donation and best wishes.


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## Big Jim (24 Apr 2012)

Nigeyy said:


> Yes, very true -a lot stress involved with something like this. My wife and I have a son with a major health issues, don't forget to stay strong together as corny as that sounds.
> 
> Best wishes.


Thanks Nigeyy. I'm sorry to hear about your son. It's a real drain on the whole family when your child is ill - just seems so unfair and wrong. We just have to get through it the best we can I suppose.

Thanks for the donation and best wishes


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## Mrbez (24 Apr 2012)

Hi Jim, I think it was ALL, as I'm sure the initial treatment lasted for 2 years. 

How is William holding up?


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## Big Jim (24 Apr 2012)

Mrbez said:


> Hi Jim, I think it was ALL, as I'm sure the initial treatment lasted for 2 years.
> 
> How is William holding up?


I don't understand why they are treated so differently as they're both Leukaemias and why one has so much better an outlook. Maybe this is a question I should ask the Dr's at the Marsden when I see them.
If you look at the blood production tree, ALL relates to the disease being in the Lymphoid side, AML relates to the disease being in the Myeloid side. http://en.wikipedia.org/wiki/White_blood_cell

For some reason ALL is more common in children, AML is more common in Adults.

William is ok at the moment. He was due to start the BMT last week, but somehow contacted FLU. I've no idea how, as he was in isolation in the house. A few trips to the local could have been the reason, or his older sister. So the BMT has been delayed. He's also got/ had Shingles and a super bug called CDiff. But I'm actually sure he's quite a tough cookie as he seems quite well at the moment.
Certainly considering he couldn't straighten his legs for 6 weeks even with a Morphine background and Morphine bonus's, from New Year until I think Feb time, it's quite incredible how he can now stand and walk, be it in a disabled kind of way. Children can get ill quickly, but can also recover amazingly well compared to adults. I suppose if you're going to get Cancer in life, to an extent you have a better chance of getting through it as a child. Though it's cruel for Children and I think particularly teenagers.


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## Big Jim (24 Apr 2012)

Ohe thing I heard that is quite an eye opener is that 1 in 100 children are born with the ability to get Leukaemia - i.e. it's in them when they're born. Out of them, only 1 in 100 go on to develop it. So it's sitting as a potential time bomb for 1 in 100 children. I think this relates to ALL.


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## Randochap (25 Apr 2012)

As a 2-time cancer survivor, saved first by high-dose radiation, then surgery for the recurrence 4-years later, I have a bit of insight into what it's like to battle the crab. What I can't fathom is how these little guys handle the agonies involved. They really are heroic.
It's possible that my cancer will return, though I'm now 5-years free. I've had a good run, but it's so heartbreaking to see kids struck by the disease.
The idea that I'd get back on my bike helped keep me focussed on survival. I send your little guy and your family all my best. Keep believing.


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## Big Jim (25 Apr 2012)

Randochap said:


> As a 2-time cancer survivor, saved first by high-dose radiation, then surgery for the recurrence 4-years later, I have a bit of insight into what it's like to battle the crab. What I can't fathom is how these little guys handle the agonies involved. They really are heroic.
> It's possible that my cancer will return, though I'm now 5-years free. I've had a good run, but it's so heartbreaking to see kids struck by the disease.
> The idea that I'd get back on my bike helped keep me focussed on survival. I send your little guy and your family all my best. Keep believing.


I'm sorry to hear that Randochap. One thing that was very harrowing was seeing WIlliam in so much pain,and he just didn't understand why. Certainly it took him many months to be able to straighten his legs again this year, and needed a morphine background and plenty of bonus's to change his nappy.

It is truely a horrible thing, and I just hope that the BMT will cure WIlliam - though he'll be infertile.

Thanks for sharing your story, and it's good that the desire to get back on the bike helped focus you. Funnily enough I bought WIlliam a Giant trike from Wiggle for last Xmas, but then he was struck down with the relapse and couldn't use it. So I suppose also the desire to see him on it also kept us strong. Thankfully William will avoid Radiotheraphy as he doesn't have CNS disease (which can happen with a relapse I've heard).

Best of luck again


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## Big Jim (2 May 2012)

Currently sitting at 296%


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## pubrunner (3 May 2012)

Big Jim said:


> Currently sitting at 296%


 
That's really good news - hope you get shed loads more !


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## Big Jim (3 May 2012)

pubrunner said:


> That's really good news - hope you get shed loads more !


 
Hope so. So close to £3K now.


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## Fubar (3 May 2012)

Hi Jim, just donated (you're over £3k now!) - all the best to William and your family, and good luck on your cycle challenge. Kind regards, Mark


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## Big Jim (3 May 2012)

Fubar said:


> Hi Jim, just donated (you're over £3k now!) - all the best to William and your family, and good luck on your cycle challenge. Kind regards, Mark


 
Thanks Mark. I was over the moon when I saw we are now over 3K before Williams BMT. That's a decent total to make a difference I think.

Thanks for the best wishes and donation. It's very much appreciated.


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## Stephen13 (3 May 2012)

Guys all the best with William, stay strong, not easy but keep it together, I lost my first wife to cancer back in 2006 she was only 30 and left me and our 3 and 5 year old. It takes it out of you but keep going.


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## Big Jim (3 May 2012)

Stephen13 said:


> Guys all the best with William, stay strong, not easy but keep it together, I lost my first wife to cancer back in 2006 she was only 30 and left me and our 3 and 5 year old. It takes it out of you but keep going.


 
So sorry to hear that Stephen. I feel something horrible deep inside when I hear of people (and particularly a parent of youngsters) dying so young. I think what is so evident is that it can hit anyone and at anytime often without warning, and you can't quite believe it's happening to you - i.e. you think it usually happens to other people.

I know it's not the same, but I lived with my Gran when I was between 16 and 23 (so quite a time). and was very close to her. She suddenly got Lymphoma and was dead within a month or two. I was in my last year of Uni and had to leave the house, etc. It knocked the stuffing out of me for a few years.

Best of luck for the future Stephen.


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## Big Jim (5 May 2012)

Just heard that the company I work for match the donations for the Leukaemia & Lymphoma Research (on our page http://www.justgiving.com/williamlyne ) with donations for their current charity of choice "action for children". Which is good news.


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## Philtofit (6 May 2012)

Good luck and best wishes for a positive outcome.

Phil.


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## Big Jim (6 May 2012)

Thanks Phil. Just got to hope all goes to plan


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## Paul Stumpy FSR (10 May 2012)

Hi Jim,
just read this on the forum whilst browsing. I hope William is on the mend soon.
all the best of the ride, sure it'll be fine 
Paul


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## Big Jim (11 May 2012)

Thanks Paul Stumpy FSR


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## Big Jim (14 May 2012)

William's currently on day 7 of his conditioning Chemo. All seems to be going well so far. ON thursday his new cells will go in and hopefully he will be cured. Fingers crossed.


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## pubrunner (14 May 2012)

Big Jim said:


> William's currently on day 7 of his conditioning Chemo. All seems to be going well so far. ON thursday his new cells will go in and hopefully he will be cured. *Fingers crossed*.


 
Hope all goes well for William - it'd be most uplifting to hear of a positive outcome . . . . . . . how long will it be before you know if his new cells 'work' ?


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## Barbelier (14 May 2012)

Hi Jim
Thinking of William and you all, and very much hoping for a positive result.
Just made a donation in the hope that it will go some small way towards helping to eradicating this horrible disease.


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## Big Jim (14 May 2012)

pubrunner said:


> Hope all goes well for William - it'd be most uplifting to hear of a positive outcome . . . . . . . how long will it be before you know if his new cells 'work' ?


 
I've heard that the conditioning (i.e. getting the body ready for the transplant and killing off his stem cells) is usually ok. It's the day after the cells go in that they usually go down hill. So Friday or Saturday this week is when he'll get bad.

It takes about 2 weeks of him being a real risk of infection before the cells engraft and start to produce new blood cells (red, white and platelets). Then we have to hope for the following months that he doesn't get any nasty virus's. Have heard that 4 children who died in Jan/ feb this year 3 months post transplant. So, it's going to be nervy for some time. I think usually the cells do engraft so that's not the worry. I think from what they told us there's a 15% chance that he'll die due to the BMT process or a virus, which is actually not too bad a statistic.

With regards to the cancer being killed off and gone, we won;t know for 5 years. Though if he hasn't relapsed within 2 years that's usually a good sign. He has a 30% chance that he will relapse again. I think the way to think of it, is if I took some of WIlliam's cancer cells and injected them into me, my immune system would see them as foreign and kill them. i.e. I can't catch cancer from him. The problem is William's current bone marrow doesn't see the cancer as a foreign body and hence his immune system has allowed the cells to co-exist. I think this is the current field of research, trying to turn the immune system back on so that it see's the cancer as foreign and kills it off. So the idea is to kill off as many cells as possible during the conditioning, then the new stem cells from a donor will engraft in William's body and then see any resident Cancer cells as foreign and kill them. So in affect the new immune system is the fighting force that will cure him. So, it's just wait and see if works. I think there's a very good chance it will (touch wood).

So it's just wait and hope.

I'm actually uploading photos on twitter if anyone fancies seeing the pictures of the chemo + hopefully the new stem cells on Thursday if I manage to get a photo. @jameslyne1


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## Big Jim (14 May 2012)

Barbelier said:


> Hi Jim
> Thinking of William and you all, and very much hoping for a positive result.
> Just made a donation in the hope that it will go some small way towards helping to eradicating this horrible disease.


 Thank very much Barbelier for the donation and wishes


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## Big Jim (15 May 2012)

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. can't wait.


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## RhythMick (15 May 2012)

Donated. All the best for William and family.


Sent from my iPad using Tapatalk HD


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## Big Jim (16 May 2012)

RhythMick said:


> Donated. All the best for William and family.
> 
> 
> Sent from my iPad using Tapatalk HD


thanks very much RhythMick. Very much appreciated, both the donation and the best wishes.


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## Big Jim (17 May 2012)

Today's the day of the cells. Going to happen in 2 hits. one at 10.00 am, then one in the afternoon.

will be an interesting thing to see.


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## smokeysmoo (17 May 2012)

Hope everything goes well Big Jim


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## rusky (17 May 2012)

Big hugs all round from all of us.


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## Panter (17 May 2012)

As above, very best wishes to you all


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## User169 (17 May 2012)

All the best, William and family


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## Big Jim (17 May 2012)

All good thus far. I hope the below image works. It's the bone marrow (stem cells going in)


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## RhythMick (18 May 2012)

Big Jim said:


> All good thus far. I hope the below image works. It's the bone marrow (stem cells going in)



Aw bless. Hope he keeps smiling - I'm convinced that staying happy helps the body heal.


Sent from my iPad using Tapatalk HD


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## Big Jim (18 May 2012)

RhythMick said:


> Aw bless. Hope he keeps smiling - I'm convinced that staying happy helps the body heal.
> 
> 
> Sent from my iPad using Tapatalk HD


For sure.
Whilst he was having the new cells, there's something with them that made him feel sick. He was happy and smiling again within 5 mins of this picture.

Only problem is over night he got really sick and they were thinking his appendix was dicky. So emergency scans, Dr's running around, etc. But actually nothing showed up, and he's a little bit better after having some strong Anti-Biotics.

Have to say, the Dr's at the Royal Marsden are superb and when you need them, they're with you very quickly. So, it's just going to be up and down for a while like this. But hopefully (touch wood) he'll get through it.

The picture is amazing though. Because the Anthony Nolan Trust arranged for its contents to arrive, etc. Very few people in the world would have been a match for William, yet they had that person on their database and he did the donation,etc. You know what I'm trying to say. It's all very impressive and for a charity I am very grateful to them. It also shows that A bone marrow donation is literally like a blood donation, just their different cells, and it takes a little longer, etc. So signing up is a great thing to do. http://www.blood.co.uk/


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## growingvegetables (18 May 2012)

All very best for the wee lad, and mum and dad.


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## Big Jim (18 May 2012)

growingvegetables said:


> All very best for the wee lad, and mum and dad.


thanks


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## RhythMick (18 May 2012)

Unfortunately they won't accept my blood because I'm officially an asthmatic. I rarely need an inhaler and even less so since I took up cycling but hey. I wonder if they would take me as a bone marrow donor though? I'll find out.


Sent from my iPad using Tapatalk HD


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## Big Jim (18 May 2012)

RhythMick said:


> Unfortunately they won't accept my blood because I'm officially an asthmatic. I rarely need an inhaler and even less so since I took up cycling but hey. I wonder if they would take me as a bone marrow donor though? I'll find out.
> 
> Sent from my iPad using Tapatalk HD


 
Sorry to hear that. A lot of people that want to (like my wife) but can't give blood, which means those of us that can have more of a responsibility imo. It's one of those things that lots of people think about, but never actually go to do it. To be honest, I think they (blood.co.uk) could make it easier by having more walk in centres, but there we go.

Worth giving Anthony Nolan a message to see what they think.

With the bone marrow database, it's all about the numbers of people on it. If so many people are on it, then you're bound to find a match between people. Also cord blood from newborns is a last call for people who can't find an adult match. So create a life, and save a life at the same time.

When I saw those stem cells going in, it's hard to believe the work that's gone into getting them there. Also the fact that very few people could ever be a match for my son.

It's incredible to think a complete stranger could have given my son something that chemical medicines can't. What an amazing thing to do.


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## RhythMick (18 May 2012)

Damn, they won't put me on the bone marrow register because I'm over 40. 

All I can do now it seems is donate and spread the word to under 40s. 


Sent from my iPad using Tapatalk HD


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## Big Jim (19 May 2012)

RhythMick said:


> Damn, they won't put me on the bone marrow register because I'm over 40.
> 
> All I can do now it seems is donate and spread the word to under 40s.
> 
> ...


 
According to this, the cut off is the day before your 50th birthday if you're a blood donor (I know you're not, but it seems if you're a blood donor you have another 10 years):

http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#whatis

I know that people older than 40 can do donations, as my little boy had a donation from someone who's between 40 and 50.

Have to be honest that I've never considered going to the ANT, as I give blood it was very easy to get it all done at that time during the same donation.
Good of you looking into it though.


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## Big Jim (20 May 2012)

On day 3 post transplant and all seems well still. He's got a bit of a cough, runny nose and sneezes, but doesn't look overly unwell and doesn't have a temperature.


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## Big Jim (21 May 2012)

He's currently on day 4 and doing very well. A low grade temperature, with cough, etc. But still considerably better than we'd have hoped at this stage


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## Panter (22 May 2012)

That's quite a moving image, no little boy should have to go through anything like that.
Delighted all is going well so far, my thoughts are with you.

I have a real phobia of blood and needles, I'm getting better with it though and will definitely try and attend to a session to start blood doning.


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## Big Jim (22 May 2012)

Panter said:


> That's quite a moving image, no little boy should have to go through anything like that.
> Delighted all is going well so far, my thoughts are with you.
> 
> I have a real phobia of blood and needles, I'm getting better with it though and will definitely try and attend to a session to start blood doning.


I agree, it seems wrong that they go through it.

My sister won't give blood because of the needles. To be honest, I just don't look. I also think that the thought is worse than the doing. It really is a very easy thing to do. Good luck if you give it a try.

But, today is day 5 and all seems ok-ish still. He had a 38.7 temperature last night, but was fine throughout the night so seems to be coping ok. Just got to hope his counts pick up soon.


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## Big Jim (24 May 2012)

Day 7 and he's still ok. No fevers. though sneezing, coughing and being sick, but this should subside when his counts recover. 

He did start to grow back his hair during his 2nd and 3rd chemos as those particular drugs don't affect hair loss. Unfortunately his conditioning drugs this time do affect hair. So it's starting to fall out again, but it will grow back again. 

So far, so good.






Hopefully in 3 days his counts may start to recover.


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## Big Jim (26 May 2012)

Day 9 and still ok-ish. Consultants and Dr's are happy with the way things are going. Though he had two high fevers yesterday, Paracetamol did the trick in getting them down along with Morphine to make him feel better. Hopefully his blood counts will recover in a few days and he will improve over time.


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## Big Jim (26 May 2012)

[QUOTE 1864851, member: 45"]That boy is going to need some spoiling when he starts to recover. Has he got a bike?[/quote]
Bought him a Giant Trike for Xmas. Then on Xmas day he lost the ability to walk, i.e. first major sign of relapse. So there we were stuck with this new trike and a son exceptionally unwell - was one of the most upsetting things about it. Thankfully after his first Chemo we got him home for a few days and one of the first things we did was get him on the trike.

He's lost the ability to walk twice, and I think during this transplant he has again also (having lost a kg and been pretty much bed bound for 3 weeks so far). Hopefully will be ok in a while again.

today is having regular fevers. but calpol are getting them down at present.

maybe a trip to intensive care soon.


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## Big Jim (27 May 2012)

Day 10 and his counts have just started to recover. He's still having regular fevers, but they are slightly longer apart from what they were yesterday. So it's all a good start and nice to see.


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## pubrunner (28 May 2012)

Cheers for all the updates, Big Jim !

I'm certain that quite a few of us have our fingers crossed and are following your updates.


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## Big Jim (28 May 2012)

pubrunner said:


> Cheers for all the updates, Big Jim !
> 
> I'm certain that quite a few of us have our fingers crossed and are following your updates.


 
Thanks 

He's improved slightly from yesterday. His WBC is now up to 0.2, but I think normal range for his age is about 8, 9 or 10. So that sort of puts a perspective on things. Certainly he has no Neutrophils at the moment, and anything under 1 is classed as being Neutrophenic and at risk of infection. So I think the point is, though his body is showing signs of recovery, he isn't out of immediate danger of infection yet. His Fevers have started to get further apart in time. So, a few days ago he was spiking before his next paracetomal was due, where as now he's spiking every 7 or 8 hours. I think the longer he goes between spikes proves that he's improving. i.e. sooner or later he won't spike at all.

He had a CT and ultrasound scan today to check for a fungal infection, but that all came up ok.

So really it's just a case of waiting and hoping still. Though even once his counts are recovered, he still has many months of being super careful and avoiding virus's. Then the 30% possibility that the Cancer returns.

A truely horrible disease. I was looking at jobs at the institute of Cancer Research earlier as this whole situation just drives you mad and makes you want to physically help find a cure. oh well.

Thanks for the best wishes and also thanks again for the donations. Currently over £5K.


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## skudupnorth (28 May 2012)

As a father of four daughters i feel for you and cannot imagine what you and your family are going through,you want to protect your kids from everything, even this evil disease.Good luck with everything


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## Big Jim (29 May 2012)

skudupnorth said:


> As a father of four daughters i feel for you and cannot imagine what you and your family are going through,you want to protect your kids from everything, even this evil disease.Good luck with everything


I think you touch on an important point, that you want to protect your kids from everything. But all you can do is literally look after them in the hospital and have to leave the treatment to the Dr's and Nurses. I think this is basically what motivates me, the only thing I can do is to try and help the people researching to find a cure by financial support. Hopefully after this treatment William will be cured, but certainly after one and a haf years in hospital it's taken it's toll on all of us and I just hope in the future they can find a simple tablet to cure instead of the current treatments. But the Royal Marsden are doing a superb job of treating him.


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## skudupnorth (29 May 2012)

Big Jim said:


> I think you touch on an important point, that you want to protect your kids from everything. But all you can do is literally look after them in the hospital and have to leave the treatment to the Dr's and Nurses. I think this is basically what motivates me, the only thing I can do is to try and help the people researching to find a cure by financial support. Hopefully after this treatment William will be cured, but certainly after one and a haf years in hospital it's taken it's toll on all of us and I just hope in the future they can find a simple tablet to cure instead of the current treatments. But the Royal Marsden are doing a superb job of treating him.


Thats the other side of cancer people forget is the toll on the rest of the family,it all looks hopefull and then you can all lead normal lives and enjoy everything.Good luck again


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## Big Jim (30 May 2012)

skudupnorth said:


> Thats the other side of cancer people forget is the toll on the rest of the family,it all looks hopefull and then you can all lead normal lives and enjoy everything.Good luck again


 
It's ripped our life apart for about a year and a half. When you have a 2 year old (last year) 3 year old this year, you can hardly leave in hospital on their own. One of the parents need to be with him 24/7, then there's the other children in the family need looking after also. My wife has had to give up her job, I started a new job part time (couldn't go full time with William's condition), but am struggling to keep the hours up even though they're allowing me to work for home (hospital).

I know there are plenty of other disease's and conditions other than cancer, but William's condition has certainly turned our lives upside down. Also a reminder about how quickly, at the toss of a coin, your life can be thrown into complete disarray. A message here is to enjoy and love your kids (and family) each and every day as if it's the last day you have with them (not that you should assume they'll get sick, but never not do something that's important and leave for another day).

Currently day 13, and still waiting for his counts to come up fully. The Fevers seem to be much improved.


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## Big Jim (30 May 2012)

His counts have risen a little bit,




But his eyes look really sore and his cough seems to be getting worse. But no fevers for 27 hours now.

Funny little red spots are appearing also, which the Dr's don't think are part of the GvH disease. A professor is coming up to take a look at some point hopefully.


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## Big Jim (30 May 2012)

Big Jim said:


> His counts have risen a little bit,
> 
> 
> 
> ...


 
Registrar came up instead, was very disapointed  - never met a professor of medicine before, probably never will.

All seems ok still, no fevers for ages it seems.


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## Big Jim (31 May 2012)

White counts continue to rise. But lots of little red spots appearing on his body which is worrying. :S


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## Big Jim (1 Jun 2012)

William's still doing well, though it looks like he has chicken pox.
His counts are slowly coming up and engrafting. 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.

View: http://www.youtube.com/watch?v=g0dgaCQ1PFY


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## rusky (1 Jun 2012)

That's good news - not the chicken pox!

Max has just had it. It wasn't us either!

How long before his WBC is recovered?


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## annedonnelly (1 Jun 2012)

I bet you wish chicken pox was the worst you had to worry about!

Fingers crossed for William


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## User169 (1 Jun 2012)

Big Jim said:


> William's still doing well, though it looks like he has chicken pox.
> His counts are slowly coming up and engrafting. 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.
> View: http://www.youtube.com/watch?v=g0dgaCQ1PFY



Very nice! All the best to william.


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## Big Jim (2 Jun 2012)

rusky said:


> That's good news - not the chicken pox!
> 
> Max has just had it. It wasn't us either!
> 
> How long before his WBC is recovered?


His counts are starting to recover (or rather the new stem cells are engrafting), but today he looks really rough covered in chicken pox and has a nasty rash. fevers are back also.

Just hope whatever it is, is containable as not so good today. Very up and down unfortunately.


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## Big Jim (3 Jun 2012)

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 from this morning:


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## Big Jim (4 Jun 2012)

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.


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## Big Jim (6 Jun 2012)

We had a very dodgy day yesterday at the hospital. William was ok, though looked eye(y) when I arrived. But then suddenly became tied. Heart started racing to almost 180 bpm, respirations flying above 50, and he was puffing and panting and Oxygen saturations were low also and he needed an oxygen mask + a fever. In the past this sort of thing has been a step before intensive care admittance, but thankfully a dose of Paracetamol sorted things out. I think, as the Nurse mentioned, things are different now to in the past. Previously, this kind of illness was because of neutrophenic Febrile Sepsis, and treated with Anti-biotics, but he currently has Graft Verses Host Syndrome which is sort of an allergic reaction, so once you get it under control again he calms down. 
Certainly I feel like the past weeks have aged me a great deal!!!

It sounds like they're going to start withdrawing the steroids today to try and ween him off them. So, I think apart from giving his parents a fright, everything is ok.


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## Big Jim (7 Jun 2012)

All better today and yesterday.
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.


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## Danny91 (8 Jun 2012)

Hi Jim. My mother was diagnosed with AML and the past nine months have been a battle. Fortunately she put up a strong fight when the odds were against her and managed to get into remission - hopefully we can stay there. My thoughts are with you and your wife, little William sounds like a strong character and I can only imagine the worry this must be causing you. 

You are giving a great deal towards one day beating this terrible illness and you are an inspiration.


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## Big Jim (8 Jun 2012)

Danny91 said:


> Hi Jim. My mother was diagnosed with AML and the past nine months have been a battle. Fortunately she put up a strong fight when the odds were against her and managed to get into remission - hopefully we can stay there. My thoughts are with you and your wife, little William sounds like a strong character and I can only imagine the worry this must be causing you.
> 
> You are giving a great deal towards one day beating this terrible illness and you are an inspiration.


 
I'm really sorry to hear that Danny91. I know and have seen exactly how horrible AML is - I think the photo I put at the top of the thread sort of says everything. - THat was last year, this year William couldn't even straighten his legs for about 6 weeks after relapse (even with full dose Morphine)!!!
It's extremely aggressive, and hard to treat. It's great your mum's in remission. Will she be going for a BMT? or just the Chemo route?

Please send her my best wishes and I hope she can remain in remission. Also keep strong Danny.

My hope is that in time research will mean that a simple oral drug will be the cure for most Leukaemia's (well, I wish that for all cancers). I've heard of some amazing advances in treating prostate cancers, so if we keep at it - and funding research we'll get there in time.

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


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## Danny91 (9 Jun 2012)

Glad to hear he is improving and the sooner he can get back home the better!

She was prepared to take the BMT however she opted to take part in the clinical trial of drugs in which she was given a double dose of the regular drug. She responded fantastically to this chemo and to be fair her improvement was pretty rapid. We had a few scares when she did get home and she picked up infections. Food hygiene was the cause of these infections two of the three times just as a heads up - we did get told it was likely that she would not recover from one of the infections. She has completely all three courses of her chemo and since being home her counts have risen enough for the hospital to reduce her visits to weekly - it just shows that no matter how bad the odds are there is always hope.

Such a cure would be ideal and on my mothers clinical trials she did take a new drug that she responded well to. It does show that the research is being put to good use and your charity ride will be helping make a difference.


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## Big Jim (9 Jun 2012)

Danny91 said:


> Glad to hear he is improving and the sooner he can get back home the better!
> 
> She was prepared to take the BMT however she opted to take part in the clinical trial of drugs in which she was given a double dose of the regular drug. She responded fantastically to this chemo and to be fair her improvement was pretty rapid. We had a few scares when she did get home and she picked up infections. Food hygiene was the cause of these infections two of the three times just as a heads up - we did get told it was likely that she would not recover from one of the infections. She has completely all three courses of her chemo and since being home her counts have risen enough for the hospital to reduce her visits to weekly - it just shows that no matter how bad the odds are there is always hope.
> 
> Such a cure would be ideal and on my mothers clinical trials she did take a new drug that she responded well to. It does show that the research is being put to good use and your charity ride will be helping make a difference.


 
That's fantastic. A similar story, a 3 year old's parents were told that his Cancer was beyond treatment, and they would have to let it run it's course. The parents begged to try anything, so an adult trial drug was given a go and it worked! Ian Botham has done amazing things towards research in the past, but I certainly feel I need to do my small bit also.

Best of luck to your mum, I know all about infections, etc. As I joked with the Dr's, when a new patient is diagnosed perhaps we should be given a wall chart where we can tick off all the chemotheraphy, anti-biotics, other drugs, virus's, bacterial infections so we can see how we do. William's had so many of these it's truely unbelieveable. But, I think the skill of the Dr's to manage his conditions is again amazing.


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## Danny91 (9 Jun 2012)

It just shows that sometimes you have to take a risk. Hahaha yes it is shocking - it's not just the illness itself but everything that comes with it. I did not realise myself all of the extras that come along with it.

Keep us updated on little William!


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## Nigeyy (9 Jun 2012)

Hey, sorry to hear about his recent stuff.... we're pulling for him from this side of the atlantic. Best wishes, and keep us updated.


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## Big Jim (9 Jun 2012)

Danny91 said:


> Hahaha yes it is shocking - it's not just the illness itself but everything that comes with it.


 
Yes, for sure and this is exactly why research is so important. The treatment, though it works, is extremely toxic and can cause all sorts of side effects. I mean chemo is basically mustard gas pumped into the veins.
What I yearn for (and what drives me) is an oral drug to cure this diease that won't need such treatment. I'm sure the brains who are researching this, and looking further into these cells can achieve this in time. Then hopefully the treatment william is having as we speak will be outdated by a non-intrusive medicine.

here's a picture from today with some new toys. You can see the weight loss, but also the improvement in how he looks.




[/quote]


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## Big Jim (9 Jun 2012)

[QUOTE 1883160, member: 45"]That's a really good pic to see Jim. Much better than the one you posted last week. Good to see him smiling.[/quote]
I think the past picture shows the sort of thing they go through with this sort of treatment. It was horrible to see him like that and again highlights the need to find a less intrusive cure than BMT's. 

It's good to see how much he's improved and how the drugs and the way they've managed him at the Marsden has worked thus far.

Hopefully they'll be home soon


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## Big Jim (11 Jun 2012)

Getting better daily. Still has an iffy stomach, but slowly improving for sure.

Picture is a little blurred.


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## rusky (11 Jun 2012)

He's looking much better!

I see he's giving the "why did daddy draw a green phallus on my picture" look


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## Big Jim (11 Jun 2012)

rusky said:


> He's looking much better!
> 
> I see he's giving the "why did daddy draw a green phallus on my picture" look


 
hahah no that was Amelie that drew that.


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## Big Jim (12 Jun 2012)

Even better still today and dr's continuing to ween off drugs. There's talk of home leave this weekend - which is first step to being discharged. Fingers crossed the progress continues.


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## rusky (12 Jun 2012)

That's great news!


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## Nick bray (12 Jun 2012)

Nice to see things picking up for you.... Donation made...


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## Big Jim (12 Jun 2012)

Nick bray said:


> Nice to see things picking up for you.... Donation made...


Thank you Nick, very much appreciated


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## Big Jim (12 Jun 2012)

rusky said:


> That's great news!


Will soon be able to arrange that Pizza meet up with the kids. I hope nothing goes wrong from now on. Feel we've had our fair share of bad luck now, time for some good luck.


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## Big Jim (13 Jun 2012)

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


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## Big Jim (15 Jun 2012)

We managed to get home





See the pic in the car


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## rusky (15 Jun 2012)

Yay!
Give him a hug from us!


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## growingvegetables (15 Jun 2012)

Oh wow - that *is* good news. Very, very happy for you all. Hey - I know it ain't over yet; aye, the next few days could well be the hardest for you and his mum ....... but it's a huge step. 

Look after him ... and each other.


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## Big Jim (19 Jun 2012)

Was formally discharged yesterday. We still have to be careful with him and he'll have regular check ups. But it's a major milepost for us.


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## annedonnelly (19 Jun 2012)

Big Jim said:


> Was formally discharged yesterday. We still have to be careful with him and he'll have regular check ups. But it's a major milepost for us.


 
Congratulations to you all. Fingers crossed that he gets well and strong soon! Hope he's soon running around and getting under your feet!


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## Big Jim (23 Jun 2012)

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.


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## rusky (23 Jun 2012)

That's great news!


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## Big Jim (24 Jun 2012)

Just a picture from earlier. He's just started walking with a chair and I think he looks pretty well (all considered) in this photo.


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## Big Jim (29 Jun 2012)

Just an update on William. 
He had another check up yesterday at the Marsden and they've upped his steroids a little bit. He definately has low level Graft Verses Host Disease (a nasty itchy rash), but this is good as hopefully it's a sign that he is also experiencing Graft Verses Leukaemia affect (or tumour in the USA). 

We just need to keep an eye on things and hope he doesn't get Viral or too bad GVHD.


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## Browser (30 Jun 2012)

Sorry Jim, only just seen this thread, as a parent myself I can well imagine the hellish emotional rollercoaster you and Mrs Big Jim must've been on, especially as you'd trade places with your child in a heartbeat to end their suffering, but it's looking very positive from the latest photographs. I'll get a text donation sent off a.s.a.p. and good luck with the ride.


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## Big Jim (30 Jun 2012)

Browser said:


> Sorry Jim, only just seen this thread, as a parent myself I can well imagine the hellish emotional rollercoaster you and Mrs Big Jim must've been on, especially as you'd trade places with your child in a heartbeat to end their suffering, but it's looking very positive from the latest photographs. I'll get a text donation sent off a.s.a.p. and good luck with the ride.


 
Thank you Browser. that's good of you.


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## Big Jim (30 Jun 2012)

Here's a picture from today. He's a little bit coldy, so we're hoping he'll be ok. It was his sisters idea to put the glasses on, but they were laughing loads

Managed a bit of training today. 32 miles - 20 of which was off road. not too bad considering I haven't been able to do much whilst WIlliam was in hospital. Hopefully this is a good start.


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## rusky (30 Jun 2012)

He's looking much better, there's colour in his lips & cheeks. Give him a big hug from us 

Where did you ride? I mapped out this route when I was thinking of taking the long way to work. but it doesn't really matter where you start from as it's a loop.

http://www.mapmyride.com/routes/view/79393557/


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## Big Jim (1 Jul 2012)

rusky said:


> He's looking much better, there's colour in his lips & cheeks. Give him a big hug from us
> 
> Where did you ride? I mapped out this route when I was thinking of taking the long way to work. but it doesn't really matter where you start from as it's a loop.
> 
> http://www.mapmyride.com/routes/view/79393557/


I cycled to the Holland and Barret in WOrthing, but was against the wind big time along the coast. Totally flew back (literally it felt).

When I got back, decided a trip to Swains in Henfield to get some fresh veg and fruit, so went up there on the Down's link. Considering I was on the cheapy Carrea subway and had the panniers full of veg on the way back, it felt pretty good. Have to admit I was tired when I got back. I don't think I tool enough fluids on board and my Hay Fever was terrible having cycled in the country. still it's a start.

Nice route. I must admit I avoid roads whenever possible, try to go on cycle paths or offroad


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## NotthatJasonKenny (1 Jul 2012)

Only just saw this thread Big Jim, my hopes are with William and good luck on the ride! Just text donated and will spread the word.

Love to you all.


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## rusky (1 Jul 2012)

NotthatJasonKenny said:


> Only just saw this thread BJ, my hopes are with William and good luck on the ride! Just text donated and will spread the word.
> 
> Love to you all.


It's when you see posts like that you realise that when you chose your user name you chose - unwisely


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## Big Jim (1 Jul 2012)

NotthatJasonKenny said:


> Only just saw this thread BJ, my hopes are with William and good luck on the ride! Just text donated and will spread the word.
> 
> Love to you all.


 
Thank you very much for doing this. Very kind of you


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## Big Jim (1 Jul 2012)

rusky said:


> It's when you see posts like that you realise that when you chose your user name you chose - unwisely


 
yes. 

Actually name comes partly from the poem by Ivor Cutler

View: http://www.youtube.com/watch?v=cHYkTt_ZlsY


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## NotthatJasonKenny (1 Jul 2012)

rusky said:


> It's when you see posts like that you realise that when you chose your user name you chose - unwisely



Yeah, altered it as not totally appropriate for this thread!


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## rusky (1 Jul 2012)

Except the edit doesn't affect quoted posts


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## Big Jim (1 Jul 2012)

NotthatJasonKenny said:


> Yeah, altered it as not totally appropriate for this thread!


 
heheh. no need to. Rusky being Rusky.


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## NotthatJasonKenny (1 Jul 2012)

rusky said:


> Except the edit doesn't affect quoted posts



True but at least it keeps this thread going!


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## coleydp (1 Jul 2012)

Hi James. I've made a donation and am very moved by your situation and the plight of your son. My little boy is 4 and is the world to me as i'm sure your boy is too. I cannot begin to think what you are going through, but doing something positive like your challenge must give you a focus and is a superb way to react to it. You and your family are in my prayers. Good luck with the challenge and God Bless.

Dave


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## Big Jim (2 Jul 2012)

coleydp said:


> Hi James. I've made a donation and am very moved by your situation and the plight of your son. My little boy is 4 and is the world to me as i'm sure your boy is too. I cannot begin to think what you are going through, but doing something positive like your challenge must give you a focus and is a superb way to react to it. You and your family are in my prayers. Good luck with the challenge and God Bless.
> 
> Dave


 
Thank you Dave, that's very good of you 

William does mean the world to us. We just hope that the Bone Marrow TRansplant has cured him and he will go on to live a decent life. Doing this challenge is definately a great focus and is something that I feel I can do to help. There's nothing worse than being in the hospital and not being able to do very much to help. This is something that will make a difference in some way.

thanks again for donation and words


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## Big Jim (7 Jul 2012)

Just an update on William. He's still fever free and his rash is slightly improved, so not much has changed. However his Hickman line hasn;t bleed back for the past few days, so this is a worry as it's not possible to check his blood counts and various levels., We're hoping it'll be ok on monday as it looks like a problem with his positioning rather than a block, but I suppose worst case is he'll need it replaced. The Hickman line is the one you can't see and gains access to his blood via his chest.
Training is going ok. managed 41 miles on Thursday which for me is good. Body felt ok, but a bit headachy after. Any hints on how to avoid dehydration? I mean obviously drink, but drink what and how ofter? What sort of foods I should eat?

Here's a picture from earlier today.


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## rusky (7 Jul 2012)

He's looking well. 

What are you drinking when you ride? Water isn't ideal, squash is better but you may want to try a sports energy drink Tesco sell SiS stuff.


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## Big Jim (7 Jul 2012)

rusky said:


> He's looking well.
> 
> What are you drinking when you ride? Water isn't ideal, squash is better but you may want to try a sports energy drink Tesco sell SiS stuff.


ribena and water. have some energy drinks ordered via amazon, just waiting for them to arrive.

thing is, I need to lose weight also. How much should I drink?


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## rusky (7 Jul 2012)

dunno but there's probably something in the health & fitness section


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## Big Jim (7 Jul 2012)

rusky said:


> dunno but there's probably something in the health & fitness section


HEalth and Fitness section. Blimey if I look in there, that will be a FIRST!


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## Big Jim (24 Jul 2012)

All is still fine with William health wise. His Hickman line (in his chest) decided to stop bleeding back a few weeks back, which is a pain. So they (The Marsden) put him in for it to be removed last Tuesday and a "Port" to be inserted instead. Unfortunately he had a bit of a coldy type thing going on + had a spike of a fever on the Monday when he arrived, but improved over night and was ok on the day of the op. So, he was literally gowned up and at the point of going in when the consultant anaesthetist pulled the plug. So that was that. I think it was also because he still had some other virus’s showing up on the MPA swab which he’d been carrying for months and months, though funnily enough the MPA swab he had the day of the operation showed he was now clear of them (but the results take a few days to come through if that makes sense). 

Funnily he’s been better since last Tuesday, though obviously they still can’t get blood out of him. Currently they’re going to try Brighton I think to see if they can slot him in. Because we’re just west of the east Sussex border, we come under Worthing and they can’t really perform this kind of operation. 

So really in summary, his rash is better, though he picked up a new cold type thing from his sister, he seems to have coped ok. He’s still coldy, but not worryingly so. Really we’re just treading water and hoping that 1, he doesn’t pick up anything nasty which he can’t fight. 2, His Graft verses host disease starts to calm down and the rash starts to improve (which it seems to be). 3, Most importantly I think that the Leukaemia doesn’t come back.

My Twitter is currently playing me up, so waiting for that to come up again and i’ll post a picture so you can see the difference in him.
I managed 53 miles on my bike on Sunday, but had a bit of knee pain near the end which isn’t good. 
Just got to try and keep it up I suppose. drunk loads of isotonic drinks and the headaches weren't quite so bad. Just need to lose more of the belly now really


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## RhythMick (24 Jul 2012)

Good to hear progress thanks. All the best wishes to you as always. 

Knee trouble needs to be watched. Don't forget you won't be doing your family any good if you push it too far and end up unable to drive.


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## Big Jim (24 Jul 2012)

I used to have quite a lot of knee grief about 3 or 4 years ago. My mate kept trying to get me to play footy with them, but always said my knees aren't up to it. I eventually gave the footy a go, and it really improved them. Haven't had any grief for ages. strange that.

I was fine, no probs at all with the ride literally until the last 2 miles, then the knee just felt not quite right. So I thought it was time to call it a day,. I could have done another 5 to 10 miles I think.
I'm hoping it's not an injury as such. It feels fine today, which is good. Just wondering how it'll feel after a few days of all day riding.

out of interest. When I cycle for long distances my fingers go numb. they're still a little bit numb now. Is this normal? are there any ways to stop it happening other than fit suspension?


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## RhythMick (24 Jul 2012)

Big Jim said:


> I used to have quite a lot of knee grief about 3 or 4 years ago. My mate kept trying to get me to play footy with them, but always said my knees aren't up to it. I eventually gave the footy a go, and it really improved them. Haven't had any grief for ages. strange that.
> 
> I was fine, no probs at all with the ride literally until the last 2 miles, then the knee just felt not quite right. So I thought it was time to call it a day,. I could have done another 5 to 10 miles I think.
> I'm hoping it's not an injury as such. It feels fine today, which is good. Just wondering how it'll feel after a few days of all day riding.
> ...



Knees - I'm a bit sensitive to this having fallen heavily on mine at the weekend. Off the bike for a few weeks, grrr ....

Fingers going numb - I had the same issue with long rides when I started cycling for fitness. With much advice and guidance on here I found my bike fit was all wrong. The bars were way too low for me, my saddle was too high and angled nose down. This was throwing my weight onto my wrists causing pain and numbness in the fingers. I haven't had a proper bike fit yet (will do) but have reversed the stem angle, lowered the saddle, levelled the saddle and moved it forward a little. Much much better and no numbness.


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## Big Jim (24 Jul 2012)

RhythMick said:


> Knees - I'm a bit sensitive to this having fallen heavily on mine at the weekend. Off the bike for a few weeks, grrr ....
> 
> Fingers going numb - I had the same issue with long rides when I started cycling for fitness. With much advice and guidance on here I found my bike fit was all wrong. The bars were way too low for me, my saddle was too high and angled nose down. This was throwing my weight onto my wrists causing pain and numbness in the fingers. I haven't had a proper bike fit yet (will do) but have reversed the stem angle, lowered the saddle, levelled the saddle and moved it forward a little. Much much better and no numbness.


oh dear.

think i'll pop down the local Giant shop to see what they can do for me. 

Hope you can get back on the bike very soon.


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## Big Jim (29 Jul 2012)

William's still doing ok. 
Here's a picture of him playing with a new toy. 





It's still a case of watch and wait and the longer he stays well, the better.
Managed 120 miles on the bike this past week which I'm happy with.
Went to the Giant shop and the advice they gave helped my numb hands a great deal.


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## Alex11 (1 Aug 2012)

This is highly commendable, I wish your son well :-)


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## Big Jim (11 Aug 2012)

Just a quick update on William.
He's now just over 12 weeks post transplant, and seems to be getting better as days progress. More energy, the rash is improving, more like a 3 year old really. So all is good.
Here's a picture from a moment ago.




The bike training is going ok. Have found that the Maxxis Detonator tyres that came with my Giant Seek 1 are puncture prone. So am just waiting for some new puncture proof tyres to arrive from amazon. I suppose training isn't just about fitness, it's also about logistics/ getting ready and solving any problems in advance. We've booked flights and the ride will start in Copenhagen on 13th September. Am hoping to upload photos on Twitter throughout.
thanks again for all the donations. Am nearly at £8K now, which is 8 x what I originally wished for.


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## Octet (11 Aug 2012)

Inspirational! Best of luck and I hope your son makes a full recovery!


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## Big Jim (11 Aug 2012)

Octet said:


> Inspirational! Best of luck and I hope your son makes a full recovery!


 
thank you Octet. All is going well, so fingers crossed still


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## AnneW (13 Aug 2012)

I've not been around for a while Big Jim so this is the first time I've seen your post. I'm a Mum and can't begin to imagine what you've been through/going through with William He's looking pretty good in your latest photo  Long may that continue.

My very best to you and yours.

As for your knee, I've had problems with my knee since I fell and landed (with all my considerable weight) on one knee a few years back. I found some exercises on the internet and they seem to help strengthen my knee - got me through C2C and London to Paris.

_Exercises:_

_1. Sit on a bed, keep your leg flat and straight out. Bend your toes towards your head as much as possible and hold this position for ten seconds. Release. Repeat ten times._

_2. Sit on a bed, keep your leg flat and straight out. Bend your toes towards your head. Raise your leg off the bed six inches and hold it. Keep this position for ten seconds and release. Repeat ten times._

_3. Hang your legs over the side of the bed, raise the lower part of your leg so your leg is straight out and hold for ten seconds. Release. Repeat ten times._

_4. Sit and swing your leg over the side of the bed or chair to maintain knee mobility. Do this for about 1-2 minutes._

_5. Sit in a chair, place your foot under the bottom edge of a desk or bed with the leg almost straight. Slowly, lift the leg from the top up as though trying to lift the desk or bed off the ground. Your thigh muscles will tighten and become fatigued. Hold for 10 seconds then relax. Repeat 20 times and then do the same with the other leg. Repeat this exercise three times a day for three or more weeks. _

_6. Hamstring Lengthening Exercises: While sitting in a chair, put your leg straight out in front of you with your heel resting on the ground. Rest both hands on your knee and while keeping your leg straight, slowly slide your hands down the front of the knee towards the foot until you feel a tightening and slight pain in your hamstrings (tendons behind the knee). Hold for 10 seconds, then relax. Repeat 20 times with both legs and perform the exercise three times a day for three weeks. Your hamstrings will loosen and you will be able to move your hands further down your shin towards your foot._

_You will need to restrict your athletic exercise and do the above exercises for a month to get an improvement. You may then gradually return to your normal exercise. The pain may recur. You should then follow the above exercises again. _

_Other exercises for chondromalacia focus on the hip (gluteal exercises) and flexibility exercises. An exercise that directly put force through the knee, especially the knee extension exercise may be painful. _
_If you find the above exercises too painful, then try the one below._

_Lateral "monster walk." This requires a 20-inch piece of thick theraband or tubing tied in a circle and wrapped around both ankles. The patient will stand with the feet shoulder-width apart (never let the feet get any closer than that) and walk sideways across the floor against the resistance of the band. The knees should be slightly bent; the buttocks should be down and back. Stress should be felt in the quadriceps and in the gluteal (butt) muscles. Repeat 10 steps in each direction, 2-3 times._

Good luck!


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## Big Jim (13 Aug 2012)

AnneW said:


> I've not been around for a while Big Jim so this is the first time I've seen your post. I'm a Mum and can't begin to imagine what you've been through/going through with William He's looking pretty good in your latest photo  Long may that continue.
> 
> My very best to you and yours.
> 
> ...


Thank you for the advice and also the donation. Will print off and try the exercises.


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## andy__ (13 Aug 2012)

So sad, i will gladly donate.


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## Big Jim (13 Aug 2012)

andy__ said:


> So sad, i will gladly donate.


Thank you Andy


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## Big Jim (31 Aug 2012)

Just a quick update on William. He's still ok, though had a blood clot in his neck where his Hickman line was inserted. The Hickman line has since been removed and a port inserted which is a lot less intrusive I think as it doesn't have big dangly lines coming from his chest. Anyway the blood clot was treated with daily injections and has since reduced in size a great deal. He has also had a stomach sickness virus, which he seems to have shaken off after a week. He's obviously lost some weight, but otherwise he's pretty much back to normal. His graft verses host diease (his itchy rash) is also improving and his steroids are gradually being reduced. Hopefully soon he'll be off the steroids completely and will be able to return to pre-school.
Here's a picture from a moment ago:





The fundraising is going well and currently sits at £8,319.00. Training has been ok, though I got really fed up with punctures on my Maxxis detonators, so I dumped them for some Schwalbe Marathon Plus which are superb. We're starting the ride on 13th September and I'm hoping my brothers phone will be able to tweet our progress. my twitter is @jameslyne1

I just hope my dodgy left holds up!!

thanks for the continuing support


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## annedonnelly (31 Aug 2012)

Thanks for the updates Jim. In all the recent photos William is busy playing games - that looks like a good sign. Hope he'll soon be back at pre-school and playing with his mates!


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## Big Jim (31 Aug 2012)

annedonnelly said:


> Thanks for the updates Jim. In all the recent photos William is busy playing games - that looks like a good sign. Hope he'll soon be back at pre-school and playing with his mates!


 
For sure. Eating and playing games is a very good indicator. He's good at the moment. Just have to hope the nasty cells don't take over again


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## Big Jim (11 Sep 2012)

I'm flying off to Copenhagen tomorrow, and starting the ride on Thursday. Just wanted to thank all the people who have supported me and donated, etc. I'll post one last time once it's completed. 

William's ok ish still. His NG tube came out of his mouth when he was sick a few days ago, and we're trying things without. 

Here's a picture:


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## pubrunner (11 Sep 2012)

Going by the picture, the little fella looks great.

Have a successful & enjoyable ride - you certainly deserve it !


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## Big Jim (19 Sep 2012)

*Just a final message to say that we completed the 260 Miles ride on Monday 17th September, and I have just arrived back in England. *

*A very cheesy picture of us in the charity T-Shirts:



*

*There are more + GPS positioning of where they were taken on my Twitter page https://twitter.com/JamesLyne1*
*The trip was pretty hard going especially on the Friday where we were cycling directly into very strong winds and rain (The winds were seen to be blowing trees down around Denmark). So it was hard work, but we managed to crack it ok. *

*So, Thanks again for those of you that have sponsored me. We are around £250 off £10,000. *

*I found the advice I received on this forum and Bike Radar invaluable so thanks for that. Particularly the advice about the saddles, clothing and tyres. *

*thanks again*


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## phil_hg_uk (19 Sep 2012)

Big Jim said:


> *Just a final message to say that we completed the 260 Miles ride on Monday 17th September, and I have just arrived back in England. *
> 
> *A very cheesy picture of us in the charity T-Shirts:
> 
> ...


 
Well done good to hear you completed it ok


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## pubrunner (19 Sep 2012)

Big Jim said:


> *Just a final message to say that we completed the 260 Miles ride on Monday 17th September, and I have just arrived back in England. *
> 
> *A very cheesy picture of us in the charity T-Shirts:
> 
> ...


 
Well done !!! 

Nearly £10,000 is a very impressive amount to raise and will certainly be a significant help in treating blood cancers.

Go to the pub and have a pint , in the satisfaction of having done a 'good job' !


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## Robson3022 (19 Sep 2012)

Amazing what a small body can fight through! Well done on the ride an amazing amount of money raised. Just read the whole thing and he looks amazing I'm sure your very proud of him and him I you!!

Well done


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## growingvegetables (20 Sep 2012)

Robson3022 said:


> Amazing what a small body can fight through! Well done on the ride an amazing amount of money raised. Just read the whole thing and he looks amazing I'm sure your very proud of him and him I you!!
> 
> Well done


+1 -- Well done indeed.


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## jefmcg (13 Dec 2012)

Searching for something else on this site, i stumbled upon this and wondered how little William is doing. It's not my place (I have no connection with the family, just found this thread), but the people who supported James with this would probably like to know. William died a few weeks ago.

http://www.justgiving.com/wjl

His father is still working on fundraising and I've just made a small donation.


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## Panter (13 Dec 2012)

Nothing to say. Nothing I can say really. So, so sorry for everyone affected by this.


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## Hacienda71 (13 Dec 2012)

Very sad. I have a friend dealing with a similar problem at the moment and nothing you say can help.


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## Brandane (13 Dec 2012)

So sorry to hear this. Especially when the most recent reports seemed to be so positive. I don't shed tears easily, but felt myself welling up when I read this. Although I don't know the family personally, I feel a connection through the progress reports on this site. If I feel this way, then I can only imagine what James' family are going through. Deepest sympathies.


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## pubrunner (13 Dec 2012)

Very sad indeed !

I feel deeply sorry for all those affected by this; Big Jim has worked so very hard and continues to do so - raising money to support the Hospital Charity for where William was treated. People such as Big Jim, certainly make the world seem a better place.


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## adamangler (13 Dec 2012)

Terrible news. brought a tear to my eye too. having kids myself i can only begin to imagine...
made a small donation, goodluck with future fundraising.


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## pubrunner (13 Dec 2012)

adamangler said:


> . . . goodluck with future fundraising.


 
Indeed !


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## Big Jim (24 Dec 2012)

jefmcg said:


> Searching for something else on this site, i stumbled upon this and wondered how little William is doing. It's not my place (I have no connection with the family, just found this thread), but the people who supported James with this would probably like to know. William died a few weeks ago.
> 
> http://www.justgiving.com/wjl
> 
> His father is still working on fundraising and I've just made a small donation.


Thanks for the mention.

Unfortunately he passed away on 11/11. He just suddenly relapsed. It was fast and aggressive (2 weeks in total) and pretty traumatic watching him die. I mean, we were there 24/7 in his hospital room at the Marsden watching it happen. I think, the problem was that he had a Cancer that there is no known cure for. This is why I'm so pro-research when it comes to medical conditions.

:'(

We're walking the Marsden March this March coming to give the hospital our support. They really are a world class hospital and looked after us very well over the past 2 years.


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## Big Jim (24 Dec 2012)

thanks also for the kind messages and donations. that's really good of everyone 

Just need to do another bike ride at some point.


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## wintonbina (27 Dec 2012)

God bless you mate, having lost my own son I unfortunately know the pain you going through! Stay strong buddy, Tony


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## Icey (3 Jan 2013)

My father passed away fairly recently having had AML so not yet managed to read all the thread. I will be wishing for good weather for when you do your walk, donation made.


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## Nigeyy (4 Jan 2013)

Big Jim, so sorry to hear of your loss (and those words are so sadly inadequate). I know many of the people here on the board were pulling for him and your family. Thoughts are with you and your family.


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## Big Jim (11 Feb 2013)

wintonbina said:


> God bless you mate, having lost my own son I unfortunately know the pain you going through! Stay strong buddy, Tony


 
It sucks. Thanks for the message.


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## Big Jim (11 Feb 2013)

Icey said:


> My father passed away fairly recently having had AML so not yet managed to read all the thread. I will be wishing for good weather for when you do your walk, donation made.


Thank you for that. Aml is pretty damn nasty. Watching it take it's course was horrendous.
RIP.


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