Excellent. I am so very thankful. That is good of you.
Thanks again.
My 3 year old has cancer, and what I'm going to do about it
- Thread starter Big Jim
- Start date
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Thanks again.
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.
phil_hg_uk
I am not a member, I am a free man !!!!!!
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.
Thank you so much.
You are very welcome
smokeysmoo
Legendary Member
- Location
- Bolton, not very far from Nob End
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
[EDIT] I've also shared your JustGiving page on my Facebook and Twitter pages too Jim
Mad Doug Biker
Just a damaged guy.
- Location
- Craggy Island
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.
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.
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.
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.
Thanks seashaker. I appreciate your support.
Mad Doug Biker
Just a damaged guy.
- Location
- Craggy Island
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!)
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.
What happened if you don't mind me asking?
Yes I remember hearing of a sportsman who had had it, although I'd need to look it up
Woohoo! always good to hear!
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
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.
It has certainly moved on leaps and bounds since the late '90s!
It is a big step to take obviously, but never say never!
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 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 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!!
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.
Mad Doug Biker
Just a damaged guy.
- Location
- Craggy Island
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
I seem to remember spilling the turps, so the place stank of it for ages
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.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!)
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.
What happened if you don't mind me asking?
Yes I remember hearing of a sportsman who had had it, although I'd need to look it up
Woohoo! always good to hear!
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
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.
It has certainly moved on leaps and bounds since the late '90s!
It is a big step to take obviously, but never say never!
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 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 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!
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!!
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!
And to you, William and the rest of your family.
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
We had an issue with moon sand earlier this year. went everywhere in the room!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
