neutropenic Alex's online moblog

by neutropenicalex

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Hello friends. This is My "moblog". I will try to update it everyday, from my lovely hospital bed.
keep updated :) and feel free to e-mail me at aj_saville@nerdshack.com. I will email you back
xxxxx

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Alex Saville 1st December 1986 to 3rd January 2007

(viewed 129160 times)
As you will be aware, Alex sadly died early on Wednesday 3rd January. He never lost his sense of humour. Alex much enjoyed blogging and reading other people's blogs. He became very fond of many members of the Moblog community. You were all incredibly supportive for which we thank you.

If Alex's story has interested you please consider joining the international bone marrow donor register or becoming a blood donor. We, his family, will always be grateful to all the wonderful people who were prepared to help a stranger in this way.

If you would like to give to a charity, in his memory, please consider The Elimination of Leukaemia Fund which helps people with blood cancers.

Thank you.

Tim and Jenny (his parents), Chris (his brother) and his grandparents

(The picture shows Alex aged 17 in his favourite jacket)
8th Jan 2007, 10:49   comments (166)

Ha

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I know the puffs name.
i could say. But that would break all online, you know, rights and
safety things. I dont trust that tms one inch.Heehe i know his name too. You dont know mine thugh do you....... Bin
lying all this time even on city hospital, which id like to say isn't
real, coz im not actually ill....... Its all a bit of japes. HeheAny........ Thankyou for the card.
Where are those doctors? :)
7th Dec 2006, 14:56   comments (46)

I know puddlepuffs name :)

(viewed 3100 times)
I love the card its funny.
My fave bit is how the hippos are happy to eat soaking wet sponge
birthday cake. Hehe.Puddlepuff when im well, first place im going is Amsterdam for a
holiday. Though i prefere to call it Hamster Jam....Thank you,how does everyone get my address is it from studlondon.co.uk?
Soon ther will be and alex saville website!!!! Il make it when im out.
Its guna be sweet.
7th Dec 2006, 12:58   comments (8)

Donate !!!!!!!!!!!! Maybe search for more mesenchymal stem cells!!!!! Please please please

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HelloIv been playing nintendo ds with a friend. Nintendogs.Heres the update.Im still in hospital. Bin having physio to try and get mobile! I have
some exercises i can do in bed now. Which is good.Skin seems to be ok, flakey and dry.Liver blood results were getting better, but one has gone wrong way for
couple of days?
Dr not sure why? But blood results fluxuate (spelling)One reason maybe is that they have found a virus in my ...... Poo poo,
stole........ What ever you wana call it.
Can effect liver, kidney, lungs.
But they've found it in such a small amount that they dont know if its
doing anything. Iv started a drug to kill it today.Dont really know about bowel coz hasn't been scanned for few days.I saw the dietician, she guna find out what the best foods to eat are
for me. (So i can get some weight on)And they are going to try track down some more mesenchymal stem cells
!!!!!! That would be fab!!!!!!
Coz then i get more chance of them working!!!!
Sweet. Please please please ..... I hope they do.I have more info on how they are made and stuff.
(I was wrong before)When someone has a stem cell harvist its put in a jar. When all the stem
cells die left behind are mesenchymal stem cell, a very primative cell.When injected into someone it seems to find damaged tissue, then turn
into that tissue (obviously not damaged)
With GVHD they do something even better.... GVHD is caused by a type of
white blood cell (the T-cell) attacking the organ. When mesenchymal stem
cells bump into the T-cell attcking the organ they let off a chemical
that shuts down the T-cell. They then turn into the tissue like i said
earlier.
So you get double action.Hehe i sound like a mens razor advert.Oh and the best thing is.... You dont have to be a tissue match!!!!!!
Hammersmith royal infirmary do the stuff. Is that in london???So everyone please !!! I want some more !!!!!!!
Hehe your cells will become part of my bowel.Donate!!!!!!!!!
5th Dec 2006, 19:14   comments (11)

Update!!!! Maybe search for more mesenchymal stem cells!!!!! Please please please

(viewed 1855 times)
HelloIv been playing nintendo ds with a friend. Nintendogs.Heres the update.Im still in hospital. Bin having physio to try and get mobile! I have
some exercises i can do in bed now. Which is good.Skin seems to be ok, flakey and dry.Liver blood results were getting better, but one has gone wrong way for
couple of days?
Dr not sure why? But blood results fluxuate (spelling)One reason maybe is that they have found a virus in my ...... Poo poo,
stole........ What ever you wana call it.
Can effect liver, kidney, lungs.
But they've found it in such a small amount that they dont know if its
doing anything. Iv started a drug to kill it today.Dont really know about bowel coz hasn't been scanned for few days.I saw the dietician, she guna find out what the best foods to eat are
for me. (So i can get some weight on)And they are going to try track down some more mesenchymal stem cells
!!!!!! That would be fab!!!!!!
Coz then i get more chance of them working!!!!
Sweet. Please please please ..... I hope they do.I have more info on how they are made and stuff.
(I was wrong before)When someone has a stem cell harvist its put in a jar. When all the stem
cells die left behind are mesenchymal stem cell, a very primative cell.When injected into someone it seems to find damaged tissue, then turn
into that tissue (obviously not damaged)
With GVHD they do something even better.... GVHD is caused by a type of
white blood cell (the T-cell) attacking the organ. When mesenchymal stem
cells bump into the T-cell attcking the organ they let off a chemical
that shuts down the T-cell. They then turn into the tissue like i said
earlier.
So you get double action.Hehe i sound like a mens razor advert.Oh and the best thing is.... You dont have to be a tissue match!!!!!!
Hammersmith royal infirmary do the stuff. Is that in london???So everyone please !!! I want some more !!!!!!!
Hehe your cells will become part of my bowel.
5th Dec 2006, 19:06   comments (11)

Test test test

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Alex saville here.
4th Dec 2006, 10:58   comments (10)

Paintist!!!!! Thankyou soooooooo much!!!

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Everyone!!!! Paintist is soooo good! She has sent me some manga
books!!!! And a wicked card!!!!! With my cat Dizzy
on..........................You could say that the other cat is elsie (a cat who lives up the road)Thank you soooo much!!!How did you know i love comics??Thanks :)
Oh a paintist come on? Thats hardly late
2nd Dec 2006, 11:35   comments (6)

Im 20 tomorrow

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This is my last night as a teenager.... Weird...
Still in Hospital with the thinnest most wasted away legs in the world.Man its hard.
Basically i had GVHD (graft-verus host disease) pretty damn bad....
This means that the top up of stem cells from my donor attacked my skin,
bowel and liver (usually it only happens to one or 2?
My consultant says that on a scale of about 1-4 i got about 4 on the
bowel, 4 on liver and 2 on the skin.
Pretty bad i'll say.
Because of this i was first put on steroids (to suppress the attack)
Then Campath (a man made cell that suppresses your immune system alot) i
had it before my original transplant.
Then they put me on cyclosporin. I had this before my original
transplant too, its another immuno-suppressant....
Then as you know i was given mesyn-chymal stem cells (spelt wrong im
sure) which are stem cells that are left over after bone marrow donors
given cells. I have no idea how they work, but they heal cells
apparently? And seem to work with people suffering from GVHD and
apparently people who have had cardiac arrests.
The dermatology consultant told me today im the 5th person in the UK to
have them. Which sounds pretty cool to me.
They haven't kicked in yet but we'll see? Maybe they won't? Hope they do
though.Things are getting better i guess, still in a pain at times, still on
morphine, but a lower dose by far!
I have a blocked left ear thats giving me headaches. Still have diarehea
(dam this word?!? I can spell it!!!!) , but that will get better.
Still have jaundice, but its getting better and better. I have nice
yellow eyes, less yellow than before though.
Skin is flakey, but alot better than before. And the feet still have
their kneels on hehehe..... Man i cant believe i peeled basically my
whole feet off like socks. Weird.......My legs are like twigs!!!! No muscle at all. The physio comes each day
to teach me to walk again.
I can shuffle around the room with a zimmer fame, but very very slowly
and painfully. I have to lock my knees to do it.
Going from sitting to standing is the hardest thing though, i have to
swing my whole body up, and yell out in pain as the physio gives me a
lift from the hips to help. Its going to be so hard to get completely
mobile and out here for xmas but i'm determine to do it.....There you go. Thats the update!!!!
And its my birthday tomorrow :) hehe
I had my 19th birthday in hospital too.
Couldn't really care that im in here for my birthday, im just happy to
be alive.
But christmas is something different! I really really want want to be
home for christmas..... I decided i have to. So im going to.Happy birthday to me. The big 20..... Tomorrow.
30th Nov 2006, 21:52   comments (27)