Gulenay.... Part One

December 31, 2012

> Hi there,
> my name is gulenay  i'm from Turkish Republic, and i'm a 24 years old girl who has a lukemia (aml m5)
> i found you from your blog.. and i'm gonna have double umbilical cord blood transplantation.. and i'm scaring.. what shoul i do? what u recommend us? help us pls
>

 

It takes a long time but it works.  So when do you have the transplant?  I would be glad to help any way I can.   

 

When is your transplant and who is your caregiver.  One thing I know is you will not remember a Lot.  I have a friend with Turkish family. We would be glad to answer your questions

 

 

Tuesday, January 1, 2013 7:00 PM

Just checking in.  Double cord kids have a very different set of complications.  Mary Elizabeth is back in the hospital.  She had her transplant about a year ago. This is her first illness and is pretty sick but no one is too worried.  I have never seen anyone not graft.  One boy had both of the cells stick around.  He is doing fine. 

January 12, 2012

Hey Gulenay.... I hope things are going well.  I have not heard from you but I know how sick you can be during this process.  Keep trying to drink, no matter how much it hurts and even a bite of food if you can manage will help in a long run.  Mary-Elizabeth drink water with some mint in it.  I bet someone could take some fresh mint, let it sit in water for awhile and then try it.  I think it is better if everything is room temprature.  Hang in there.  It will be better. 

 

I am sure you will write when you can.  You are in our thoughts and prayers.

 

hi there!

today is the first day of chemo. i mean -7. 19th of this minth is the certain transplant date.. i was a little bit busy so i forgat to write you.. they send me other parts of hospital (nose ear trouht, eye, teeth, lung etc..) for control to before transplant..

tey gave me a paper today and and somr boring things writing on it.

example: during the 1 year after transplant dont go crowded places such as shopping centers, never eat outside don't eat the goods whic are close to soil such as mushrooms and greenness etc.. etc..

is that rules really very important?

there is no problem about nutrition now. i drink nearly 3 litters of water every day and eat everything (i mean allowed by the doc.)

how is your doughter? and. and i really wonder that how old is she?

 

 

Oh, Honey, very important rules.  Your body will not have any way to fight simple things.  Mary-Elizabeth is 20 and she just spent 10 days back in the hospital for influenza.  You can eat most everything except it all has be be washed and cooked.  Salad is okay be it has to be washed before it is eaten.  What they are most worried about is Fungus.  It is the hardest to treat.  We did eat out but were really careful about where and asked lots of questions.  We at good places.  In 8 days you will be a newborn baby.  Never having experienced any of the bugs in the world. 

 

Just a hint. When you get the transplant, have some oranges and lemons in your room and have people squeeze the peel.  There is a preservative  in the cells and as they are infused into your body, there is a smell kind of corn soup.  Not awful but having some oranges around  helps.   

 

Good luck and keep in touch.  I know there are times you wont be able to do so but we are thinking about you.  

 

i have fungus now in my lung :( it appeared 16 days ago and they started a medicine which name is ambisome.. still continue.. :( have you got any list what you can eat what you can do after transplant? i want to compare with mine. and do you know any medicine or  somethin support to make stronger the immune system? this sentence is very wrong but i know you're gonna understand :)

what's the diagnosis of Mary Elizabeth?

Aml?