Re: [MOL] Tonia... HI:)/back at ya!!! [00697] Medicine On Line


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Re: [MOL] Tonia... HI:)/back at ya!!!



Pauli-
So good to hear from you!!!!

I have been thinking about you  lately.  My dad is 26 days post transplant.  
Thursday he will have a biopsy to see if my brothers stem cells are  working 
and to see if the leukemic cells have returned.  He is really on a "down 
mode" these days.  I haven't seen him in over a week!!! I have been sick and 
cannot take a chance of passing  this on to him.  We talk on the phone and he 
is down.  

I told him it's because he hasn't seen my smiling face.  LOL

Dad is hooked up to an I.V. and receiving an antibiotic to help combat GVHD.  
This occurs daily for 4 hours for at least 12 months.  I would be bummed 
too!!!!!
It's better than the alternative though......

Regarding your dad ( my kids call my dad Papa too ), IS he in remission?? Was 
a biopsy performed  post chemo.  Typically it is done 30 days after chemo.  
My dad had topotecan and ARA-C also.  That was his first bout with chemo.  
The second time he received M.E.C.  The first regiment has not been around as 
long but has had some positive results.  M.E.C.  has been used for over 20 
years (I am pretty sure that number is accurate).   It is more standard with 
AML patients.  I was concerned for the doctors to use an "old " regiment, but 
as our doc stated:  just because it has been around for a long time, doesn't 
mean it isn't good.  Well, he was right because it worked!!!  Daddy was in 
remission for a  whopping 2 weeks.

I do not want to sadden you, I want to give you as much accurate information 
as I can to help you and your family make sound and informed decisions.  AML 
does not have any history of ANY chemo therapy which is successful in 
treating our dads cancer.  The average time for remission is 2 weeks to 9 
months.  I am telling you this so IF he is in remission and IF he relapses,  
know it is expected.  I will pray your dad will beat the odds.  My dad is.

Regarding the blasts   30% is really high, as I am sure you are aware of.  My 
dads were at 21%, very similar.  Always remember there is hope.  Thank GOD 
your dad is home and recovering.  There was a time we thought dad was 
possibly not going to make it.  Extremely high fevers for 2 days and a fungus 
infection.....The only blessing is that my dad doesn't remember it.  
Lillian said it best.  Kids will be kids.  I believe it is best if the 
children speak from their hearts and  we allow them to ask any questions.  I 
have explained how serious my dads illness is  and have answered their 
questions.  My oldest is 9 and she understands quite a bit.  Down to the 
chemo and the bone marrow.  She also realizes Papa may die....  My 2 1/2 year 
old and 5 year old are making bets on how long Papas hair is because I told 
them it is starting to grow back.  HA HA HA

I wish I had great words of wisdom to pass on to you but I don't.  Do what 
feels right and pray about it.  I am sure your dad understands all that is 
said is said with love...

One last thought before I go to sleep.  It's 12;30 am and I am tired.  My dad 
does not like to know all the details or all the  statistics.  This is how he 
needs to handle it.  As long as your parents are aware of what is in store 
and that the battle has only just begun ... let them have a few days of 
peace.  Now is when your work begins...

Let me know how I can help guide you down a smoother path.  I hope my 
experiences will help you find the answers you need quicker.

Good night my friend.

Good night dear Lillian..

Good night John Boy..  just kidding

Tonia
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