Wednesday, November 23, 2005

John's upcoming transplant

Hi everyone!  Happy almost Thanksgiving!

John now has a date for his transplant.  Well not really an exact date.  We know it will be sometime in January.  John had his appointment on Nov. 17 at his Transplant Center (Hershey Medical Center) and was told his bone marrow transplant (BMT) would be in Jan.  We were told to come back on Dec. 22nd and we would find out the exact date in January that the BMT would be. 

You probably read in my Sometimes I Think journal that John's MDS is turning into AML.  AML is like MDS leukemia.  It is very serious and often deadly.  He was told that if he did not get the BMT, there was a 100 % chance he would get the AML during his lifetime, and a 50 % chance he would get it within a year.  That is why he has to get the BMT in Jan.

Now on to other things I wanted to explain to you.  Some of this will be the same as the other journal and some of this will be a little different, as I have come to new understandings.  

John was told that he will get a non-ablative transplant instead of an ablative transplant.  It is also called a "Reduced Intensity Transplant".  As I stated in my Sometimes I Think journal, this means that he will be having less chemo.  That should be a lot easier on him. 

He will also have a greater chance for survival.  One of the reasons his transplant oncologist didn't want to do the regular transplant is because there was only a 60 to 80% chance of survial he told us on Thursday.  We didn't like the odds.  Well, I was just found out with the RIT (the kind he is having) the chance of survival can be as low as 73%.  Yikes.  No, I did not tell John.  I don't want to.  I want him to think positively.  I am not going to panic.  At least not today anyway, lol.  I have a good feeling that he is going to live.  

Anyway, what I am trying to say is this.  The odds of living through the transplant with the non-ablative transplant that he is having are better.  But there is a down side also.  Let me see if I can explain it simply.  Do you remember when I said in another entry that during a BMT, if you did not engraft (except the donor's marrow within 45 days), that you would simply die?  Well this does not hold true for John's new transplant!  Because he will still have some of his own bone marrow in his body, and some of the donor's marrow.  The chemo will not have killed off all his own.  So the positive side is that he can't die from lack of engraftment!  This is great!  The down side is very bad.  It is this.  If he fails to engraft, and the marrow is not killed off, neither is the cancer.  He retains the MDS, and possibly goes into the AML.  Drat, he may be fighting this cancer for years to come.

And there is still the possibility he will get Graft Verses Host Disease (rejection of the donor's bone marrow), and a white blood cell infection (both of which you can die from).

Ok, now that I have gotten the yucky medical stuff out of the way, I will try not to mention them all the time.  

I still do not think he will die. 

The next time I write an entry I will try to put some more positive and interesting things in here.

Oh, we will probably have to be staying in Hershey for more like two months than one month, like I initially thought.  We will have to wait for John to engraft.  First we will be staying with John in the hospital, but it won't be more than a week (unless something goes wrong).  Then we will be staying in something called the Hope House which is across from the hospital.  John will go to outpatient during the day, and then get to come back and stay at night with me at the Hope House.  Yay!!!  The Hope House is nice.  You get your own room, and share the rest of the house with the other residents.  I am pretty sure they have computers there, in which case I will keep up a journal so you all will be able to know how John is doing.

Well, thanks for letting me share, I hope I didn't bum anyone out, lol.  Have a great Thanksgiving, rest up, and eat a lot. Oh, and for my UK friends, and international friends, sorry if I said Happy Thanksgiving.  I keep forgetting you don't celebrate, lol.  Just have a great day!

Love, Krissy :)        

Monday, November 14, 2005

The Nurse Called

Sorry I haven't written in so long.  My life has been kind of busy.  You see, I have been helping John prepare for his upcoming bone marrow transplant because it is going to come sooner than we expected.  Let me back up and start at the beginning. 

I don't know if you read about it in my other journal, but John originally had an appointment on Dec. 1 to see his oncologist in Hershey.  But then after his last bone marrow biopsy (a few weeks ago), I was called on the phone, and told by the nurse that the results of the bone marrow biopsy were sent to the Mayo Clinic.  Then she called again, and told me that they had found something wrong, and that he would have to have the transplant right away, and that the Dec. 1 appointment was cancelled and that John now has a Nov. 17 appointment to discuss the transplant.

I guess she couldn't tell us over the phone what was wrong.  Maybe because she is a nurse.  But gee, that leaves me wondering.  Is there something seriously wrong with Chromosome 7?  That makes the MDS harder to treat.  Has he gone into AML?  That is a type of leukemia that MDS goes into when it is advanced.  It is not regular leukemia.  It is like MDS leukemia.  It is harder to treat than regular MDS and the prognosis is not as good. 

OKay, now my mind has gotten away from me, I will admit.  So I will immediately cut it out.  Those are things that have only briefly run through my mind.  It does not help to think about them.  I will find out on Thursday what is going on.  And then we will deal with it.  Meanwhile, I just won't think about them.


So, I just asked John how he was doing.  "I am feeling hopeful," he replied. 

I am so proud of him.  He has such a good attitude.  He has become more positive lately and has decided to fight to live.  That's my John that I remember who got in the fighting mode to beat the Non Hodgkin's Lymphoma.


So everyone, could you please pray for John this week?  His appointment is on Thursday. 

Wishing you all a great week, take care and stay close to the ones you love, Krissy :)