Myelodysplasia

Okay, back from the oncologist.  John doesn't have Non Hodgkin's.  He has something else.  Maybe it's worse.  It has a name.  It is called Myelodysplasia.  I don't really understand what it is, I haven't had time to research it thoroughly yet.  It came about as a result of the Non Hodgkin's I believe.  He has chromosome 1 and 7 translocation.  It means there is something wrong with his bone marrow.  That means he is going to have a bone marrow transplant.  Yep, a bone marrow transplant.  Within one to three years.  If he doesn't he will die.  The problem with a bone marrow transplant (and I know this is true - because I heard John and the oncologist discussing it) is that if you reject the bone marrow you definitely die.  The patient has all his bone marrow removed to have the donor's marrow inserted.  If he rejects the donor's marrow, he can't survive under any circumstances, because he has none of his own marrow left.  Just the thought of that is what frightens us the most.  And I also read on one website that even if the bone marrow transplant does take, it only kills the Myelodysplasia 60% of the time.  What about the other 40% of the time?  

Okay, so that is the bad news.  Yes, I know there are lots of positive things to say.  At least I have him for awhile.  Maybe the treatment will work and I will have him for a long while.  Maybe the transplant will go well and will totally kill the Myelodysplasia.  But I am not thinking of everything positive now.  I am grieving right now.  I don't want to go through this right now.  I will accept it but I don't like it.  Please don't give me positive platitudes today, lol.  There will be lots of time for that later.  I don't want to be encouraged and told everything will be alright (because how do you know?), I want somebody to give me comfort, lol.  Not feel sorry for me, just give me a cyberhug or something, lol.  

Well, the next step is we will visit NIH, and also try to find a donor.  The whole process is going to take one to three years to find a donor, the oncologist thinks.  So we are in for a ride for awhile. 

That's it for now.  Love, Krissy

*Edit -  It is now Oct. 12, '06, and I have learned a lot since I wrote this entry.  So I thought I would clarify a few things. 

John did end up having something worse than the Non Hodgkin's Lymphoma (NHL).  He had Myelodysplastic Syndrome (MDS - bone marrow cancer), and if not given a bone marrow transplant (well really a stem cell transplant), it would turn into AML (a type of leukemia) shortly.  Well, he got the stem cell transplant in January of 2006.  It was a success.  It took care of the bone marrow cancer.  So far.  No bone marrow cancer.  No leukemia.  To date.  By the way, it turns out that the cancer WAS  a result of the chemo from the NHL cancer.  The chemo from the Non Hodgkin's Lymphoma caused the bone marrow cancer.  Crazy, huh?  In the end, John decided to go to Hershey Medical Center for the stem cell transplant.   

How is John doing now?  He has had major complications since the stem cell transplant.  Almost every complication in the book.  I guess in the almost nine months since the tramsplant, I would say he has been hospitalized 7 1/2 or 8 of those months.  In the hospital or day hospital.  We have been living in Hershey, PA during that time.  So we have been in Hershey more than at home.     

John's chances of making it through the first year, we were told, were like 60 to 70 %.  He is fighting to be one of those to make it.  He has almost died many times.  But he is fighting to make it.  Right now we are at home, but he is suffering from something called Autoimmune Hemolytic Anemia (AIHA).  It is requiring him to get transfused every five days needing two units (bags) of red blood cells each time.  He gets weak often a few days before needing the blood.  He was in the hospital about a month a month and a half ago (for a month), trying to get rid of or slow down the AIHA.  He was requiring 7 bags of blood a day at first.  He had to be in the intermediary critical care unit for his heart.  It was a scary time because we didn't know if he would live.  Right now he only requires blood once every 5 days, but the doctors are checking it in the next few days to see if the AIHA is coming back.  

Okay, so we have learned a lot through this.  Keep positive.  Keep God first in your life.  Take one day at a time, one minute at a time, it will be the only way you can get through at times.  Don't be bitter.  Never take a single day, a single breath for granted ~ you don't know when it will be your last.  Love each other.  Love all your friends.  Don't be bitter.

Okay, hope I haven't rambled on too long as usual. 

Love you all, Krissy :)   

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*Edit #2 - It is now May 13, 2007.  I just wanted to update this entry.  John was declared cancer-free on 3/29/07.  Praise God, His wonders never cease!  This was after a scare, when John's doctors thought his cancer was back.  Instead John's oncologist found that the bone marrow cancer (MDS) and the Non Hodgkin's Lymphoma (NHL) were completely gone!  The oncologist is certain that the cancers are gone, because he did extensive blood and genetic testing.

Praise God again, because it appears John's Hemolytic Anemia (AIHA) also seems to be gone.  If not totally, than at least for now.  I noted that the last time I edited this entry, John was requiring blood every five days.  At present he has not had blood since February!  That is three months ago!  John was going to have to have his spleen removed for the AIHA problem but has not had to have it taken out.  Maybe he never will have to have that surgery the way things are going!

John is still having some complications from the stem cell transplant.  He is neutropenic almost all the time now.  Which means his immune system is severely compromised.  He could get a serious infection from dust, dirt, mold anda number of other things.  They tell us it could kill him, but he has done fine so far.  He wears his mask almost all the time.

Hmmm, what else.  John has kidney problems.  25% kidney function.  If he gets down to 20% kidney function he will have to be dialysed.  He will also qualify for a kidney transplant when he reaches 20% kidney function.  I guess I didn't mention in the last edit that he got severe kidney disfunction problems while in the hospital.  This disfunction came about either due to a medicine he was taking or to Graft Verses Host Disease.  He was dialysed in the hospital, and told he would be on permanent dialysis.  But he fought his way off dialysis while in the hospital!  He has been told that he will have to be on permanent dialysis (when he reaches 20% kidney function) in 5 to 20 years.  He is not looking forward to that, but he is taking one day at a time.  Maybe he will never get to the point of needing to be dialysed again.  He is on a strict renal diet (I am making foods that keep the kidney's healthy), and he is doing a great job eating the right things!  I am learning to cook great tasting things from scratch! 

Well, that is about it for now.  You know how verbose I am, I won't go on forever!  Except to say what we have learned:

God is awesome! 

J-landers are our best friends, without them we wouldn't have made it.  Also family. 

Never give up.  Always fight.  Always have hope.

Never get bitter.

Never take a single breath for granted.  Dance.  Right, Tammy? ;)

Take one day at a time, no, one second at a time.

When you have made it through, pull others through too.

Love you all with all my heart, now and forever, Krissy :)    

Tags: Myelodysplasia, Non Hodgkin's Lymphoma, Hemolytic Anemia, Bone Marrow Transplant, Stem Cell Transplant, bone marrow cancer, cancer, dialysis, kidney transplant, transplant, remission, grateful as all get out!