Thursday, June 30, 2005

Making Progress (John's Choice of Title!)

Time for a John update.  First I wanted to correct something I said in previous entries.  I said that the Non Hodgkin's Lymphoma that John had six years ago caused his Myelodysplasia Cancer.  This is not true.  Non Hodgkin's cannot cause Myelodysplasia.  But the chemo to get rid of Non Hodgkin's can cause Myelodysplasia, we found out.  So it looks like the thing that saved his life and killed off the first cancer caused the second cancer.

Another thing that I said was that John would have to have his bone marrow removed when he had his bone marrow transplant.  This is not exactly correct.  What is going to happen is that they will destroy the bone marrow chemically.  Then they will add somebody else's marrow into his bones.   

Sorry for the gorey details above folks, I just didn't want to be giving you wrong info.

Now on to less technical matters.  NIH called Tuesday and had a chat with John.  After a short period of time they said they were not interested in doing a transplant on him because they are only interested in sibling match bone marrow transplants right now.  And since John has no known siblings (he is adopted) they were not interested in him. 

Now John is searching to find which bone marrow transplant treatment center he wants to have his transplant done at.  When he decides which one, the center will help him find a donor.  This could take anywhere from a few months to three years (to actually never) to find a donor.  

It has been a rough week for me.  I have been doing a lot of research trying to help find which place would be the best center.  There are also a lot of different kind of transplants.  At times I have felt overwhelmed, at times frightened, at times sad, at times my thoughts have just raced and raced.  Through it all I have kept my faith and I do have lots of hope and have been very proactive.  At one point my hopes were almost dashed when I read that there was only a 20% survival rate for someone who had a bone marrow transplant who had John's disease.  Then today I found out that there is a 70 - 80 % survival rate.  I hope that figure is correct.  My emotions are going up and down like they are on a roller coaster.    

John has been fatigued.  He has severe anemia.  He sleeps a lot.  But he also does a lot of his normal activities.  I am very proud of him.  He is a real trooper!  If I were him and I was just diagnosed, I might sit on the floor and cry and do nothing for two weeks!  But not him.  He does housework, drives me to my appointments (I can drive but he likes to!), listens to music, reads - all kinds of things he did before he was diagnosed.   Bless his heart.  

He tries to keep a positive attitude.  I asked him how he does it and he says by not dwelling on the MDS all the time.  I asked him how he did that (because I certainly am not very good at it right now!), and he said to just do normal activities, and if he catches himself thinking about the MDS, to stop, and just start going about doing normal things.  He does it as a CHOICE.  I will have to remember that.  And he also chooses to be positive.      

Well, that's enough for now.  I love each and every one of you lots.  And I want to thank each of you who have emailed me or IMed me.  Or prayed for me and John.  You have helped us more than words can ever express.  Love, Krissy 

28 comments:

  1. John has the right attitude Krissy.  It is good of you to do all that research but you can get lots of conflicting information and that all stresses you out more.  Try to relax a little more now and John in with John and do things that you like whilst you are waiting for everything to get going.  God bless.

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  2. {{{{{{{{{{{}}}}}}}}}} for you both

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  3. sarajanesmiles6/30/2005 6:17 AM

    ((((()))))'s from me too hon, for both of you.
    Sara   x

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  4. sarajanesmiles6/30/2005 6:19 AM

    I forgot to say how much I admire the way that you and John are coping.  It must be so hard to stay positive when there's such conflicting information around.  Thinking of you both.
    Sara   xxx

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  5. springangel2356/30/2005 7:07 AM

    You both are doing all the right things...research and a positive attitude will prevail.  Thinking of you both always with love and hugs.
    Joyce

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  6. Krissy, Have you visited this web site?  http://www.managemds.com/patients/about_myelodysplastic_syndromes.aspx  IT looked prety good to me.   . . .Dadeo. . .

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  7. eternallife236/30/2005 8:14 AM

    I am still praying for you guys. I Believe in miracles.
    Hugs *Louise*

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  8. Big smile out to my John-John :D!! xox
    http://journals.aol.com/valphish/ValsThoughts

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  9. Yes, the treatments used to beat one cancer can indeed,put one at risk of a  secondary cancer.  I worry about this with my daughter...but it is not like any of us had a choice, right?  We had to agree to the chemo, knowing the risks, in order to save their life the first time around!  John seems to be handling all this very well.  I am sure that having YOUR love and support helps him immensely!  These updates are wonderful.  You guys make a great team...keep working toward the goal...to find a match!  And continue to love and enjoy each other along the way...  Love to both of you...JAE

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  10. promiseluv3726/30/2005 10:41 AM

    I'll keep praying for john, there has to be a suitable donor out there somewhere.  That sort of angers me that the one place only does sibling transplants at this time..
    I am so proud of him for keeping a postive attitude, I know it's tough,  You will be able to also.. it just takes time
    All my love,
    Promise

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  11. dbaumgartner6/30/2005 11:44 AM

    Oh sweetie you are being so strong and John is so lucky to have you by his side.  I pray the right center will be found and the transplant a success!!!!!

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  12. I hope you find a matching donor very soon. Stay positive and take good care.  (((((()))))) to you both .

    Sandra xxxx

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  13. I will continue to pray for you and John...One day at a time....let me know if there is anything else I can do.............................Kasey

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  14. jules196420016/30/2005 12:49 PM

    still thinking of you both and hope you find a donor soon..............Jules xxx
    http://journals.aol.co.uk/jules19642001/Itsmylife/

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  15. myheartsaysso26/30/2005 4:03 PM

    I wonder is there a way that he could have his records opened on his adoption to find possibly a sibling? relative ? I heave heard of things like this done before inthe past in cases of needing a donor.. If I wasnt sick and had a match I'd give my marrow for your hubby.. :) Mel

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  16. The idea of John accessing his birth records is a very good one, he has every right to see them. That said, love and hugs to you both.
    Sylvia xx

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  17. I certainly admire John's mental ability to keep his emotions in such control, and live his life on his terms.  You are such a dedicated wife to him, and I hope his example gives all of us a window into how we should view our lives.  His faith in God will sustain him, and we are all praying for his success and positive outcome with such trying circumstances.  Looking forward to hearing more.
    Take care and God bless,
    -mark-

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  18. Hello,
    I saw that you stopped by my journal and I wanted to check yours out too. I will pray for you and husband. You BOTH are very strong people. I know this is a very hard thing to go through. It is best to see the positive like John does :) I personally would go through so much if this were to happen. Sure at first I'd be sad, maybe disbelief....then I think maybe comforted that i get a chanceto give this thing a good fight; do and say all the things I've always wanted to do!! I would feel greatful that I got that gift that most people don't have.
    I guess I'm really optimistic and my faith like yours and your husbands will get me and you both through anything!
    You are a popular lady I wonder if you'll even read this :) Take care.
    Thanks for the support.

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  19. KRISSY STILL PRAYING ON MY END SWEETIE
    http://journals.aol.com/hope4meeeee/MYTHOUGHTSANDFEELINGS/
    EVERYONE IS WELCOME TO VISIT ME IF THEY WOULD LIK

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  20. You both are in my prayers.  Remember that with God nothing is impossible !
    'On Ya'  - ma

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  21. sonensmilinmon7/01/2005 11:30 PM

    Just from the title, I can tell John is trying to remain positive.  I will continue to keep both of you in my constant prayers.  Much love to both of you.

    Monica

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  22. Thanks for the correction.  Yes, they will reduce John's bone marrow production chemically for a transplant.  Keep us updated.
    Best,
    Judith
    http://journals.aol.com/jtuwliens/MirrorMirrorontheWall

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  23. thefaircolleen7/02/2005 8:16 PM

    Thinking of you both .I like Johns positive attitude and will pray for him too.

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  24. dakotarose28527/03/2005 9:30 AM

    Krissy, I know these are difficult times for you and I think you are a very brave young woman.  I'm glad you continue to write in your journal.  I think it's excellent theray.  I, on the other hand, might just hide in the back of a closet, afraid to face it.  You are a great source of strength for John at this time and I can tell he's very glad to have you on his side.  Stay strong my friend.  I am one of those who continues to keep you in prayer.  Susan

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  25. Thanks for the update. John is just amazing! His attitude can only HELP in his recovery. As for chemo...talk about the cure being worse than the disease. My John's Dad got chemo for his prostate cancer (it had spread outside the prostate) and that chemo treatment gave him lymphoma. I hope research finds a better way soon.

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  26. John's got the right idea... A good attitude goes a long way! I have a question. I know that they have to match John's marrow with someone elses, but how hard is it to be tested to be a donor? I wouldn't mind being tested if I knew what to do, and I'm sure there are others here in J-land who would do it to! I know it's a long shot, but the more people tested, the better his chances of finding a donor! Just a thought! You guys hang in there...
    http://journals.aol.com/astaryth/AdventuresofanEclecticMind

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  27. beachmelissa37/04/2005 11:12 AM

    My prayers and thoughts are with you.  
    You have a lot on your plate.  Love, kindness, understanding, and your positive attitude will go along way.  A long way in your life together.  A long way in the life of your mother too
    Hugs.

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  28. love2sing20077/06/2005 10:22 PM

    God so has you in the palm of his hand!  Did you call Fr. Rookey? -Kellen

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