Thursday, June 16, 2005

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 :)   

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

*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 :)    

94 comments:

  1. promiseluv3726/16/2005 8:10 PM

    God just when you think things are okay life bite a person in the ass.  AND HARD.  Sweetie, I'll go on and on later about hanging in there.. but for now I surround you with love.
    Grieve it .. that's what has to happen, take as long as you need, then go on to what's next, (don't ask me what that is.. I"m still grieving.
    (((((((((((((((((Krissy))))))))))))))))))))
    Luv and FAITH!!!
    Promise

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  2. chemelia26726/16/2005 8:15 PM

    Oh Krissy I'm so sorry to hear about John's illness.  When I read your entry about John having to go in for test I hope and prayed for a good outcome.

    If you need to someone to talk to or a shoulder to cry on, don't hesitate to email me.

    You have always been so nice leaving comments in both of my journals, and now I want to return the favor.  

    Like I said you need somone to talk to email me at Chemelia2672@aol.com

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  3. willandgrace19866/16/2005 8:21 PM

    I love you, Krissy.  Love, Grace

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  4. Krissy, I am sorry for the diagnosis.  Do you know the details on getting tested as a potential donor?  Let us know.  You have many friends in J-land.  If we can't do anything else, we can help find him a match...you need to grieve for a while.  Take as much time as you need.  JAE

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  5. Krissy - i've just read up on bone marrow donations .. please let us all know if you need donations and i'll head down there to get on the registry
    sending you what i'm sure are much needed hugs right now
    pamela
    http://journals.aol.com/his1desire/GirlsHeadNoise

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  6. Keeping you and your husband in my thoughts and prayers.

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  7. (((((((((((((krissy))))))))))))))  
    hope that makes you feel a little better...
    --Annie =)

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  8. Came your way via Promise. (((((KRISSY AND JOHN)))))) As you requested...we are here for you!! Keep us posted on donor info!!!!
    Jodi
    http://journals.aol.com/jouell3935/Haveyoulostyourmind

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  9. sonensmilinmon6/16/2005 10:00 PM

    Wish I could give you a real person hug, guess this cyber hug will have to do.
    ((((((((((((((((((((((((((Krissy))))))))))))))))))))))))).  I'll be keeping you and John in my prayers.

    Monica

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  10. Hi Krissy I am Windy! I'll keep you and your hubby in my thoughts and prayers! And sending you lots of hugs. Take care.
    Windy

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  11. Hugs to YOU and John!
    You are always in my thoughts and prayers.
    Kate

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  12. hadonfield786/16/2005 10:32 PM

    My prayers are with you in your time of need. I hope that God finds his way into your hearts at this time and brings comfort.
    I will include your family in our morning prayer circle.

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  13. Hugs coming your way, sweetie!
    Best,
    Judith <-----currently on the Bone Marrow Donor List just waiting to be called.
    http://journals.aol.com/jtuwliens/MirrorMirrorontheWall

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  14. dreamingbrwneyes6/16/2005 10:39 PM

    Including you in my prayers ....

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  15. thinkingoutloud6/16/2005 10:42 PM

    HUGGS & LOVE to you both,
    Niki

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  16. (((((Krissy & John))))) You KNOW I will be here for ANYTHING!!  You two are MY WORLD!!...xox
    http://journals.aol.com/valphish/ValsThoughts

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  17. pixiedustnme6/16/2005 11:13 PM

    You have put into words what I feel so often - don't give me platitudes.  I'll be using that one.  Sometimes you just need the anger to keep you from having a complete break down.  And other times, you just let the complete breakdown wash over you and to heck with the rest of the world.  It's a big hurdle, it's life altering, the isolation alone during the recovering is monumental.  Funny how a few words that you don't understand can change your life forever.

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  18. firestormkids046/16/2005 11:23 PM

    Honey - I love you!  You're in my prayers.  Now and always.  Love, Penny

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  19. well I did cry some Krissy... Im sorry about the news I hope you and John keep your chin up and Im thinking of you today and sending love. xxxxxxxxxx deirdre

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  20. missboogerhead6/16/2005 11:29 PM

    Krissy, I can't even imagine how you are feeling right now!  Know that our thoughts and prayers are with you both.  But when you do want to be cheered up we'll be here!
    <<<HUGS>>>
    ~Miss O

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  21. The unknown~~always a scary thing to face.  Sending you another shoulder to lean on and always here to listen and to pray. We have some powerful prayer groups around here and you and John will be put on them.

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  22. YOURE IN OUR PRAYERS....THERE WAS SOMETHING ON AOL NEWS A FEW WEEKS AGO ABOUT A NEW CURE FOR THAT.....MY WIFE`S A NURSE AND RAN ACROSS IT.......MAYBE YOU CAN FIND SOMETHING ON IT.........GOD BLESS

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  23. Big BIG hugs to you Krissy (and John). This royally sucks. I've seen what a family goes through with a transplant (my friend's daughter needed one). Does John have any siblings? They are the best choice for a close match. I'll be thinking about you guys.

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  24. The Warmest embrace you will find, will come from the soft echoes of your prayers.
      The more of oneself that is put into someone or something else, the more treasured it becomes.  Your prayers..are an extension of you, and are the outreach of your very own soul.
      We are not allowed to know if our prayers will be "answered". God knows us too well, if a prayer of ours would go unaswered....we would probably stop praying!
       This new road of uncertainty, will have you summon energies and powers that you never knew existed within you.....Your prayers will keep the light of these energies, kindled.
       and so I pray.............Marc :)

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  25. courtenaymphelan6/17/2005 12:36 AM

    I hug you and I admire you and I sincerely offer to be a bone marrow donar if you can use O Positive... which is my blood type....I do find barbpinions site as a healing remedy for my hard times...you can contact me about being a donar at courtenaymphelan@aol.com  

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  26. philadlfiagrl6/17/2005 12:43 AM

    so sad to hear
    cancer SUCKS

    Liza

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  27. heathyrxmarie6/17/2005 2:16 AM

    (((((((((Krissy))))))))))  You will be in my thoughts and prayers!
    Hugs,
    xox
    Heather
    http://journals.aol.com/heathyrxmarie/ImNotBroken

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  28. Lifting you and your family up in prayer! (hug) and a hand hold! Brandy

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  29. J land is praying for you all.  Hang in there.

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  30. sarajanesmiles6/17/2005 6:06 AM

    So sad to hear this news Krissy.
    I will pray for John and for you.
    Just wish I could do more.
    (((((((((())))))))))
    (((((((((())))))))))
    (((((((((())))))))))
    (((((((((())))))))))
    We all love you honey.
    Sara   x

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  31. {{{{{{{{{{Hugs}}}}}}}}}}} {{{{{{{{Prayers}}}}}}}}{{{{{{{Thoughts}}}}}}}} Love to you Krissy.
    Sylvia xx

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  32. I'm so sorry Krissy
    My prayers and thoughts
    {{{{{{{{{{{}}}}}}}}}

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  33. Gosh..... (((((((())))))))))))) Huge cyber hugs...Wishing only the best for you and John.

    Su
    xxx

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  34. No platitudes from me Krissy my dear friend.  Just great BIG HUGS which I wish I could deliver in person.  God bless you both xxxxx

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  35. springangel2356/17/2005 7:05 AM

    You have all our hugs from Virginia for John and you too.
    NIH is good...my Mom actually lives next to NIH in Bethesda, Md.
    She uses John's Hopkins in Baltimore too...a VERY GOOD hospital for research...highly recommended!  Hugs, hugs, hugs from my family to yours.
    Joyce

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  36. jules196420016/17/2005 7:37 AM

    so sorry to hear your news, I will be praying extra hard for you both.........Jules x
    http://journals.aol.co.uk/jules19642001/Itsmylife/

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  37. Krissy, I'm so sorry to hear this!! You and hubby are in my thoughts!! Penny

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  38. gabreaelinfo6/17/2005 8:41 AM

    I will add you and your husband to my prayers.

    Take Care,
    Gabreael

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  39. Krissy, just cyber hugs {{{{{}}}} and to let you know I do understand the emotional rollercoaster you are on. Denise xx

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  40. So sorry to hear your bad news. I am thinking of you and your hubby at this sad time. Lots of hugs for you both ((((((((((((((((())))))))))))))))))

    Gem xx

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  41. Lots of ((((((((((((((big hugs))))))))))))) to you Krissy. You and John will be in my thoughts.   Blessings

    Sandra xxxx

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  42. I read about your husbands illness in Val's journal.  Cyberhugs to you both.  Take care.

    God bless
    Mark

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  43. eternallife236/17/2005 9:16 AM

    A BIIIIG hug for you. Sending prayers up right now. *Louise*

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  44. rachealcarol6/17/2005 9:32 AM

    ((((((((((( many hugs ))))))))), it's a shock to take in but wonderful things are happening now with the transplants......hold on to that thought, you're both in the thoughts of many.~xxR

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  45. Oh Krissy, I don't know what to say and so I won't say anything except I am thinking of you and John right here and right now and I can feel waves of compassion and love flowing from my fingertips into the keyboard and on over the cyberlines to you both, and I know as you read this you too will get a burst of hope and energy that you need.  I know that this energy will fill you with whatever it is you need when you need it.  Take a deep breath and draw upon the love and compassion and hopes and wishes that each of the people who responded to your message have obviously sent you in a form of thought energy.  Print out their well wishes and keep them somewhere where you can physically see them when your emotions began to go on a roller coaster ride.  Know that NOW at this very moment everything is really, really okay.  John is there with you and you are with him.  Try to stay in the Moment Now as much as you can.  God is Blessing the both of you all the time and I'll be thinking about you alot too.

    Marlene-PurelyPoetry

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  46. freedxchrist006/17/2005 9:59 AM

    Your loving sister val sent me a prayer request and I am praying for you and yuor family right now may the peace of our lord fill you and yur family. The Lord will be a refuge for the oppressed a refuge in times of trouble psalms 9;9   The Lord is my light and my salvation whom shall I fear? The Lord is the strength of my life of whom shall I be afraid? psalm 27;1  If God is with us who can be against us? Romans 8;31   The Lord redeems the soul of his servents and none of those who trust in him shall be desolate Psalm 14;22  hope these bring comfort you will be in my prayers and I will put you on my prayer list through church God bless kelley

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  47. Here's your cyberhug (((((***)))))    Did you get it???  
    Good luck in your journey.  - Julie -

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  48. UBER PRAYERS!!!!  {{{{{{{{{{{{{{{HUG}}}}}}}}}}}}}}}}}}


    LaShawn

    http://journals.aol.com/lashawn0831/Rantings

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  49. Will keep John in prayer, and you too.
    Barb- http://journals.aol.com/barbpinion/HEYLETSTALK

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  50. quartrlyfecrysis6/17/2005 1:40 PM

    oh doll....
    ***********BIGGEST HUGS***************
    ...and most certainly sending lots of prayers y'alls way.
    Take care and try to take it easy :)
    xoxo~Bernadette

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  51. Oh, Krissy!!! I will keep you both in my thoughts and prayers!

    Carolyn
    http://journals.aol.com/shelt28/MyLife

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  52. Hugs

    Terra

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  53. childebrand19686/17/2005 4:09 PM

    My thoughts and prayers with you and John.  Will respect your wishes, and grieve with you.  I'm sorry for this news....

    Cat

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  54. Wow.I am just blown way. I can't  think of what to say.YOU AND
    JONH REMAIN IN MY PRAYERS................................Kasey

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  55. Visited via Sara's journal............so sorry to hear the bad news ((((((((((big hugs)))))))) to John and yourself.  I really do hope that when he has the transplant it goes well :-)  xx

    http://journals.aol.co.uk/jmoqueen/MyLife/

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  56. I am sorry to hear about your news, my only comment is to trust in God and here is a great big H U G,........................Stormie
    P.S.  I read your sisters journal, that is how I found out about you.

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  57. Krissy,
    You got it....... bunches and bunches of hugs for you and John!!  And, intense prayers too.  Love you, LuAnne

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  58. sonensmilinmon6/17/2005 10:28 PM

    ((((((((((Krissy & John))))))))))))  Just dropped by to give another hug.  Keeping you in my continued thoughts and prayers.

    Monica

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  59. Krissy.. hold on to your faith and know I will be praying for you.  IM me anytime you need a shoulder or prayer ((((((HUGS))))))  The Lord will be with you both threw this time, cling to him.

    Much Love,
    Mary

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  60. Hi,
    ....found out about this through *jouell3935* ..I just want you to know I will be thinking of you and your family.
    Sending my hugs and prayers to you,
    Gem
    http://journals.aol.com/libragem007/JournallyYours

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  61. I'm so sorry!  Maybe this will finally get me into the National Marrow Donor Program (www.marrow.org). I always meant to do it after my friend Shiori got sick, but I never got around to it.  Hang in there! - Karen

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  62. dbaumgartner6/18/2005 6:02 AM

    I am so behind I had no idea you were going through this, honey.  Thanks for letting me know.  I have no words that can take away what's happening to you and John.  All I have to offer is a strong shoulder, a big hug and an ear that is always ready to listen.

    {{{{{Hugs}}}}} My dear friend,

    Deb

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  63. Hugs and more hugs from me to you both - Remember : One day at a time
    'On Ya'  ma

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  64. Krissy.  You are in my thoughts and I am here for you via email and IM if you need to talk.  Will put you both in my prayers too.  I am thankful there is a heaven so that none of these things can ever happen there.   <<<<big lots of hugggggggggssss>>>>>>>>>>

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  65. Lots of hugs {{{{{ Krissy }}}}} I have a friend who received a bone marrow transplant from her sister and now 19 years later she is still doing great. Your best bet would be to find a close relative like a sibling who could donate some bone marrow. I will be praying for you and your family. Lots of love, Verna.

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  66. {{{{{{{{{{{Krissy}}}}}}}}}}}} You dont know me, but I've enjoyed the pictures your photo assignments have led people to post. This lead me to your journal. And now, your sad news. I do hope all of the cyberhugs are helping!
    http://journals.aol.com/astaryth/AdventuresofanEclecticMind

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  67. Oh Krissy! I'm so sorry.  I hope he finds a donor and the transplant takes...all we can do is hope and pray for the best.  You and John are in my thoughts.  ~  www.jerseygirljournal.com

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  68. Sorry to hear this news....I will keep you in prayer.

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  69. {{{{{{{{{{{{{{{Krissy}}}}}}}}}}}}}}}}} {{{{{{{{{{{{{{{John}}}}}}}}}}}}}}}}}}

    Celeste

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  70. (((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))

    Praying for you both!
    angie

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  71. thefaircolleen6/18/2005 7:50 PM

    Krissy,you dont know me but I will offer Johns name up for prayers too.God bless you both.

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  72. Krissy...I'm so sorry I havent stopped by to say hi and give you hugs sooner...things like this really put my own struggles into perspective. *hugs* for oth you and John and I'm really hoping that you'll both get all the good news you deserve.

    Love and huggles, Amy xxxxxx

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  73. dvlwitgrneyes6/18/2005 9:36 PM

    Krissy...Breaking my silence to let you know that I will keep John in my prayers.

    Take care,
    Cheryl

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  74. redonionsauce6/18/2005 9:45 PM

    The advancements of Bone Marrow transplants are so much more improved since my mother had hers in 1969.  She had Luekcemia.  They can do better matches these days.  Put your faith in God and trust him.  I will keep your family in my prayers.  LIZ  

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  75. Keeping you in my prayers and wishing you recovery! God Bless~Sassy

    http://journals.aol.com/sassydee50/SassysEYE

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  76. lindainspokane6/20/2005 1:47 AM

    i am sending u ((((((((((((((((((((((((((((((((((((((((((((((((((((((LOTS OF HUGS AND LOVE))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))...and also i have john and u in my PRAYERS....hopefully just knowing how many friends u have in j-land that care for u and will pray for much help from GOD will help u both in this time in your lives....

    linda
    http://journals.aol.com/lindainspokane/LifewithLinny
    http://journals.aol.com/lindainspokane/LinnysLuciousLickings

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  77. heres a great big cyber hug fo u and john....

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  78. Prayers and ((((((HUGS))))) to you and John. You will both be in my thoughts and on my prayer list. Thanks for sharing this difficult time with us.
    Michael

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  79. My thoughts and prayers are with you and your husband...Sandi

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  80.     I just read your entry on the Carnivaol. You are in my prayers as well. I know what's it's like to have a loved one in a delicate position. Good luck.
    Jude
    http://journals.aol.com/jMoranCoyle/MyWay

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  81. princesssaurora7/19/2005 3:58 PM

    I just arrived from the CarnivAOL and I am sending you lots of prayers...please keep us posted in your journal.

    Be well,

    Dawn

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  82. l1968198819938/15/2005 10:25 PM

    Hi Krissy! I am passing along a cyberhug to you because, I need one too!!!! I am not going to tell you that things will be ok because, you were right when you said, "how do you know?". I am 37 yrs. old and have just found out my mom has this terrible condition. I am so confused & scared. I am strong when I'm with her but, my tears flow when the mind has a chance to think...night-time is a living nightmare!!! The one thing that I've come to realize that is really frustrating me is, everytime I show a tear or begin to "choke up" some as I speak to others, they always come back with, " you gotta be strong...you gotta be strong". I am so getting tired of that because for one, I know I have to be strong for my mom and I am when I'm with her but, why am I not intitled to cry for my MOM when I'm not near her...it's MY time!!! I know people mean well but, this new change in my life was not prepared for and in a way, doesn't feel real yet. Up until this point, I always thought Leukemia was Leukemia...didn't realize all the different types & stages there were. In this past month, I'm trying to come to terms with what is happening to our lives plus, I've been doing so much research on this that, I'm sure I could get a masters in medicine(lol)...had to make one funny in this message. Anyhow Krissy, I won't tell you that things will be ok because, the future in unknown of what it holds but, I will tell you that I hope for nothing but the best for you, John & your families...take care!!!

                                           Lynn

    P.S.  Heer is a cyberhug for you!!!!

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  83. gracewinston8/16/2005 7:19 PM

    My dad has the same thing, he was dxed about a year ago.. He has to get shots every other day for treament. and he is doing well. his #'s are pretty high. I know that soon the time will come when he will need an tranplant but it's a ways away.
    Good luck
    Gracie

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  84. Here's best wishes for your hubby's treatment and a successful bone marrow transplant!  I am registered as a donor and hope someday to be of benefit to someone like him!  Again, my thoughts are with you!  Lisa

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  85. Hi Krissy, I have no idea how I got to your entry yet read it with understanding, I think. I'm new to the Journals & clumsily finding my way around.
    At any rate, I really wanted to send you tons of the cyber hugs you asked for..((())) times a million. In reading others comments one especially struck me as very helpful..live in the 'Moment Now'...Having gone through something similar myself..I found 'Making Memories' very helpful..This may sound silly, yet when a friend suggested collecting something..as a way to get our minds off our troubles..if only for a short time, we decided on thimbles..& I have a collection I call "My Memories". Keeping you & John in my thoughts & prayers...Big {{{hugs}}}..Mar

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  86. You both definitely deserve a cyber hug, prayers, and a lot more.  I'm sending all your way.  Sie  

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  87. Cyber-Hugs...I pray to God that he gets a donor!  No one deserves to suffer like that.
         sincerly,
                    Charles

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  88. {{{{HUGS}}}} & prayers to you both~
    Marie

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  89. I can't imagine how hard it is for you to go through this, and I thank you for having the strength to share it.  

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  90. {{{{{{{HUG}}}}}}}}}

    Carol  

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  91. Hi Krissie,
    Like you i have just found out my husband has Myelodysplasis. He is to old at 57 to have a transplant so it seems we just have to wait for him to die. For how long we haven't asked. Do i want to know or not. Life seems so false at the moment. How do we tell our two beautiful daughters that their father who they absolutely adore is going to die.Like you i just need comfort and to talk but everyone will be so devasted by the news, I don't know who to talk to.
    i hope and pray you find a donor, ironically my husband was a donor a few years ago and it was wonderful to know he had saved someones life but it is now so sad that the same cannot be done for him.
    I have to be grateful I've had 35 years of the most wonderful marriage to this incredible man but we always imagined growing old together so there is never enough time.
    Good luck to you both, you have age on your side and that is promising, Enjoy every moment.
    Stella

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  92. mdsnhemolytic6/06/2008 12:59 PM

    My Dad has been diagnosed with both Myelodysplastic Syndromes (MDS), in which red blood cells fail to mature; and Hemolytic Anemia, in which the body creates antibodies which break down red blood cells. We've been told that the combination of these two conditions is both rare and very unfortunate because the RBC production deficiency is being compounded by the abnormally rapid RBC breakdown in the bloodstream. The resulting symptoms are *extreme* fatigue and weakness (bordering on complete immobility). Do you know of a successful treatment for both of these conditions ? Please don't hesitate to email me at janewebmd@hotmail.com. Any help is greatly appreciated!

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  93. fisherkristina6/06/2008 3:23 PM

    Hi Jane,

    There are treatments to keep MDS at bay for awhile, but ultimately those with MDS I believe will eventually have to have a bone marrow transplant (stem cell transplant).  As far as the Hemolytic Anemia goes, the first line of treatment is usually something called IVIG.  Your hemotologist/oncologist should be able to explain to you what this is.  The next course of action would be chemo.  This would most likely be Rituximab also known as Rituxin.  It is administered about 16 times.  If that doesn't work, the spleen is then taken out, but that usually doesn't have to occur, because often the chemo does work.  The chemo worked for my husband.

    He is now cancer free from two cancers and has no symptoms from hemolytic anemia.  It was a long road but in the end worth it.  Hope that makes sense,

    Krissy

    comment posted and emailed.

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  94. xvivalastarshipx7/09/2008 10:53 PM

    Thank you so much for posting your story. My friends dad was just found out he has myelodysplasia, and I'm scared to death to think he might die. And not get to walk his daughters down the isle on their wedding days and hold his grandchildren one day. But what I'm most scared of is having to talk to my friend about it. How do I tell her everything will be ok? when it might not be.

    Your story has given me faith that he can fight it and get better and get to be in my friends life for long time.

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