Day + 37

Sorry for not writing sooner.  This past week has been quite frustrating for Seth.  The doctors have been revising his meds and finally we think that they have come up with the correct formula to combat the GVHD that is so pervasive.  That being said, now here comes the “punch in the gut” for the week.  Wednesday night we noticed that his upper arm was quite swollen.  This does not appear to be a manifestation of GVHD so it was decided that an ultra-sound should be done to find out the cause.  Thursday we get the report that Seth has a clot in his arm.  It does not totally block the vein.  While it is a concern, the team feels that as Seth starts to get his strength back and move around, this will take care of itself on its own.  The doctors do not want to add any more medication to his system. In the mean time they are monitoring him very carefully.   This has only added to Seth’s list of things that have to get better before he can get out of the hospital.  As he said to me this evening, what ever happened to the 30 days that were the game plan for the transplant?  He knows that it will take however long it is necessary to get through this but he is determined to do it.

We are always grateful for your love and support.

Mom

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6 Responses

  1. Hi Seth and Karen,
    I was anxiously waiting for this update and was concerned since you hadn’t written sooner that something else was probably added to the mix. I
    think I know your frustrations, with these unexpected happenings, the length of time it is taking to see some positive changes and having had nothing go as anticipated from the get go, you have my admiration for keeping your sanity and patience. Know that I am in there with you, for however long it will take.
    Best regards to all,
    love, hope and courage,
    gail

  2. My thoughts are with you even though I do not know you. I feel guilty that I had a much easier post BMT than you.

  3. Dear Seth and Karen, So sorry to hear about new problem. This must be so frustrating and depressing. I can’t imagine how you’re managing to cope, but I guess there is really no choice. Just know we’re all hoping and praying things will start improving at a more rapid pace. Love and Kisses, Ronnie

  4. Karen and Seth,

    So sorry to hear the road continues to be a rocky one. I wish you could just fast forward through all this pain and “punches in the gut.”

    Like you, we all thought the key would be the magic number of “past 30 days.” How ever many days it does take, your courage and fight continue to amaze us. We are all behind you, walking this rocky road with you “virtually” and “spiritually.”

    Love,
    Amy

  5. Hi Karen, Seth, et al –

    I want back and reviewed the months and months of posts, waiting, uncertainty, etc., and I too must give you both a huge amount of credit for your patience and tenacity, though I suppose you don’t have much choice, as someone else pointed out. Must be cold comfort as the days go into weeks.

    I don’t have any good advice, but know at least that I’m thinking of you both and hope and pray that things will get easier and soon.

  6. Hello Seth (and Seth’s Mom)

    My name is Magdalena and my very dear friend Gahlit Eshett has recently been diagnosed with AML (M5). She is 40 and the mother of a beautiful one year old baby.

    She has already had two rounds of chemo and is currently in the hospital with a fever (she’s neutropenic). She is trying to form networks with others that have this disease and I stumbled onto your page. She is having a tough time finding out how to reach you directly via email, thus, if you have the strength or desire, please email my friend as she has a long tough road ahead of her and I though you most likely have words of insight and wisdom that you can share with her. On a separate note, I spent some time today reading your blogs and between crying and smiling, I was reminded again of the blessing of health and life. I am glad that you appear to have a strong support system and family and friends that love you. I am a stranger, but will include you in my prayers tonight. My Best,

    Magdalena

    Gahlit Eshett-Gahlit@yahoo.com

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