Monday, March 10, 2014

Days +198 to +200: Stable, but Suffering

The treatment so far has managed to stabilize Ezra's counts. Hemoglobin and platelets are still low and not improving, but have remained about the same for almost a week now. He received another round of high dose IVIG yesterday and today. However, Ezra is not handling the steroids well.  The steroids have made him crazy and irrational at times. His leg pain has intensified both from his marrow working hard to replace the cells being destroyed and from the steroids. And he is completely exhausted, sleeping for most of the day. The doctors got concerned today over how he's doing, and have decided to drop his steroid dose down to where we started instead of weaning more slowly. They also drew blood cultures to make sure he doesn't have an infection, and started him on antibiotics to be cautious. 

The plan to avoid the drug that kills off his B cells may need to be abandoned. If his counts deteriorate after we drop the steroids then we will have no choice, but to use the drug that will kill off his B cells. And if he has an infection - well, that will be the next nightmare. 

Once again, we have lost our sweet boy to the suffering caused by his treatments. We tried to make his birthday special, but he really could not enjoy it. We feel like we are going through transplant for a third time, watching him suffer and feeling helpless. All we can do is hope that relief will come as we lower the steroids. It can't come soon enough. 


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3 comments:

  1. UnknownMarch 11, 2014 at 1:03 AM

    I can't even imagine how you both handle this and watching your darling Ezra suffer. I pray he gets relief soon and that they can do something to help his leg pain. Thank you for the update! You both are so strong I know there will be something wonderful that will come out of this and that is that Ezra is well . My heart is full every time I read about all of you. I wish Ezra a refuah shelema.

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  2. AnonymousMarch 11, 2014 at 9:56 AM

    We keep looking for your updates hoping for much improvement in Ezra's health and were so upset to hear about all of his pain and all of your suffering. It pains us to no end that all of you have to endure these horrible things...especially both of you being so young and seeing your first born going through these terrible things, especially on his birthday. The good part is that he is so loved by his family and dear friends and is constantly being watched by good. caring doctors, nurses etc. We will continue to pray for all of you that this nightmaire is over as fast as it possible can be.
    Much love,
    Michele and John

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  3. AnonymousMarch 12, 2014 at 10:38 AM

    Thinking of you always.
    The Welling Family

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