The best laid plans

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The days have been amazingly busy.  Little chance to get near a computer, and by days end we are just ready to  crawl into bed and have a good night’s  sleep.

Our grandson is holding his own, blood levels being maintained at reasonable threshold with transfusions as required.   You would never for moment know by looking at him how very I’ll he is. He’s still pale, but has so much more colour than he did a week ago.

On Monday we will find out if one of his siblings is a match to be a bone marrow donor.   There is one more test to come back to rule genetics out or in as cause for  the a plastic anemia. All viral tests have come back negative.

If there is a sibling match for donor then the process starts to prepare for the transplant.  If there is no sibling match they will start an immunosuppresant drug regime , the idea basically being that the immune system is probably attacking the bone marrow and to try to stop that.   The results aren’t too exciting, and not infrequently the next step is a bone marrow transplant  from an unrelated donor.

We’re  praying there is a sibling match!

Yesterday and today we went in  to Dayton house hunting.  We head in after the doctors have made rounds.  This is a good time to try to find a house because everything is under control right now , and our son is here to happily drive hus sister from house to house house.

No luck yet 😔

Our son-in-law and the rest of the family head here tomorrow from Nebraska.  They will arrive on Monday.

Our daughter’s name is on the Ronald MacDonald house waiting list.  It takes about 14 to 16 days to get in.  I have a new found appreciation for these places!  What a necessary service they provide in the midst of so much heartache and confusion.

Anyway, we’ll  see what Monday brings.  Not sure yet how long we’ll  be here.  We are supposed to heading  for Ireland early July with our two 18-year-old granddaughters , one the older sister of our sick grandson.

Everything is up in the air.  The most important thing right now our grandson .  The best laid plans of mice and men….

Keep the prayers going.   They are being heard and answered in countless small ways.

Sylvua

 

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2 Responses to The best laid plans

  1. Jean-Louis says:

    Dearest Sylvia,

    Thinking of you and your family as you go through this ordeal. I so hope there is a sibling match, so your grandson can get a bone marrow transplant and get his little system kick-started!
    May the healthcare staff continue to provide excellent care to your grandson and to all his family!
    Hugs, Jean-Louis

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