Weight UP :) Counts DOWN :(

Weight UP :) Counts DOWN :(

Today was supposed to be a quick day at clinic, but it never works out that way.  As the famous Dr. Tolar said weight gain is very positive!! That was so exciting 🙂 of course she celebrated by not drinking or eating until late tonight and then just a little but every little bit counts!  The other good news she is officially on one CSA every other day and if things continue she will be off next week 🙂

The decision was made not to pull her line for at least a couple more weeks as her kidneys just aren’t really happy and the extra fluids can only help her kidneys.  Much better than having to go inpatient for fluids.

It’s funny we have all been so worried about her kidneys and her weight I really didn’t notice her counts dropping so today when the NP came in with the CBC and not the kidney labs I was shocked to say the least.  Today Kimbell needed GCSF for the first time since early October.  Her ANC was down to 800, her hemoglobin continued to decline but half a gram this week, and her platelets continued to decline.  I’m not sure who was more in shock, her, J or I. Needless to say as soon as I got home I started going through all her labs since we got back to TX to make me feel better except that made it worse.  Her counts seemed to peak in October and then down, down, down 🙁  Needless to say off an email went to Dr. Tolar.  I can’t tell you how much we love that man.  He wrote me back in a matter of hours saying if it is a steady decline then we will need to investigate.  So the next thing John asks is “well have you put her counts into a spreadsheet?” hmmmm no honey, I haven’t even cooked dinner yet so tomorrow that is what I will do.  I think what bothers us the most is she doesn’t look good.  Years and years ago a nurse in Cinci said yep she has marrow failure.  I asked why she said that and her response was she has the marrow failure mask.  Over the years it became more and more evident how true that was and within the first 30 days post BMT that mask was gone.  I mean poof gone.  Well that “look” came back last month and it has really been bothering us.  My gut and John’s have been thinking we are missing something and she hasn’t felt well.  She has even brought it up a couple of times lately if BMT was the right thing to do.  Yes without a shadow of a doubt it was the right thing to do.  She most likely wouldn’t be here today without it but for the little girl who said 6 weeks post transplant she had never felt better in her life to now question it is not only sad but kind of scary.  No transplant journey is perfect and ours has been really good so please pray they figure out why her counts are going down so we can figure out what we are missing.  We are scheduled to go to MN on 2/12 and I doubt they will move up her marrow but if that is what is best then please pray that they do!

Thanks for all the prayers.

Love, P, J and K

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John & Paige