Friday, September 16, 2011

Day 246: No More MMF!

It's been two weeks since our last appointment.  Clara had her Hickman taken out, and we have loved watching her flourish.  With that thing gone, she has only changed the slightest bit in her behaviors as a result - like sleeping on her tummy now without having to tuck her knees underneath her to protect herself from the clamps cutting into her belly.  Really, she doesn't have a clue.  But we would look at her and just FEEL that she was different.  We've loved giving her a bath every night, and she LOVES taking them.  It is always right after dinner and Daddy wipes the majority of dinner off her hands and face while I run the water.  She comes tearing around the corner and immediately starts counting 1, 2, 3...weeeee! in anticipation of being put in.  I have to remind her that we have to take of her clothes and diaper.  She is more than happy to assist by stepping out of her pant legs and pulling her shirt off (recent developments in her abilities). 

Yesterday, we took her into the hospital for her normal labs and check of her skin.  We got lots of GREAT news.

  • Her weight is up from 7.75kg to 7.9.
  • Her length is - longer. Somewhere around 72-75cm.  She hates this part and is quite a squirmer.
  • Her CBC is finally back into the "stellar" category.  Her white count is up from 4.2 to 6.4, and her ANC is up from 1400 to 1900.
We asked the nurse practitioner to give us an updated projection of her treatment through the end of the year as our insurance is changing and at this point in time will not cover her care at Stanford past the end of the year.  We believe there will be new options available by the end of October so aren't panicking yet.  However, I wanted to know what the plans were for her immuno-suppressants and immunizations.  The nurse practitioner said she would have a conversation with the doctors and let me know. Answer:

  • No. More. MMF!
This cuts out an entire month of my anticipated treatment plan for Clara.  In fact, if everything continues the way we think it will, Clara will be done with her immuno-suppressants and all of her other meds the day after the baby is born.  In 10 weeks, we are expecting a baby and a Clara without and NG or meds.  INCREDIBLE!!!

We are planning to go into the hospital for an infusion of IVIG as Clara has remained borderline low for 2 weeks.  The doctors want to move us to having appointments every 3 or 4 weeks and so have decided they might as well just give her an IVIG dose so that they don't have to keep bringing us in weekly to see if it does or doesn't dip below her transfusion threshold.

The Boyle household is awfully happy.  Without MMF, Alan and I even got to go to bed together for the first time in as long as we can remember.  And it was the first time Alan has been to bed before midnight since before she was diagnosed.  Alan's parents have been in town this week, and Clara has thoroughly enjoyed tossing Daddy and I off to the side and playing with her newest favorite play things! :-)

1 comment:

M.K. said...

Oh my, God's timing is absolutely perfect! Cannot believe things are predicted to be done just as little sister arrives. When you found out you were pregnant it 'seemed' like such awful timing and yet, God knows exactly what He is doing. Perfect!

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