10.31.2013 Posted in Uncategorized 1 Comment

Lucy and I made it through the rain this morning to our appointment at The Costas Center. It’s quite a difference experience to walk through the doors of Cardinal Glennon and know that we are coming home the same day! I almost forgot to pack a diaper bag for Lucy, it seems like so long ago that we lived our “normal” life. Soon the Costas Center will be our “home away from home”, so this will be routine.

Today we came in for blood work to check Lucy’s levels. She has been on neupogen for 8 of her prescribed 7 to 10 day regimen to stimulate her bone marrow to produce healthy withe blood cells. Our doctors estimated that Lucy would probably need the full 10 days, so we were pleasantly surprised to find her white blood cells are up to 23! This is quite an amazing increase from 0.3 on Monday. Her ANC is 15,000 which is awesome. It was also pitifully low on Monday at 30. Anything over 1,500 is good for Lucy. This excellent recovery means several things. First, we no longer have to give Lucy neupogen by IV every night. Thank goodness! Ask a baby to be calm and still for 20 minutes in the evening, and baby will choose those 20 minutes to melt down. Second, she is healthy enough for surgery on Monday to put in her Broviac line and start her next phase of treatment. For all those prayers for Lucy to be a responder, thank you! At the beginning of our appointment Dr. B was telling me we would need to come back tomorrow for more labs, and probably re-schedule surgery or push back her next treatment at least, and within minutes the results were in and I was talking to the surgery nurse on the phone about Lucy’s appointment on Monday. I quote Dr. B – Lucy is “a rockstar!” We like these surprises from our one of a kind little lady.

Our visit today has also been extended through most of the afternoon while Lucy gets IVIG (intravenous immune globulin). It is a solution of concentrated antibodies to boost her immune system. After violet’s cold, I say bring it on! We should be home in time for trick or treating with Dr. princess Violet tonight, but since she can’t go along door to door, Lucy donned her costume again today.

Princess Lucy “the responder” catches up on her beauty rest in clinic today


Violet got a dress down day at school for Halloween. There will be a costume change later and Dr. violet will get to march through school in a parade to collect candy for her parents, um, I mean for herself . . .


1 Comment

  1. Doris

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