Transplant Day +99

Tomorrow, on day + 100, Phoenix will have surgery to remove her central line. To her, it means freedom…a giant step toward a normal life…without the constant reminder that she is recovering from something.  To me, it is a beautiful mile-marker that tells me I can proceed down the road of hope.  I know this means that her medical team believes that she has progressed enough in her treatment  that she will no longer need transfusions, nor IV medication, nor IV fluids and nutrition.  They will not need to see a complete blood work-up or chemistries from a lab every week to know she is doing well.  They are not concerned that her kidneys or liver will stop working in between clinic visits.  So, yes, the line removal is a real.big.deal.

What the people want to know is…now what?

Phoenix is not done with her treatment.  Although she is on her way, her body has not fully recovered.  She is still taking drugs to suppress her immune system in order to prevent graft vs. host complications.  Of course this keeps her at a higher risk of getting illnesses from other people, places, and things…so she is still not able to go to school, physical therapy, girl scouts, or go swimming.  These restrictions will be lifted over time, but closer to days +200 and +300.  She is able to play outside and eat at some restaurants and visit family.  She will continue to be seen at Riley Hospital on a regular basis and her doctors will continue to watch her blood cells… and routinely check for leukemia and to make sure she is 100% donor.

As for the leukemia… I can only explain it in this extremely simple way:  Every day that Phoenix does not relapse, she is cancer-free.  There is no magic milestone or day plus whatever, that puts her in the clear.  This does not mean we “wait and see”.  Our family is not waiting…we are living, loving, and moving in a forward motion.  We believe that this stem cell transplant was the answer to our problem.  We have decided to live with the attitude that every day is one day closer to a full recovery.  Each day is a true blessing.

Thank you for praying with us for a full and complete healing. xoxo