Sweet freedom!

On Saturday night, after 32 days in the hospital, Jessie was discharged.  I would have written about it that night, but Jessie had a low fever and I was worried that we were going to be back in by Sunday morning.  By the time Jessie had her first clinic appointment on Sunday afternoon, the fever was gone.  

By the numbers:  Jessie was discharged on Day 24 since her transplant.  Her neutrophils were 440 (the docs normally prefer to wait until they are 500, but they have been heading in the right direction so they were comfortable sending her out).  Today her neutrophils were up to 820.  34 is the number of pills that Jessie has to take every day, although if you include the “as needed” pills it’s probably closer to 40.  She only has to get one shot a day.  1500 mL is the amount of intravenous fluids filled with potassium and magnesium she is getting per day.  6 is the number of hours Jessie gets to carry around the small backpack that carries her intravenous fluids.  

Life on the outside… before we get to this it is good to remind ourselves that a month ago they gave Jessie enough chemotherapy and radiation to kill her entire immune system.  I often have to remind Jessie of this too.  The reason I bring it up is that I don’t want to give anyone the impression that Jessie was doing cartwheels on the way home.  She is very tired and fatigued.  This is the norm and will likely be the norm for several months.  There will be good days and bad days along the way and this is to be expected.  I can’t say for sure, but I think the fatigue is the hardest thing for her right now.  She still has the rash and still a bit of nausea, but otherwise is doing ok.  Oh, I forgot, she has rhino virus, better known as the common cold.  It’s not threatening, but when you barely have an immune system to begin with, coupled with the fact that you are loaded up on immunosuppressant pills, it means it isn’t going away any time soon. 

For the next few weeks Jessie’s days will consist of a daily trip to the clinic for a blood draw with a smattering of transfusions and other appointments here and there.  For example, tomorrow she has a blood draw at 10:30, an appointment with the nutrionist at 11, and I’m going to bet that by the time that appointment  is done she will get a call that her blood work shows she needs a platelet transfusion.   And when Jessie isn’t at the clinic, I will be forcing pills on her and/or hooking or unhooking her up to her backpack full of intravenous goodies.