June 6

Another disappointing day.  Her WBC count is still low.  She was not able to start Long Term Maintenance today... again.  


Hem  33.1    Plat  230    WBC  1.5    ANC  298


Her ANC needed to be 750.  Not even close.  She still has the rash, but the Parvo virus test came back negative.  The rash looks more like hives now.  The doctors think she has a virus of some sort (there are lots of different kinds "running around" out there) and it doesn't seem important at this point to distinguish which one.  It just has to run it's course; but because her immune system is depressed it is going to take her longer to rebound.  


So we wait.  Not so patiently.  


We are anxious about our trip to Switzerland, but also just for the mental closure. Long Term Maintenance is still involved therapy and we expect inpatient stays from time to time.  It includes one type of chemotherapy being given orally everyday, another kind weekly, steroids 5 days a month and an IV push of a third type of chemo monthly.  Plus she will receive chemotherapy via spinal tap every three months.  BUT it will mark an end to front line therapy.  Front Line Therapy - as defined by us - is the really hard, crappy, anxiety ridden stage of Acute Lymphoblastic Leukemia.  I.E. the last six months of our lives.  Long Term Maintenance represents a return to a somewhat normal life.


We will give it another try this Monday, June 13.  Wish MJ luck in fighting off this little virus and getting that ANC 450 points higher!!!  


Madelyn usually watches a TV show while we are talking with the doctor.  We used to think she wasn't listening, but lately we've discovered she is just being selective. She will ignore us when we tell her to put her shoes on or respond to a question, but later on she will repeat what was said or ask us to define a word we were using  Today she was NPO (meaning she wasn't able to eat until after her sedation).  When the doctor came in and told us her counts were still too low, she immediately pipped up, in in the middle of Dora, "I can eat then, right Mommy?"  We all started laughing.  Out came the snacks!


In other fun news, from Madelyn's world, she had a wonderful week.  Despite this little virus she is feeling absolutely fantastic.  Running, laughing, playing, being silly, splashing in the swimming pool....  She was able to be with Ashley (I was able to go to the studio!!!!!), we had a sleep over with Alaina and Keira (her best buds), a BBQ with the Fowler/Dawson's, beach time and hanging out with all the grandparents.  


She is such a capable little five year old.  She is still five, with allllll that that involves, but she has moments of such maturity it takes us by surprise.  When we pulled up to the apartment yesterday Sophia said "no like apartment, want home."  And Madelyn said in a maternal tone "it's only for one night Sophia.  I have a pokey tomorrow."  Sophia responded "oh, ok."