Good-morning loved ones,

Sharmalia appears to be doing really well (except she is still in bed at 9:15 am and she is usually an early riser.  I am just hoping that she is adjusting for her irresponsible parents who kept her up so late.) 

After last weeks treatments I did notice that she was experiencing some side effects in her walking.  The vincristine causes “foot drop”  which means that her ankles drop and she can’t walk heal to toe.  So, for about three days she walked on her toes.  She had another dose of vincristine (and doxorubicin) this past Wednesday so we will watch to see if it effects her worse this time or not.  If she has significant worsening they will decrease her doses at next weeks visits.  Even though we don’t want to see any side effects we are thankful for a little foot drop in contrast to the paralysis that she experienced in induction. 

We are overall very pleased with the care that we are receiving here.  The flow is much harder on her and me, because we have to move from lobby to lab, back to lobby, to vitals, to doctors room, to infusion, to procedure room, and then they kick you out of recovery and you have to find a place to feed your kid, since they were fasting for hours.  All of this moving around is especially difficult when mom is 8 months pregnant.    San Diego was set up so that you went into one big room, picked your bed for the day and everyone came to you except for the doctor.  That being said I would rather have good quality care instead of convenience. 

The providers here seem to be empowered to make decisions based on the child’s health, response to medications and comfort.  They have made adjustments to her dosages and her schedules several times. They have adjusted for things as critical as her low immunity and things as “minor” as moving her procedure chemo back so that she can get her shots while under anesthesia to avoid the pain and stress of it.  (We asked for this at San Diego when Sharmi had a port correction surgery scheduled the day they gave the shots and they would not do it.  Seattle Children’s makes this adjustment for all of their children as a standard practice.)

Sharmi is one brave kid.  She still has her times when she cries an says, “no doctors,” but she is a trooper.  When we went to the infusion clinic on Wednesday, the nurse walked away and Sharmi said, “where did she go? where are medicines.”  Then she told me that the medicines were for the “baby’s port.”  When the nurse returned with her chemo, Sharmi pulled her tube out from under her shirt and handed it to them.  I was telling Dean this story last night and Sharmi filled in the pieces that I had missed such as when she asked “mommy do it, mommy give medicines.”  And they responded, “no mommy can’t do it.  mommy hold baby so not scared.”  She is quite the talker and she understands and remembers everything!  I know I am biased but I think she is pretty incredible.

Well I started this at 9:15 and now it is 4:30.  I still haven’t taken a shower, I have grocery shopping to do once the baby wakes up and we have our dear friends the Plake’s coming for the weekend.  I better run.  Now that I finally have inter-net again I will try to do more frequent updates.  Have a wonderful weekend and a happy Sabbath.

 Love Cheris