Wednesday 12 June 2013

MRI update!

Taylor was in the hospital just a couple days over Mother's Day weekend.  She neve had any complications.  Her counts went down to 280 or something, I can't remember; but they sent us home anyway since everything else seemed well.  She was not able to go anywhere or have any one over though over the whole next week until she was back in clinic to have her counts checked again.  She had to miss her best friends bday party and a couple other things, but she was "healthy" and got over the whole low count episode, so it is ok in the long run.

She has not had fever or been to the ER since that trip!!!  That is so exciting!  That is the longest she has gone without a trip there.  She has been doing really well.  Counts have been great, energy good, eating okay, etc.  She has been having the sleeping problems again though.  I am really bummed about that.  It is hard to hear your little girl crying and screaming in the middle of the night for no apparent reason and there is nothing you can do about it.  You want to be able to help or fix it, but really its like we have no idea what to do.  She sleeps in our room half the time just to be closer to her and to keep her from waking up the other girls.  Her feedings seem to be going well.  Her leg pain still has not come back!  Her voice is still going strong!  Her weight has still been going up!

Monday she had her follow up MRI.  It went really well.  We were in the morning so we didn't have to wait much and were in and out pretty fast.  Today in clinic we got to find out the results.  It was great news!  Her tumor has shrunken!!!  That is not expected.  Remember, in this treatment the goal is to keep it from growing and causing more problems.  So in less than 5 months, it has shrunken in width by about 2mm!!!  That is so awesome!  It is nice to see this stupid chemo is working!

Her counts have been slowly going down over the past few weeks of treatment.  Today was dose 3 of this 4wk cycle and she is at 590.  This is almost low enough for hospital admittance.  So please pray with us that no fever or sickness comes over the next week or 2.  We had to wait around an extra 1.5 hrs as they rechecked the counts to make sure she was over 500 so she could get her chemo today.  Finally, they came and got her started.  I am so glad we don't have to altar our schedule again.

Next week Make a Wish is throwing Taylor a wish reveal party!  We are so excited to see her find out about her trip.  We are scheduled to take it in a couple weeks.  So again, pray she stays healthy and everything goes well.  It will be great to have a nice vacation with the kids, we haven't really had a good one in like ever.

My sister comes to stay with us next week to help out.  I am really looking fwd to that.  Summer is in full swing around here and it is nice to have some stress gone for a while.  Schooling adds a lot of stress around here.  This is a very welcome break for me.  Anyway, better go... gotta get a kid from camp.  Update more when I can.