A quick update--
Today we woke up very early... 7am -- I know some of you were off to school and work by then... but we did not get to bed until midnight.... so it was early for us.  Grier had a vomiting episode last night and spiked a fever.. so they gave him Tylenol and he could not keep it down.  After the second try it stayed down and he was fast asleep---

This morning he woke up thirsty and he took some sips of a capri sun and could not keep that down... I was getting a little worried because I thought that he was getting better.  We also found out that he needed a blood and platelet transfusion.  His platelets had dropped really low overnight.... from 33 to 8!!! When we started ICE they were almost 300.... anything less than 20 requires a transfusion.  His hemoglobin also was very low--- 7.2 so it also required a transfusion.... thank goodness for blood donors... they really do save lives!

Most of the day he was quiet and in and out of sleep... after his transfusion he looked like he was going to get up and play but it was a tease... he did play with his new car toy... and actually called a friend from school... We also had some great visitors ... and only once did he get sick while they were in the room... It seemed that every time he took a sip it was almost an immediate reaction to vomit... so he kept saying he did not want to drink.  I think I would be the same way after 13 days...

Yesterday I did ask them to put Grier on TPN-- it is Total Patient Nutrition.  He had lost almost 5 pounds ( he is at 35#).... and I did not see the end in sight... so he is hooked up to TPN and it supplies him with the calories he needs for the day... The plan is not to come home on this... I just thought it would be a good idea while he recovers from ICE.

By the afternoon the vomiting had picked up a little... and I had some NYC help ( Gretchen and one of the Nurse Practitioners)... I was back and forth talking to them about what we could try to give him some relief.... And after relaying messages... I am not sure LCH is comfortable with what MSKCC uses... I am still working on it... and I hope that if it continues they will talk to each other... Obviously we want what is the best for Grier... so at least we are on the same page ..!  The best news I heard from MSKCC was this delayed vomiting is probably related to ICE... and it could last 2 weeks after it was given.  It was suggested today by the doc here we could do an ultrasound to see what is going on... but now I feel like he is just that rare group that is more sensitive to carboplatin.... nasty stuff!!!

That is it--- Have a great Holiday Weekend.... not quite sure how we got to May... especially to Memorial Day... but summer is here... ugh :)  As much as I enjoy the change of pace summer brings... I miss school and the routine...