Day 17

We went to the hospital early in the morning.  Today is a chemo day (weekly for now).  The routine is first to check blood counts (CBC); after confirming hemoglobin is above 8 and platelets above 20, he will get his two chemo medicines through his port.  To access his port, a pretty big needle(so big that Jianwei always looks away) is inserted through his skin to his port at his chest area.  To ease the pain (the pain is actually minimum since only the top layer of skin is there to be poked) and nervousness, a topical numbing cream is applied 30 minutes beforehand, and that can be done at home by parents to save the wait time at the clinic.

Lucas's hemoglobin is 9.1 and platelets 29.  So he got his chemo and came home after 5 hours in the clinic -- right, even an un-complicated no-blood-transfusion-involved chemo takes 5 hours.   Everybody was doing their job efficiently at the clinic, but there are simply more patients than medical staff.

I asked the nurse why his platelets kept dropping more so than his hemoglobin.  The answer is that platelets is more sensitive to chemo than the red blood cells.  So it's almost certain that Lucas needs a platelet transfusion before next chemo on next Monday.  We are scheduled to go to the clinic again this Friday to get CBC and most likely get the transfusion to stay safe and to get ready for next Monday.

Lucas did cry when doctors and nurses "messed" with him, but he was pleasant otherwise at the clinic.   He was very attentive while we read him stories, then he watched daddy coloring and played with some toys,  then watched some PBS cartoons on TV before we let him play coloring on iPad.  There is this lady named Cindy from "Child Life" that goes around and her job is to distract kids while their ports are being accessed.  I cried watching how dedicated she was with Lucas.   It's such a big relief since we tired parents are actually not very good at distracting kids at the clinic.  Both Jianwei and I went this time, but think how much help it would be if only one parent is with the kid.  She was so cheerful that we really hope to see her every time we go there.

Lucas came home and ate a big meal (well, he hasn't had one good BM yet, but diarrhea did subdue. So we still have him on restricted diet).  He is still napping now and Alex just got up from his 4-hour nap.  Alex went to a friend's house yesterday afternoon and skipped yesterday's nap.   We had planned to have Alex back before dinner but he invited himself to dinner at the friend's house.  :)  He didn't want to come back after dinner either!  I asked him why he didn't want to come back home after the friend finally managed to drop him off.   He said he forgot about mommy while he was playing with his friend!!!  I felt disappointed... but I guess I always tried to stay at my friends' house as long as possible when I was little and my dad would come to look for me with disappointment on his face (but I was in grade school then and I had homework to do).  I really need to find ways to stay in Alex's life so he won't forget about me when he is having fun!  It's a little tough to let Alex feel fun at our house right now, but we will try.

We continue to receive gifts and help from our dear friends and neighbors.  We got the cutest card from our neighbor Chris and Chuck -- Thank you!  And big thanks to the teen boys who have been helping us clear the snow for us!  I'm having a good stock of unopened toys in the basement now as I finally convinced Alex that we will slow down the pace of opening new toys.  And to those of you who have been very creative in giving us money that we can't reject, we owe you a big one now!  But seriously, your good wish and encouragement is all we need.   Leave comments here or send us emails.   Physical cards are always welcome as Lucas can collect them as the time goes.  Thank you so much for keeping us in your thoughts and reaching out to staying in our lives!  We will remember your kindness and teach it to our boys so they will grow up to be kind people like all of you.

And to myself -- be more patient with Alex... he is a chatter box but he means no harm... he is only 4 and he is already doing exceptionally well with the situation...