Day -10 (1st day of Chemo) 5-7-12.

Hello Everyone,

We had a wonderful weekend prior our BMT journey and I will write about it soon but I just wanted to let everyone know how it is going so far.

We came to the Kohls house yesterday and we got really lucky because 4 familes had checked out (it houses 8 families) over the weekend. So we were able to get one of the larger rooms (about the size of a dorm room) and have the entire 2nd floor sitting area to ourselves.  But most importantly, we were able to roll the TV from that room to our room and connect the X-box to it.  This one thing has made the entire process bearable for Connor b/c he has the whole lego star wars game to conquer.  So far, we have only met one other family in passing, but i think their infant son (2 weeks) is going thru BMT.  How devastating is that?

Connor started his day very very early today -7am! As most of you know, we are not morning people but he was very cooperative and generally in a good mood-for 7am!  We started the day by inserting his PICC line where 2 tubes are inserted in his right arm and has a line leading to a large vessel near his heart.  This is where they will draw all of his labs and where his chemo will be admitted.  So we told him that he would fall asleep within 10 seconds of getting his meds - he made a bet with Steve that even though he was getting sedated that he wouldn't fall asleep for at least 2 minute of getting his drugs.  Then they went thru a whole negotiation process and it was settled at $50.  He won - he didn't sleep at all and was talking about star wars the entire 30 minutes of his procedure.  The nurses said that they will give him an anti-anxiety medicine and another drug where he wouldn't remember anything but the first words out of his mouth were about his bet! The nurses don't know my son - he never forgets a bet :)  On a side note, he got me to bet him $2000 (it started out with $100 and then he worked it up to $2000 over the course of 2 days)  that he would not cry during this entire process, so far he is winning :) I hope he can win that bet, it will be the best $2000 I ever spent.  And he is saving up for a "real" Light Sabre.

He is a little bit bothered by the PICC line- doesn't like having it hanging out of his skin, doesn't like it bandaged and it generally seems to be hurting him a bit.  He complains a little bit about it and then it is usually followed with a request for candy.  Very clever...but it's going to be sad because in a little bit even candy won't make him feel better. So we are letting him eat whatever he wants while he still has an appetite.

He had his first round of Fludarabine - the first of his 3 chemo drugs.  it was administered over 3 hours and during that time he asked at least 6 times when we could go home. It is heartbreaking to tell him that we will be here a little bit longer.  But so far no side effects yet- Thank God. 

We go in for a 2 different drugs tomorrow, the same Fludarabine and add Bulsufan.  The nurses warned us that it is going to be VERY LONG and difficult day. They are going to test his body for his tolerance to bulsufan and then he will get 3 rounds of that over the weekend.  From my research, the bulsufan seems to be the most toxic of the 3 drugs and we are very nervous about it. 

Thank you everyone for all of your friendship and support. Connor has felt so loved and special over the weekend and I know that he is being especially brave due to your encouragement- and the $2k- Of course!

Personally, Yesterday was very difficult.  I had managed to stay so busy the week prior to today that I really didn't have a moment's time to dwell about it.  But yesterday, I just got really nervous, jittery, scared and teary eyed for no reason.  The anticipation of the process was so overwhelming.  But I am much better today now that it is over. And now the worry about tomorrow begins.  I really need to learn how to knit or something to keep my mind busy.

I am still learning this blog thing but I have tons of great pictures from our weekend that I will try to post.  We have so many people to thank and acknowledge. Please feel free to pass this blog to your friends.

Thanks everyone- we love and miss you all!

The Lim Family