Philly ~here we come!

I wish I had the time to actually write a post when I am thinking about what I want to say... every time I sit down to write something meaningful it always seems to turn out like an itinerary of an upcoming hospital trip.  I told Grier a few days ago that we were going to Philadelphia.  He asks if we were going back to NYC when he overheard me on the phone making reservations so it was perfect timing.  At first, he asked WHY are we not just going to NYC... and I said we are just going to see what another doctor has to say to us.  He was standing beside me at the time and I was on the Sheraton Website... the hospital suggested that hotel because it is close to CHOP and they have a CHOP rate!  He saw the pictures and said, oh OK... are we staying there? I said, Yes... and he said, "Do they have room service?" Another, Yes .. and he said, Is that a flat screen TV on the wall?  OK.. at this point I am thinking how dysfunctional are we???? He said.. Well, when are we leaving? Then he ran out and began to tell everyone he was going to Philadelphia.

We leave for Philly today... we lucked out and got a flight through corporate angels to Philly... but we have drive to Greensboro to leave.  It seemed worth it at the time...  we have never done this before.  We are going to stay at the University City Sheraton in Philadelphia for one night.... and yes, I will get the little man some room service for breakfast! We have an appointment tomorrow around noon... and then will fly home and be back in Charlotte by 7- Grier is excited... I feel like I did when we left for NYC for the first time in Oct. 2007~not even sure how to describe the feeling.... but I get waves of nauseousness just thinking about the trip!  Jeff is going with us... that was another funny conversation... We told Grier that Jeff was going and he hesitated and said, "Why is mom not going?" I told him I was going to and he then was excited...

School is going well for Grier-- He is happy to be back with his friends and teachers... very happy! I wish we could just keep this normal going until the end of school.  He had one day last week that he was very upset about going and we found out that he was nervous about practicing for "lock downs" & fire drills.... I knew he was very edgy at the hospital the last time we stayed because they had fire drills all day long... with the help of his wonderful teachers... he is feeling better and not so uneasy about the unknown drills they practice!  We have been very lucky with teachers... I could not have asked for any better teachers for Grier... and the bonus is that we still keep in touch with them.  I told someone the other day that I have sent him to school right after bone marrows... after a huge surgery last year and after rounds and rounds of chemo... I don't have to do that... I could keep him home... we actually have a good time together... but I trusted his teachers so much and knew he was in the best hands while he was at school I felt good about letting him go and being normal.

May is finally here... there are going to be bake sales galore around the country... in honor of Liam's 7th birthday... I am so thankful to all friends and Grier's WDS teachers for putting on bake sales this month..I am going to post about all of the upcoming bake sales in our area... but I wanted to say THANKS to those that are already working on them....

Someone sent me that cancer poem about what cancer can not do.... and I have to say... not sure I believe it.... I have read it and can tell you that cancer does do all those things to you... When I was  in NYC last time waiting for the talk with the doctor I was sitting beside another mom and her child and what appeared to be her very good friend.  It reminded me of my visits with my friend, Anne....  The friend was trying so hard to keep this mom's mind off of scans.... and all the what-if's.. They actually met with the doctor right before we went in.... and I passed them as it was our turn in room 6-- I did not know them but I could tell that they did not get good news.... I had been thinking about them a lot... and I saw a picture of a little boy on facebook and recognized him.... well, it was the little boy in the waiting room.  After reading his blog, I knew it was them... I knew the news was just not good... but horrific... ugh.. makes me so angry... and then laster this week another brave family lost their 21 year old to NB... Nick had an attitude that was very usual for the teenage group... he wanted to get on with life... do his treatments... and continue to live... He died of complications from treatment.  I am just saying all this because cancer is different when you are dealing with a child....

I guess I need to go pack for this short trip.... I am cautiously HOPEFUL that we will find a treatment that works and gives us more normal -- not too much to ask...  but nothing new that every parent I know in this club wishes for too!