As I stare at my suitcase I have not unpacked and the toiletry bag that I live out of, I remember I have not updated about our trip to CHOP last week. It was a really quick trip but loaded with lots of information, so much so my head is still spinning. Jeff's dad drove us to Greensboro late Tuesday afternoon .. Our corporate Angel Flight was not until 6:35. We landed in Philly later than expected.. But we had a nice easy flight. A "red" cab drove us to our hotel ... Grier thinks the cab was red because the Phillies are red! We checked in the hotel and walked out to go find some dinner and explore the neighborhood. We ended up eating outside at The White Dog cafe.. It was recommended to us by several people so we decided to give it a try. Grier's first observation of Philly was that it was so quiet.. He said, Where is everyone?" After dinner we walked back through the university of Penn and settled down for the night. Wednesday was busy.. And we woke up to rain which was going to make our planned walk a little tricky... We ended up having breakfast at the hotel... I didn't see they had room service do we went to the area where they had continental style... I don't think it phased him... He did have a flat screen :) Our Appt. was not until 12:15.. So we packed up and decided to leave our bags at the front desk so we did not have to take them to the hospital with us. The funnies comment from Grier was ..mom, are you going to leave the beds like this? He is so used to me CLEANING and BOXING up sheets .... And I said, YES with a smile on my face -we walked around university city area and saw the first Ronald McDonald House ever built and more of the Univ. Of Penn... We stopped for lunch at a cheese steak place called Abner's.. Grier had his first and I think I need to get them to make it with cheese wiz next time.
The day went fast.. And before we knew it we needed go pull out the map and walk towards CHOP.
My first impression is that it is ginormous! We had to do all. The insurance stuff and fill out many forms... And then we waited... We first met someone that did Grier's blood pressure, height and weight. Then we went back to thewaiting area. The next person was from the NB team.. She was a fellow and wanted to go over his 4 year history.. After a little more waiting we finally met Dr. Mosse. She was very attentive and gave her ideas for Grier in regards to what she thinks we should do. We actually found out we had more choices than just MIBG therapy. CHOP has 2 trials that Grier should qualify for. He will need to repeat scans again at CHOP because we were just at the 15 day mark from the scans we did in NYC in April.
We should find out this week when those have been scheduled so we can get started on the Aurora A Kinase Inhibitor phase 2 study. The purpose of this drug that is given by mouth for 5 days is to stop tumor growth. We don't know if it will work on Grier but we are going for it.  It does not come without side effects... his blood counts will be effected and he will probably need platelets - there is a list of other possible scary side effects as well... I think we will start with this.. as the doctors have said.. he has had a lot of chemo.. and it will stop working or cause more damage than good. I think this is a good time to try other things.. and we always have the "wicked chemo" to use but for now it will be on the shelf!  After we found out the options we had we ran out of the hospital and caught a cab... Stop quickly at the hotel for our suitcase and headed to the airport. We just made our flight home... Security line was crazy... And we ran all the way to the gate.. Even slipping in vomit right before boarding. Very gross!!!
We landed in Charlotte around 7:30. Got everyone ready for the next day and then continued with our busy week...


This weekend was one to remember. There were 2 bake sales going on... One was organized my neighbor, Melissa and Grier's preschool teachers he had at First Pres. They had an awesome sale and have raised over $2700 for pediatric cancer research...this will be matched by the Glad Co.-- a huge thank you to all that helped and gave up their Saturday to hang out and work the bake sale table. After I left that bake sale, I went to the Strawberry
Festival in Fort Mill to check out the second bake sale that was in the 2nd day..Kerri, Austen, Tracy, and the rest of their crew did an awesome job for over 15 hours.. They were very successful to and their total is over $4,000- before the match from Glad.


A huge thanks goes to the organizers and everyone that baked and attended the bake sales...you all are good cookies in my eyes.


more to come later as I find out the details...
AVC