I had all intentions of trying to write a blog entry that did not sound so unorganized--- but as soon as I sat down to type it all hell started to brake loose--- and my mind has been going in overdrive ever since! So... it will be another entry that is all over the place but I guess that is the life we have been living so I should just get used to it!! :)

I will start with Saturday..... it was a great day all around AT the walk--- The Go Grier Go Team did an awesome job raising money for research--- The show of support at the park and in spirit was felt--- and the sea of RED shirts could not have been missed!! We are very lucky to have such a great team--- All the teams raised over $77,000 for CURESEARCH so they can continue research and provide clinical trials so a cure can be found-- Our team raised over $12,000-- very impressive!! Certainly the most touching part of the day was the release of the balloons to remember those we lost to cancer--- last year I was busier with the walk and was up on stage when they were released and this year I was sitting beside a friend and watched those balloons (way too many) fly away ~ It hit me a little harder this year-- maybe because I have known so many~maybe because the damn "R" word is fresh in my mind- When I think about my favorite part of the day I just can't think of one moment--- I love when the kids get their medals-- Grier still asks "WHY do I get a medal?" and when I tell him because he is brave and tough at all the doctor's visits he says OK.... He does not know life any different.... I also loved when the young girl 20 something?? said her name and then said she had been cancer free for 17 years-- I do not hear that story enough... and it was nice to hear after watching all those balloons fly away--- I also loved watching Grier walk 3 laps around the lake--- chatting the whole way with his teachers like he had been in their class all year--- If it were not for the bald head you would not have known he just had major surgery and 2 rounds of high dose chemo 2 months ago-- Saturday was a good day--- and Grier and all of us thank you for helping !!

Today was another Monday for Hayes and Grace but for Grier it was his first day at school-- Yes, you read that right.... Last week, while we were in NYC he got the OK to go to school--- I told him on Sunday and he was ready to go--- he even told me he would do carpool in the morning--- I told him I would like to walk him in the first day--- and he allowed it!! But he was going to do carpool in the afternoon-- I was not worried about him at all-- it is actually a nice feeling to have a such great school-! He had a great day.... he loved music... he loved playing on the playground and he talked about his day and friends all afternoon-- he can not wait to go back in the morning and be dropped off at carpool!! While Grier was at school I was going to type a blog entry and then the phone rang-- I have a love/hate thing with caller ID--- honestly I hate to see MSKCC show up-- because it makes my heart drop.... and this morning was no different-- I was not expecting bad news but I think I was feeling very normal after taking Grier to school and that was a quick reality check~ When I answered I heard the familiar voice of Dr. Kushner's assistant -- she asked if I had a minute... which was a new question from her and I said yes-- then Dr. K was on the line. This was a first-- I usually get quick emails but no phone calls-- so I sat down to listen... I will cut to the point but he wanted to know if Grier could come to NYC this Wednesday for Radiation set-up-- they make a mold of his body and tattoo him ( yes.. real tattoos not a sharpie) ~ I was thrown a little because I had not heard the tests results or the plan and I was thinking at the earliest we would go to NYC on Sunday night to start 3F8 ( antibody treatment)-- so, after I asked him a ton of questions I said I guess we can come--- well-- that started the day of trying to book a flight etc.... and then I get the call that it may not be approved by insurance etc. etc. So, I was a little frustrated because I can not book air travel without a plan-- and I don't have a jet in my backyard just waiting--- and I am not in NY-- but CAROLINA---(sorry that really was what he wrote in my email) And I really thought we would be home for a week-- My plan was to fly up with Grier on Wednesday-- and fly home on Thursday night or Friday morning-- And if we start antibodies then I would fly back on Sunday-I can hear some of ya'll now-- WHY does she not just stay in NYC---? Well.. I would but when we fly back for antibodies it will be followed with 7 business days of radiation and possibly followed by another week of antibodies-- And I am looking at my calendar and all I see is mid NOV--- and DEC in NYC-- probably some people's dream but not mine and not Grier's-- we like to be in CAROLINA-- :) So, it is Monday night and after a DAY of schedule changes I know nothing new-- maybe tomorrow we will find out if we fly to NYC on Wednesday-- this is the stuff that drives me crazy! And trust me this is the abbreviated version of the phone calls that went on during the time Grier was in school and this afternoon-- There is one good thing going right now-- IF they get us on the schedule for Thursday we have a corporate angel flight to go up to NYC--- We also have a flight for Sunday morning--- but it all depends on them-- and after all these months I still have a hard time not being able to have some control of this situation!

As you can see we are still rolling with this new normal-- maybe the next entry will have a plan -- who knows... all I know is Grier is going to TK tomorrow and I will hope for a less chaotic morning and some answers to where we will be this week and next and Thanksgiving-