One week ago today we ended another grueling round of scans --- Grier bears the physical part of all 5 tests but we have the emotional part. We are very careful to make Grier feel like everyone in the world does this and this is no big deal-- I think he actually believes us. I know this from funny stories people tell me-- he tells them about getting his picture taken in a "doughnut" machine (CT scan) or when he was asked about going on vacation... he quickly said he was going to NYC to live at the Ronald McDonald house!! I always cringe when I hear these stories but I guess it is what it is and it shows he feels like everyone does this sometime in their life!
I think I thought these scans would get easier over time but I am so wrong! We have gone without treatment for almost a year and they seem to get harder. I think one reason is because we have met so many people fighting to keep their kids alive and we read their updates and know that the statistics are right--- not good! Relapse happens for NO reason and is unpredictable-- I always seem to hear about multiple relapses right before Grier's scans and it makes me mentally prepare for the "what-ifs"-- I told someone recently I always leave Charlotte with a PLAN A and a PLAN B!
I hate waiting for tests results and even though we heard preliminary results of the big one ... THE MIBG" before we left last Friday ... I still wait to hear about all 5 before I really exhale! I have gotten better about anticipating the calls early in the week-- I know that a couple of the tests take several days and that does not include weekend days--- so Thursday was my guess this week--I also hate to see the area code 212 come up on caller ID--- so I have learned to email Dr. Kushner--- hitting send is really hard because I want to know but also I would rather NOT! Denial is a good coping skill I have!! This morning I sent the email I always send.... Hi Dr. K--- any news on Grier's work-up? I left and took the kids to school and on my way home I was wondering if he had responded yet-- I was not far from home but I had to know so I checked my email from my phone---- I heard the ding... and I was afraid to look--- knowing all too well it could be someone else!!! Well--- I looked and it was from him and I could see most of his email without opening it--- It said the same thing it said in January-- " NO NEUROBLASTOMA... WONDERFUL! I checked the date to make sure that was from today and then cried--- happy tears! The rest of the day was spent getting ready for PLAN A! We have a birthday party to plan for Grier... & SUMMER PLANS for all of us...! I am so happy I can tell Hayes and Grace that for the first time in 2 years I will be at the end of the year awards at their school!! I am also thrilled that Grier will finish a full year of preschool--- this has not been done since he was in the Toddler Class at Covenant!
Thanks for all the notes and messages sent last week--- they help us get through! A special thanks to Kim Robertson---thanks for always thinking of us during these stressful times!
I will update later-- with pictures of Grier's Super Hero Party--! His choice in the theme but very appropriate! He is a Super Hero!
