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!
9 comments:
Great news......We have been keeping Grier in our prayers as always. Marguerite was missing him while you were in NYC. I know I will run into you soon, but I hope you all have a joyful, relaxing summer with your family. Love, Tracy
Music to my ears. What a wonderful celebration to come for his birthday. I hold you all in my thoughts and prayers daily.
Netha and all.
What wonderful news. We hope Grier has a wonderful birthday and that you all have a great summer. We hope to see you soon. Nancy Williams and Roger Dahnert.
Hooray! So happy for you all! Grier is a Super Hero and so is his family! Prayers answered once again! So happy you get to enjoy some normal end of the year activities. We continue to pray for many more days like yesterday!
Have a fun summer filled with NORMAL chaos!
Stephanie G.
I am so happy for all of you. Cannot wait to see the Superhero in action. You are right he is truely a superhero living in a superhero family.
Love to all of you,
Mary Ellen
This just makes me so so so happy. Thank goodness. Oh I'm so glad for Grier and for you and the rest of your family. I love you Christenburys! God Bless (as he surely has! No NB!)
-Julie
WhooHoo! I'm so glad you got good news! Enjoy your summer!
Alice Arwood
Everytime I see the superhero in carpool I know the joy of miracles and continuous prayers. I love you Christenbury Family!!!
Kim Harden
Amy,
There isn't a day that goes by that I don't think of you and lift up a prayer for Grier and your family. I feel connected to you since my 22 year old niece, Anna, was diagnosed with leukemia a few weeks ago. She has endured 3 chemo treatments, and is facing 2 more. I am thrilled about Grier's test results. Miracles do happen.
I heard that Grace willl not be back Elizabeth next year. I certainly understand, but will miss her terribly. Hayes and Grace have been joys.
Kay Daughtry
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