Today was the long awaited Roger Day concert at ETES--- I wanted to take Grier since he loves the cd.. DREAM BIG ( this is a great CD if you do not have it!)-- so I hoped we would be here and we were-!!!- Not knowing what his counts are was the only thing holding me back but I decided it could not be worse than going to CMC with low counts :)-- We ended up going to the balcony in the auditorium--! Grier had fun and realized Roger Day was real!! Too funny-- He begged to go sit with Grace in the crowd downstairs so I gave in... as usual! It was too overwhelming down there so he wanted to leave early-- I forget that he has been so isolated for months that a large crowd makes him anxious! The picture is of Grace and her friend, Claire at the concert--- you can see Roger Day in the background if you look very closely--
I have added pictures to the blogs that were written while in the hospital--
I am trying to take pictures more often because it shows how well he looks! He is getting hair back. I am trying to get a good picture of his eyes-- the new lashes make him look like he has eye liner on! I also added some of Hayes and Grace-- they do not get talked about too much but they are doing good-- They are registered at SuperSibs--- I have had a lot of questions about that-- Grace got a letter from Mia Hamm as did Hayes but Grace thought that was the best!
We go to clinic today-- hopefully just for a weight check and other check up-- They will check his counts so we will know if he needs any blood products. I hope not since our appt. is late afternoon- Grier has already asked if he is going to sleep there?
6 comments:
Amy,
Sounds like life is pretty good these days...FANTASTIC!! Glad everyone enjoyed the concert...now Grier has a face to match the name Roger Day...awesome. We're looking forward to the concert at FP later this month.
Hayes and Grace are in fact "Super Sibs!" I did get to log on the website yesterday and am thankful that you have a place to get good information and support.
Hope all goes well today at the clinic and that Grier's counts remain favorable. By the jumps I witnessed yesterday, whatever you're doing is working quite nicely:) Could be the fuzz in the new Crocs...love them!
Have a great weekend! As always, call if you need me:)
Lots of Love & Many, Many Prayers!
Dina
Hi! My name is Lynne Perry. I live on Sterling, almost in your back yard. I heard about Grier from a neighbor. I check up via the website frequently. I wanted you to know that I have been praying for you and thinking about you almost everyday. I hope to bring food one day. You must have a ton of friends because they haven't needed me yet. I didn't know whether I should write or not, but I wanted you to know that you have prayers out there even from people you don't know.
Susan Leary says,
So glad Grier got to rock out to Roger Day! There is no doubt in my mind that Hayes and Grace ARE super sibs!! Hugs to all!
What great pictures. Three beautiful children.
We are thinking of you as always and praying harder than ever that you hear from N.Y.C. very soon.
With lots of love,
The Paine's
Amy & Jeff,
So happy to hear about your fun day today!! I am so glad you, Grace, & Grier were all able to enjoy the concert together. I am so glad Grier was feeling up to it! Loved all the photos you added- Grier looks so good!! He is so adorable- as are all your kids!
Thanks for posting all the other links too- those are some great resources- esp the Supersib! What a great site to think of the siblings of kids with cancer. You do so much to raise all of our awareness. Thank you- you are so selfless, always thinking of others with all you have going on.
We continue to pray for Grier and that you will hear soon from NYC.- Love, Jennifer
So happy to see you and Grier in the balcony at Roger Day yesterday! What fun we all had -- he is really great and we were lucky to have him at ETES! The SUPERSIBs are super -- Grace comes by to say good morning and we often see Hayes in the hall going to lunch -- loved the pics of them with Grier. He's lucky to have them! Hope CMC went well yesterday -- I love the neon around so many of the windows of LCH -- has Grier seen it at night? After all, that's his home away from home! So happy that things are going well and continue to pray for swift travel to NYC and the next phase!
Love and prayers always,
Betty G
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