This is the day last year that changed our lives forever-~ I have thought about this anniversary a lot lately. I have written this entry a million times in my head-- I did not know whether it would bring a sense of sadness and fear or a sense of hope and joy— And I can say it has done all of the above--- I have found myself in quiet moments re-living moments of last March 27th-- The hospitalists tone when he so abruptly told me what was wrong with Grier. The phone call I made to a friend trying to speak when I could not. The text message I sent to a friend that said NEUROBLASTOMA (not knowing exactly what that was)~ The many faces of family and friends that I saw at 11pm at CMC… and for days and weeks after the 27th. The first meeting with Dr. Longee and the hope that he gave us. The shock. The disbelief. The tulips. The visits with friends and family. The blue Go Grier Go bracelets. The army of people that took care of our family during the early days. The wonderful 7T nurses and staff. The emails and cards. Susan our recovery room nurse. Pat Taft. The singing at his bedside of Razz Ma Tazz right after one of the many early procedures by Mrs. Leary. And I could go on and on … But there are many things I do not remember and the blog has been my saving grace!
The blog has helped me stay in contact with friends and family without spending hours answering phone calls and emails—But I must admit it makes me very tired to read the early entries – I can not believe Grier went through so much as well as the rest of our family, especially the supersibs—It also gave us strength from the entries from Grier’s team… there were some that would write everyday and still do!!
I can happily say we made it with the help of family and friends and our faith—WE MADE IT! Grier did far better than expected and in some ways carried us through this-- We are now living WITH cancer and still live day by day—I know some will find that odd but it is the way we have survived for so long—
I am reminded everyday (yes, I read caringbridge sites too, and I am a lurker!!) that we are not the only family living this way-- we have met some wonderful people from all over with their own pediatric cancer story and they are just as strong and courageous as Grier and our family—I remember going to the clinic for the first time and meeting Julia… she was dressed up in a princess outfit with a grin on her face—the nurses and staff were welcoming to all that entered and I was numb—but gaining strength watching the veterans of the clinic—and now I can say we are a veteran of not only our Charlotte Clinic but MSKCC as well-- WE MADE IT! We made it through a 10-hour surgery (with a huge sense of peace around noon that day). We made it through so many ups and downs. We made it through the first “buzz” cut and later the first sight of him bald. We made it through 7 rounds of chemo- We made it through so many scans. We made it through countless pokes and injections. We made it through 14 radiation treatments. We made it through 2 cycles of 3F8. We made it through the unknown. We took all of this and made it our new normal— We do not take any of this for granted… We know of far too many kids that did not make it this past year—They “lost/won?” their battle with cancer and became ^Angels^. Pediatric Cancer research is still lacking appropriate funding—we need to do more so these brave kids that fight everyday can just be normal kids – and a cure can be found so no family has to have an anniversary of a diagnoses!
I wish I could say we are done… but we are far from it- We still need a cure! Or the very least a treatment that is not so toxic to the kids.
Each set of 3-month scans brings back a lot of uneasiness and fear that the scans will find more NB in his little body. And if they do… we will make it again and start all over knowing we have wonderful friends, family and strangers that are supporting us everyday as we battle the beast called Neuroblastoma—(I know what it is now!!!)
Thank you again for all that has been done for our family this past year… meals, rides, donations, organizing help, wearing a Go Grier Go Bracelet, Putting a magnet on your car, prayers and good wishes, phone calls, visits, gift cards, flowers, TOYS, hats, cards, and the list could go on—
This day will be marked in our lives forever… but so will all the acts of kindness given to The Christenburys— THANK YOU! THANK YOU! THANK YOU!
GO GRIER GO--!!
