Thursday, March 27, 2008

1 Year~~~ we made it with the help from so many!

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--!!

11 comments:

Anonymous said...

WOW!
What a beautiful, eloquent blog you just wrote. It will bring tears to the eyes of all who read it, and remind us all to thank God for the blessing of Grier's life and all who have touched his life. Grier, and the entire Christenbury family, have certainly touched the lives of so many people this year. How courageous you all have been, carrying on with determination and high spirits, and mixing it with a sense of humor when you could. And the awareness you have created about childhood cancer has certainly been a blessing of this experience.
All who know Grier will celebrate his life today, and I pray God's richest blessings on all of you.
Thank you, Amy, for sharing your gift of writing with all of us so we could share in your joy and your pain.
Go Grier Go!!!!!!!
Love,
Janis

Anonymous said...

How beautifully you have shared your feelings... again! It has been a year that will never be forgotten. The year ahead will be filled with the unknown... again. However, I know that you will take what comes, handle it as well as possible, keep on loving your family and friends, and keep on believing that a cure for NB WILL be found!

So many prayers were given and answered this year and will be in the next year and for as long as it takes for Grier to be forever free of NB.

Much love to all of you!

Betty G

Anonymous said...

It's amazing to look back at an entire year.
Grier looks so good right now. All he's gone through and he's still so sweet and happy (all you've all gone through and you're all still so positive). We're looking forward to having you all at Steel Fab's opening day game tomorrow.
And I really think Johan Santana is going to make a big winner out Grier's Mets. Say it for us Grier!

The Todds

Mary Ellen Paine said...

rickYou are an incredible human being. How lucky we are to have all of you in our lives. So so happy to see you and Grier today. You both looked great.
I hope you have a wonderful weekend and just know your prayer angels will be working overtime with the scans coming up.
Love to you all,
Mary Ellen

Anonymous said...

What a long and courageous year you have all had! I am amazed at your strength and spirit. You truly have been an inspiration to all of us in so many different ways! As always, you and your entire family remain in our thoughts and prayers! May God give you the strength to continue this journey and find a cure for NB. Go Greir Go!!! We are all pulling for you. Here is to a healthy, happy year.

Love,
Sally, Pete and Molly Brown

Anonymous said...

At first I was nervous about reading the anniversary blog. Why, I don't know. Now that I have read it 3 times in a row I can only say thank you for sharing your thoughts with us in such a special way. Being able to cry and laugh and see your strength is such a blessing to all of us. We will continue to pray and celebrate the prayers already answered. Thank you for letting us be a part of your lives. We love you and will never stop praying for a cure for NB and for continued blessings for your precious family.
GO GRIER GO!
GO CHRISTENBURYS GO!
Love,
Kim Harden

Anonymous said...

amy - your strength, courage, candor, faith, hope and love are an inspiration to all....GO GRIER GO!
we are keeping you in our thoughts and prayers,
love,
the smiths

Anonymous said...

Dear Sweet Amy - thank you for sharing all that with us. Thank you for sharing so much of yourself and your family with us over the past year. I continue to be in awe of your strength and determination, your love for your family and friends, your dedication to finding a cure, and mostly for your good humor through all that you have experienced.

Sometimes when I read your blog posts, I imagine us standing in the parking lot at Covenant after drop-off on a nice sunny day. We are chatting and laughing and all is well. Those times were really not so far away and I pray for a time when they will come back to us.

I pray for Grier and all the Christenbury family daily. Leila is thankfully sleeping through the night (at last) so I'm not praying at 2am ... but I am praying at other times during the day :)

Much love from our family to yours.

Go Grier Go!

In peace,
Nibal

Crystal said...

I am so glad you have all reached this milestone. What a bittersweet aniversary, I love how you have been able to keep us all connected to your ups and downs, your fights and your fears. That is amazing. I'm so glad to see his hair coming back in well an that you had a peaceful Easter. Whatcha doing next weekend?

Anonymous said...

Your blog has moved me! We pray for you and the entire christenbury family daily and rejoice in this milestone with your ups and downs thur the year. Thank you for sharing your journey with so many.

I am so excited that you where able to be present for the birth of Sawyer I know what a wonderful celebration that was for you!

May God continue to keep you and your family close. we continue to keep you and your family in our hearts.

Netha and all

Anonymous said...

So eloquent have you been from day 1...I know I could never have been or remain that "collected." Indeed, for some time I missed your fun giggle and looked to a day when it might return. As well, I looked to the day when I would see Grier playing in the front yard again. Both have happened and I am so thankful. You are a dear friend. You've taught so many of us how important love and family and friends are. Somehow we never know just how much we are loved until we truly need the outpouring from friends and family. Indeed your family, more importantly Grier, is beyond precious to so many! I do applaud you for braving the storm and teaching life-long lessons to me and my family.

I love you, dear friend; and, we adore sweet Grier and pray for a cure that one day he will be free of NB FOREVER...not just from one scan to the next.

Peace & Love to you ALL...
Dina

GO STEEL FAB!

GO STEEL FAB!

Go Grier Go Magnets are Here!

Go Grier Go Magnets are Here!

Grier's address in NYC

Grier Christenbury
Ronald McDonald House of New York

405 East 73rd Street

New York, NY 10021

Before 3F8

Before 3F8

After 3F8

After 3F8
30 minutes later

Free Money for Go Grier Go!.. just by shopping online!!

iGive.com

Grier leaving NY-pres and going back to MSKCC

Grier leaving NY-pres and going back to MSKCC
www.cornellpediatrics.org-- Great hospital!

Grier going for a ride in the ambulance across the street

Grier going for a ride in the ambulance across the street
just transporting-- not an emergency!

Grier patiently waiting surgery to remove tumor

Grier patiently waiting surgery to remove tumor
Monday 10/29/07

Go Grier Go Picnic in the Park

Go Grier Go Picnic in the Park
Thanks to everyone that helped!!!

On the way to NYC!

On the way to NYC!

Grier at the "new" clinic at CMC

Grier at the "new" clinic at CMC
Playing with the doctors and nurses 10/19/07

Some of our team at the Hopebuilders 5k

Some of our team at the Hopebuilders 5k

HOPE IS GOOD!!

HOPE IS GOOD!!

Supersib- GRACE

Supersib- GRACE

SuperSib-- HAYES

Grier and his Wonder Pets fly boat cake!

Grier and his Wonder Pets fly boat cake!
I am 3!

Grier & Grace at Covenant

Grier & Grace at Covenant

Grier & Pat

Grier & Pat

Go Grier Go!

Go Grier Go!




Jack and Charlie wearing Go Grier Go T's

Jack and Charlie wearing Go Grier Go T's