Thursday, January 29, 2009

It is Thursday and my expectation of hearing something from MSKCC early in the week was not right--I was getting very anxious and know they are busy but I wanted to know so we could rest a bit!   After many emails to the doctor asking if he has heard anything about Grier's BM and urine tests.... I heard from him today and it said.. "Show no evidence of NB- wonderful!"   I love the fact he answers emails but they are short and to the point-  I think this makes the one year point of Grier being NED ( depends a bit on when you consider the first time he was NED!)-- I am not going to speculate on statistics but I am THANKFUL for the past year-- easy year... HELL..NO!  It is hard to do scans every three months-- and even harder to live 90 days at a time-- but I will take it-- and hopefully we will get better at living at 90 day intervals!  
So-- that is the good news I can share with you all today-- I have almost recovered from the week in NYC-- I know some of you think that is crazy but that week wipes me out-- the stress of Grier's scans, the week of BAD sleep at the RMDH, and the other news around the house and the hospital that always impacts the week-- when someone relapses you feel the fear they feel as well as when you hear the horror stories of insurance maxing out, marriages failing, and families divided because of new treatment plans far away from their home-- and the worst is not seeing a family you knew because their little one is no longer with them.  Reality is tough on 73rd street!
Next week I am going to be on the insurance appeal warpath-- love that time in my day--- but it has to be done!  The funny thing is that I am not appealing NY procedures-- but Charlotte procedures-- The pediatric surgeons in Charlotte make my life crazy because they are not in contract with BC/BS--- and I have to play the game called---"APPEAL"  I think it is crazy that they are the ONLY pediatric surgeons in our area and have privileges at Levine Children's Hospital but make you appeal to get your benefits paid!  I knew when we had the port taken out we probably should have flown to NY to do it-- but I decided to have it done at CMC and play the game-- I am not complaining-- ( well.. I am a bit..) but I am glad I can focus on it right now--  I certainly try not to complain and often joke with people that this blog is the nice version of our experiences-- It is the version that I feel like telling right now-- !

Thanks for all the thoughts and prayers last week-- Continue to pray for cleans scans as we will do this routine until the year 2012~!  

8 comments:

Anonymous said...

Thank you for sharing the GREAT news! I'm so glad!

Stacy Sparks

Anonymous said...

Wonderful, wonderful news. Hang in there on the insurance front. It's such a pain to have to fight to get what you deserve and what makes sense. Nancy Williams

Mary Ellen Paine said...

So very happy for the great news. I thought I did really well not e-mailing you and asking. I restrained myself.
You never complain but know you are entitled.
I will continue all my prayers and pray also that you will find some peace in this.
Love to all of you and I hope to see you soon,
Mary Ellen

Anonymous said...

AWESOME NEWS!!! What a celebration and we will celebrate in Charleston w/ your good news. Sorry for the insurance game you have to play but I know you will put up a great fight and pretty sure you will win it!

Netha

Anonymous said...

so happy to hear good new. I hope you have time to rest and recharge. I hope all works out with the insurance.
thoughts and payers.

Angela Shea

Anonymous said...

So happy to get the WONDERFUL news from NYC! short and sweet from the doc is all you need when the news is good!

On to 3 more months of preschool, carpool, laughter, silliness, and living the life of a 4-year-old!!

Love and prayers will always continue for your family!

Betty G.

P.S. Our class at ETES donated money in mine and Kim's honor at Christmas to Teachers Curing Kids Cancer!

Anonymous said...

Our family is so glad to hear you have good reports. We will continue to keep you in our thoughts. Good luck with the insurance game. It's great to know you have insurance but a pain to have to fight for what is yours. Make it a game is a good way of dealing with it. The Eldridges

Anonymous said...

I was so glad to read the wonderful news. You guys have been through so much in the past year and yet you always seem to have such a positive outlook on everything. I am sure the insurance problems will work out, it's just a shame you have to deal with all that after all you have been through. I will continue to pray for your family all the way through 2012 and will look forward to all your updates. By August 2012 I will be dealing with both my kids going off to college and I will look forward to reading this blog and hearing that Grier is doing as well as he is today!

Patti

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