4 years= 209 weeks..
1461 days ... 35,063 hours--
That is a lot of time spent feeling like you are in quick sand!
I was waiting to write our 4 year anniversary update when we returned from NYC... March 27th is that date I will never forget.... and amazingly enough March 2011 will be another date on our mental calendar...
Grier's MIBG that he had last week showed new disease on his hip... same hip that we treated last time. He also has suspicious uptake in site of thickening in the lining (pleura) of lungs on the left-- It has been recommended that we start high dose chemo... called CTV.. I am assuming this Monday. I need to call and talk about that. As much as I want to stay here I am not in the mood to deal with chemo starting at night... and the other nightmares we have dealt with at LCH. Yes, I don't forget those long days at LCH and as much as they have promised before~ I am not sure it will start at a decent hour. The other option is for Grier and I to go to NYC and get chemo in the clinic everyday but go back to the Ronald every night. The only issue may be getting home before his counts drop and he is immune compromised.
As my friend said last time... this is another pit stop in the long race... BUT it sucks... My game face is not quite ready but it will be soon. And we will do what we have to do make this disease retreat again.
We will just add this to our schedule and get these 5 days of chemo done. Then he will have another MIBG/CT scan to see how it is responding.
OK-- I am going to ask for normal for the next few weeks... email me or text me... I will not have time to talk to everyone. Please don't just stop by... sign the guest book...
Sure I am disappointed for a number of reasons but he/we can do this again.. He doesn't feel bad nor does he act sick ... so he will get some medicine to kill those unhealthy cells... and hopefully not feel too bad from the medicine that does not know the difference between healthy or unhealthy cells.
damn pit stops!
Amy
11 comments:
we are thinking and praying for you all and for this Damn Pit Stop!!!!
Netha
I've been following Grier for a little bit (found you through Prince Liam) and just wanted to let you know I am praying for a defeat of these blasted cancer cells. Darn this pit stop! Know that lots of prayers are headed your way from the middle of Indiana.
Amy,
We love you and praying for all of this to go away forever!
Shannon Deitz
Amy, I gave up facebook for Lent, so I haven't been able to follow Grier on there. But I just stopped by the blog and saw the news. Thinking about you and praying for you. Can't begin to imagine how you do it all. I'm praying for all of you!
Our prayers will continue... We think about you each day. What a guy, what a Mom, what a family!!! Love, Nancy Williams
Love you guys. :(( I'm here 24/7 for you guys during this stupid pit stop. Seriously.
-Maclean
This makes my stomach hurt Amy, and yet at the same time, as I read your words and sense your drive to knock out this next f&*%ing pit stop and I marvel at your endurance and your spirit. I dare say that you are a pit crew chief unlike any in the race world! Cancer has nothing on you, Grier and your family. You dominate every time. xo Alex Bacon
Glad there's something I can do! I'll be co-hosting a Cookies For Kids Cancer Bake Sale the weekend of May 6-8 at Fort Mill's Strawberry Festival. I sure hope ALL of Grier's prayer warriors will hold a bake sale. Every dollar counts!
Kerri Norwood
ARGHHHHH!!!!!!!
I HATE this and I hate that you know how to process speed bumps so well after so much time and I hate that Grier has to put up with this again and I hate that spring break is around the corner and all is on hold and I hate that you are a slave to the tests and meds and annoying ports and airports and cramped accomadations and I hate that the family has to be split again.
I am glad they know what to do next and I am glad that every time between speed bump offers new treatments time to declare themselves.
And I know that unbearable roads are walked and conquered every day but what is demanded of us to navigate them really can seem impossible. And it is ok to howl at the moon. Oh Amy to take this away from all of you.
Ashley.
Grier and your entire family are in my daily thoughts and prayers!
Cheryl Breen Kewley
Praying for your tough little man. God bless him and know that people that don't even know him, are following your blog and bringing awareness of this beast of a disease. I am doing my part to raise money for your adorable son through my church and my company. Stay strong and know that you and your family are such an inspriation. Peace be with Grier, you and your family and friends.
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