Wednesday, June 15, 2011


one week ago-
We have been home one week... Grier finished all 7 days of his 42 pills...we celebrated two birthdays ( Hayes-14 & Grier-7), one 5the grade graduation, 7 baseball games, one doctors visit, one dentist visit... and caught up on SOME of thee mail and listened to all thee phone messages... ( sorry.. some were really old!)

Sounds like a busy week, huh? Grier has had some side effects from thee medicine.... this time his feet did not turn bright red... instead they blistered! Grier said it looks like he has "pads" on his feet-- he is right-- the blisters are now white on his heels and toes! We went to LCH today for a check up and blood test... check up went fine... his skin is irritated everywhere there is some friction... armpits, feet, hands, thighs, you name it- hopefully this will clear up soon since his last dose for this cycle was last night. His counts are hanging in theere... I actually had theem draw an extra tube of blood for a type and cross just in case he needed a transfusion like he did last time... amazing his hemoglobin has not fallen yet and his platelets are still over 100-- I hope they stay that way... the not so good news is that his ANC is 200 ( NO IMMUNE SYSTEM)- We will have to go back Friday to check again... My hope is that his counts have already hit bottom and they will go up in the next fews days... Besides these side effects, Grier was not so enthusiastic about the pills this time... We had several moments where he was just pissed off that he had to take these pills... and he could NOT eat... He told me to call Philadelphia and tell them he did not want to do this medicine again... Maybe this is truly how he has felt all along -- he just needed this medicine to bring out these emotions... I understand how he feels a little... he has been a test mouse for a LONG time... over four years...! 
I don't think he looks as healthy as he did before we started MLN... he has a "gray" look to him... and obviously it is not anemia since his counts are ok.... His hair has totally fallen out... and he looks like Mr. Clean when you put sunscreen on his head.... his eye lashes are almost all gone... and I think that is the kicker -- eye lashes and eye brows make such a difference - that may be the difference I am seeing.

Our family beach trip is coming up this Saturday... it is pretty much a given he is going to have to get his counts checked next week... and since his counts are so low right now.. CHOP has already told me to plan on going twice next week. The good news is he is only going to have to get a finger stick... I have been told not to let anyone touch the port unless it is an emergency... Probably the most reassuring part is that we will go into Wilmington and see a pediatrician that my friend, Anne knows and has already talked to-! We wont have to go to an urgent care.  We will still have to fax the results to CHOP... but that should be easy.... 

So, we have survived thee first 3 days of summer at home... I will be honest... I have only looked at the FOR SALE ads once... 3 days and it didn't take too long to feel like we were all on top of each other! The key is going to be staying busy and not at home! So thankful we will be at the beach next week so we can spread out and relax! 

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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