normal

A quick update to say that we have cancelled the brain MRI and bone marrow test-- the pee test came back within normal limits so we will wait 2 weeks to continue with the rest in NYC- He has not had any pain since the CT scan was done so we feel good about waiting for our NY trip to do the full work-up.

Other than that everything has been great-- Grier feels good except he woke up with a cough/bark- another normal thing for us to deal with!!

The other exciting news is that Grace got braces yesterday and she is so excited-- her teeth are sore but she is already taking really good care of them-

Looking forward to see what 2009 has in store for us--- Goodbye 2008~!

Merry Christmas Ya'll~

Merry Christmas from our home to yours---
Grier seems to be feeling much better-- He is not complaining about anything and still sounds hoarse! He did not have any additional tests this week-- mainly due to a scheduling nightmare-- and I was not willing to offer to admit him or withhold food from him until 5pm -- I am trying to give him a Christmas that a 4 year old should have-! It looks like it will be next Wednesday for a few tests-- and hopefully by that time the "pee test" he took last Friday will be back from China-- ( not really-- but it does take a LONG time to come back!)-- and we will know something-- the markers in the urine are reliable so it could change all plans depending on what it says!

I am having a hard time believing today is the 24th--- Christmas Eve-- Where did December go? We have been so busy doing all of our annual Christmas traditions as well as adding new ones this year-- We rode around looking at lights-- and Grier told me that the house Mrs. Bailey told us about is better than the lights at Hollywood Studios in Disney... ( Mammoth Drive if you want to check it out for yourself!!) We also added an Elf on the Shelf named Freddie to our tradition and this has been fun-- Grier tried to beat the other 2 up each morning so he is the first one to find Freddie-- and just yesterday he came running in to tell Freddie to tell Santa that he had one more thing he wanted-- I was trying to explain to him that Freddie can not tell Santa things this late!! I think he is going to be very upset to see him go back to the North Pole tonight. One of my favorite things is the cards-- we love to look at them- The Nativity at Park Road Baptist is a favorite for all--- and Grier finally gets the story of Christmas this year-- I was laughing so hard last night as he asked a million questions as we watched the Wise Men, Angels, and Mary and Joseph-- He knew it all and we asked him how he knows all this and he said "Miss Beff" tells me at school!!!"--- And we went to the Children's service at Covenant today--- and again he knew the whole story and really gets what Christmas is about--He loved seeing all the animals and I loved seeing the donkey walking down the aisle of the church!!


We hope all of our new friends, old friends, family and special friends we have met along the way this past year and a half--have a wonderful Christmas full of HOPE, PEACE and JOY.
Merry Christmas-
A, J, H, G, & G

5 more days and Christmas will be here and we are all excited at our house. Grier is into all the traditional Christmas activities and he can not be happier. This is the first Christmas I think he remembers since the last 2 were spent while he was sick---

With that said-- I will tell you what a crazy few days we have had--- A couple of days ago, Grier woke up and told me his back hurt. I took a deep breath... tried not to panic and chalk it up to the day before he was doing karate spinning kicks for most of the afternoon. He then told Jeff the same thing... and later he told my mom.. so the sick feeling in my stomach wasn't going away! The next day he complained of a headache--- and you can see how I was started to feel about these symptoms... but he went to basketball and played like a crazy person for an hour and then ate a great dinner--- On Friday... first thing he says to me is... " My neck hurts"--- and I freaked. As I was getting ready he is complaining his head hurts. I quickly went into that prepare to leave mode as I got everyone ready for school. I debated who to call.. NYC or CLT? And after dropping off Hayes and Grace at school -- I called Dr. M in CLT--- and you can imagine how that conversation went.... His great nurse told me to come in right away. Grier and I headed to the clinic-- Grier asked where we were going and I said -- to the clinic so Dr. M can look at your neck and he said OK! OK--- not the response I wanted from him-- maybe... NO, MOM I feel better now--- but not OK! So, I knew he felt bad-
We got to the clinic and did the drill--- weight, height, and are you in pain anywhere etc.--- and Mom-- Why are you here today?-- well-- that was round #2 of losing it! They put in an IV-- actually could not get it in at first-- but the 3rd time was a charm! We talked about how these are the symptoms that started this whole thing in 2007... and the fact that Grier does not complain ( he ran into the ladder that goes to the attic two weeks ago and it barely phased him--he looked like he had a broken nose but he said it didn't hurt!) He has a VERY high pain tolerance-- We did a urine test-- but that takes several days to get back so the only option was a CT scan- Grier has never done a scan w/o anesthesia so it was going to be tough to get one scheduled w/ anesthesia w/o being admitted into the hospital ( I did not want to have him admitted)--- So, we decided we would try to do it w/o anesthesia if they could work us in that day--- They ended up having a 3:30 opening. Grier had not eaten all day and actually was sleeping a lot in clinic-- we went to the scan and he had to drink this contrast-- he did it with lots of coaxing! They finally called him back to the "doughnut machine" around 4:15. He laid on the table had his head strapped down and was perfectly still while they scanned his head, neck, abdomen and pelvis--- We talked to him and said this was like a ride at Disney--- yes... a long shot but trying to make it fun!
We headed back up to the clinic and waited for Dr. M to come tell us something--- he came in and said he needed to go talk to the Radiologist because Grier has had so much surgery he wanted to make sure he was seeing everything. It seemed like a long time but he can back and said he did not see any new tumor or mass-- But he agreed he did not look well when we were at clinic and gave us options --- one being wait and see if the pain persists over the weekend then we can do more tests. And the other would be to do an MRI and bone marrow on MON, TUES, or WED to rule out marrow involvement-- We had a huge sense of relief that the CT did not find anything-- but we know NB is difficult to find so now we are deciding what to do-- Our full work- up will be on Jan. 19Th in NYC- We went home around 5:45-- and to say it was a long day is a huge understatement! Grier was talking a little more-- and if you know him you know he normally talks ALL the time! So.. he was still off a little-
Last night was not so great-- he did not sleep well and had bad dreams-- I would say more like night terrors-- but he did not complain about anything this morning hurting him. As the day has gone on -- he has perked up and actually has a little bit of a raspy voice! I am actually excited because it could mean he has something viral like we talked about yesterday-- But yesterday he did not have a cough, runny nose or sore throat. He is talking a lot more and even singing his songs again! I think he is feeling better... He does have some battle wounds from yesterdays tests-- both hands are bruised from trying to get an IV in and his arm was sore where it was in-- He told us how brave he was for being so still yesterday-- and I totally agree! I was not as brave as he was-- I just kept thinking of all the scenarios -- this time knowing too much- and trying to find my "game face" I was so good at many months ago!!
I am praying this whole thing was viral -- maybe we will all wake up with it in the next few days and I will be thrilled! I am sure this will be one of many times I freak out-- but it is really hard to tell what is NB symptoms and what is a normal kid illness---
This is certainly not the update I wanted to do at Christmas-- but it made me stop and think about how lucky we are today and not take it for granted-- because it all can change in a second!

THANKFUL!

Where should I begin this post? I hope everyone had a very nice Thanksgiving--- we did! And we have so much to be thankful for. I thought about listing them all but whenever I try to do that I always forget someone-- so I will not make a list! If you read this blog and have said prayers for our family during this ordeal called "CANCER" -- we are THANKFUL! You can not help but think that they are working when you see Grier-- I know.... I know... NED is not a cure but I am hoping that we continue on this path that we are on until the year 2012!... I am enjoying watching him grow into a preschooler with some personality! If you have done something to help me raise awareness and money to find a cure-- we are THANKFUL! I can not believe how much we have done in the last 6 months-- a great bake sale and a HUGE walk that raised a lot of money to help find a cure plus all the other things you all have done on your own! We are THANKFUL for all of Grier's past and present teachers! He made something at school and he is THANKFUL for Tucker ( our dog!) and Frisbees, soccer, and every other sports object in the catalog he cut pictures from! I am THANKFUL for FIRST PRES WDS-- he has gained more confidence -- made some great relationships with friends and teachers--- and sings songs he has learned all day LONG! So much for trying NOT to make a list-- but WE are THANKFUL for everything and that includes all of YOU!

Some of you know how we spent Thanksgiving this year-- It was not the norm but ended up to be very special and fun! My mother and her sister, Linda took us to Disney World for 4 days! No-- this was not his make- a - wish trip-- it was just a quick trip to Africa ( we stayed at Animal Kingdom Lodge!)-- 3 days and 4 parks ( Animal Kingdom, Magic Kingdom, Epcot and Hollywood Studios!) -- Hayes and Grace rode every ride they could -- sometimes even twice! Grier rode his first roller coaster and his favorite ride "DUMBO!"... saw some great shows and ate popcorn at all four parks! We had a lot of fun -- THANKS MOM and AUNT LINDA! We were able to do all these rides with little to NO wait because of a letter from our great social worker and Dr. Kushner in NYC-- as well as Disney's guest relations and the inside tip from Julie Sparks!! We are THANKFUL for that too!

We are THANKFUL to be home for the HOLIDAYS-- last year was a blur since we were gone more than we were here! We are THANKFUL that we had a home away from home last year at the RONALD in NY -- We are THANKFUL for Grier's doctors in NYC and CLT-- as well as both hospitals! I think we can safely say we are THANKFUL for everything!

ps-- If you are looking for a gift to send to family and friends... like some delicious cookies... I would be THANKFUL if you would go to www.cookiesforkidscancer.org and click on buy cookies! You will feel good because you have sent a gift that is delicious as well as helped fund research for a cure for pediatric cancer! Also-- if you are on the website and you click on children that inspire us--- you will see Grier..and a few other kids -- This is the fundraiser that Liam's mom started last year and they ended up donating $400,000 to MSKCC--