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!