A little Nausea.. birthday, soccer, and baseball!

Grier didn't feel that well early this morning. But around 11-- he perked up and started eating "krispy" doughnuts and grapes! Mrs. Leary came by and played with him and brought some candy that he is enjoying!!! Baby Bottle Pops!! He showed them to Hayes and Grace tonight but was not going to share! Thanks to my mom-- I made it to the baseball game. Jeff, Hayes, Grace and I went to Cantina for her birthday dinner-- ( her choice) and we got take out for Grier and Mags! Grier ate a lot for dinner and then helped with the blowing of the candles on Grace's cake-- we did it quick since we were not sure if we would set any alarms off with the smoke!
Grace seemed to have a good birthday even though it was chaotic!!!

What a busy day and Hospital! + Update

Ok- The day started with Grier excited about going to the hospital-- weird.. I think! But he did not want breakfast at home because he said he would get something there--
We got to clinic around 9:30 and had blood work done-- Around 10:30 we find out that there are no empty beds on the 7th floor so we would start fluids in the new infusion room at the clinic-- That was the best part of the day-- the room has tons of windows and fun things for the kids to do--- besides TV! Jeff came and stayed with him for an hour and he played with Julia ( another child with Leukemia) and made Grace a birthday card-- I went to ETES to do a birthday class treat for Grace! Around 1:30 a bed opened up and we made the trek over to the 7th floor-- And as of right now, still have not started the chemo yet-- Crazy Day!!

We met a few new kids today-- the clinic was busy-- One 10 year old was diagnosed the same night as Grier with AML-- we have been on the same chemo rotation a few times but never met-- She is doing great and had her last chemo last week!! She also has Dr. L as her doctor! Here is a great article about her-- www.charlotte.com/280/story/280059.html

UPDATE--as of 9:00pm
Grier finally started round 6 around 5:45pm-- I guess that will mean a late discharge on Monday :)
He has been busy playing Hungry, Hungry, Hippos!! I forgot how LOUD that game was!!! He played it for the first time in clinic today. When we were finally called over to the hospital, he did not understand why he could not take it with him!!! Well-- Thanks to Kristen in Child Life another game was found on the hospital floor-- And it is being well loved in room 7927! I think I am going to have to find our old one at our house tomorrow---

I am going to share a new cause with you!!! I know all of us have kids on teams- soccer, swimming, baseball...whatever-- And at the end of every season we get together and buy a gift card for the Coaches that have so graciously volunteered their time. Well, here is a great idea that I recently have been told about a few times this week and I think it is worth sharing--
www.curingkidscancer.org--- Coaches Curing Kids Cancer
I am not sure how many people read this blog-- but I hope that you will pass this idea to League Presidents, team moms, etc-- You basically honor your coach by donating money to this organization--- I really do not know anyone who would not like this-- It is going for a good cause-- And just imagine, instead of the Dick's or Favorite Resturant gift card, if the 200 teams of Charlotte Junior Soccer donated 100 each - $20,000 would be used to work toward a cure for kids! Go to the website -- it is very easy to navigate-- And pass this idea around- please!

Friday -- We check in for #6

We will go to the clinic tomorrow and Grier will have blood work done- After the results are back we will walk to the 7th Floor and begin the 6th round of chemo-- It is the last one in the protocol he has been on- The chemo will last 72 hours and then hopefully all will be good and we will go home on Monday--

MSKCC- has what they need and are reviewing Grier's case-

Grier is eating well without the TPN, so I hope this continues as he feels the side effects of the chemo-- He does not even realize he has not been on TPN-- This morning he woke up and I heard.. "Mom..Mom... I just heard the pump beep, so can I get up?"--- I had to show him he was not connected to anything!

Thanks to all that have supported me in the Hopebuilders 5K-- The last time I looked our team was a little over 9K!! October 13th will be here before we know it!

Things are slowly getting answered!

We went to the "new" clinic today. It moved last week, and it is not in the hospital anymore but in a medical building across the street from the ER-- He did not even remember going to the new clinic last Monday-- that is how sick he was!
Today, Grier's counts were good and they said he looked good too!
He is still on IV antibiotics-- but instead of Saturday as the last day-- it will be this Wednesday! Jeff and I are thrilled-- we are a little sleep deprived!
No other news from NYC-- we are still waiting for a doctor to doctor conversation-- Our Doctor has tried to get him but he is a very BUSY surgeon-- sounds like he lives in the OR! We have a deadline-- if we do not hear that Grier will have surgery within the week-- he will get the 6th round of chemo- here in Charlotte- I feel better that there is some plan-- chemo will buy us time and hopefully shrink the tumor more so surgery will be easier-
We will know if he will do the 6th round by Wednesday-- I have tried to work it to be home for Grace's birthday (9/29) but it looks like Grier will be doing chemo if we are in Charlotte--- so we can have another party at Hotel CMC !
Hopefully, I can update tomorrow and let you know where we will be within the week!!

NO more clowning around!

I have called the clinic twice today to see if the papers that needed to be faxed were faxed to NY-- I am sure they are sick of hearing from me-- but after yesterday when I picked up the phone and called MSKCC myself and had no problem getting through I decided I was going to do this myself! So far, they are working on them but I am going to call around 4 to see if they are done-- weeks have been wasted! This was prompted by a conversation yesterday while at CMC, the doctor on rounds came by and said they were trying to get in touch with Sloan-- and I casually said -- when I get home I will try too! He said that he would be surprised if I got to them but go ahead--- WELL---SURPRISE Dr. ????! No stings were pulled--just dialed a number on the WEB page!

Grier is doing fine at home-- He is eating great in my opinion but we will see what the Dietitian says on Monday when she looks at the food journal I have to keep on him-

Antibiotics are going well too--

Update!! As of 4:15 and SEVERAL calls later back and forth to clinic to MSKCC-- they have faxed the paper to NY and NY has it! :) Now let's hope FEDEX gets the rest to them on Monday-

Home!

We got home @ 3:30-- Grier was more than ready to leave !!!

News from MSKCC-- They will be receiving tons of reports on Grier tomorrow by fax-- and some other things by FED EX-- Then they will review it to see if he is a candidate- So- at least something has happened!

Grier will be on IV antibiotics 3x a day EVERY 8 hours-- this is the same routine we did at the beach so I will have a huge smile on my face in about 8 days when we are done-

ps-- as you can see we made it to the Festival in the park!-- One day down and three more to go!!

Just a little stressed!

We had visits from the doctor on call today-- first telling me that his white line also grew out the same germ as the red-- not a huge surprise- and they were going to back off all antibiotics except for Vanc-- Then they came back as a team and said the lab thinks it was a contaminant--- heard that before here at CMC-- but I tend to disagree since he clinically was SICK-- something made him spike the fever- So, the plan is to keep him on the 1 IV antibiotic and hopefully go home tomorrow and I will administer the medicine--- You know I have my nursing degree now!!! :)
And the question I ask every time they come in is -- any word about Sloan and surgery??-- I am told they are having a hard time getting in touch with the
surgeon AHHHHH! So, I did ask if waiting this long was OK-- because he still has active NB cells in the tumor-- and today they said Well, we need to decide how long to wait and maybe we need to do something in the meantime-- SOMETHING? is the question of the day--- another round of chemo...??? what? So, we are waiting to see what we hear-- Let's just pray that my Dr. gets in touch with the surgeon at Sloan--that is who we want to do the surgery-
He is feeling fine-- a little restless-- and ready to go home! He does not want to miss Festival in the Park!!! He is eating and possibly may get to go home without the TPN (IV nutrition :)!!! That would be great-- he would be able to sleep without getting tangled up in cords and no alarms for me to reset at night!!

www.mskcc.org/prg/prg/bios/43.cfm

It was his red line!

The nurse came in this morning and said a bacteria grew out in his red lumen-- which makes sense since that was the line used yesterday at home to draw blood for the CBC- so as soon as it was flushed yesterday the germ was pushed to into the blood stream- The NP came in and said to go home he needs to be fever free and they need to have negative blood cultures-- And as soon as they identify the exact germ then we may be able to back off some of the 4 antibiotics he is on !

Things change in a second!

Well-- I was hoping to update with some sort of news about moving forward with surgery... BUT things took a turn for the worse!
We took Hayes and Grace to school as usual and got home around 9-- Kidspath came round 9:30- she needed to draw blood for a CBC- Grier was playing and watching TV while we waited for kidspath-- he got really excited because she was in the driveway and we planned to go for a walk after she did the bloodwork-- He sat and had his lines flushed and all of a sudden started with the chills-- it was very strange-- at first I thought he was trying to tell the nurse that it was cold outside-- but he kept shaking and stopped talking- The nurse left and said if he continued like that to call the clinic- well I called as soon as she left and they said to bring him in! We got to clinic by 10:15 and he had a fever of 104.9! He did not have a fever at home so the 104.9 was a little shock!
He was given fluids and started a few IV antibiotics in the cllinic before we walked over to CMC! Yes-- he has been admitted :(
So, we are here-- his fever went down after tylenol to 101-- but an hour later it was 103 again- He does not feel good and is not happy about staying here--
I will update later-- Hopefully we will be home this week some time--

We had an appt. today and his counts are slowly coming back--- the good news is that he did not need any blood products.

We have decided that we want to go to Sloan Kettering in NYC. There is a surgeon there that has lots of experience with Neuroblastoma and is well known in his field-- He is very meticulous and that is what Grier needs! So, now we wait to hear when we can go-- hopefully soon ( within the week) and get this next step behind us and get back to CLT as soon as possible to get back to our "new normal"-

As soon as we know when we can go we can make plans to get there and hopefully get a reservation at the Ronald McDonald house-- So, a little more waiting is in store this week-- I hope to update with details very soon-

Are we done yet???

Grier got a pint of blood today-- and from 9:30- 3:00-- must have asked me 1000 times if he was done yet!!! He did not even fall asleep after benadryl--
We met a cute little girl in the transfusion room today-- she was doing her 5th grade work while Grier was crashing his car into the wall, coloring pictures, watching Einsteins, and playing with Playdoh-- I am telling you this because September is Children's cancer awareness month-- and before Grier was diagnosed I knew of a few kids that fought this fight but now we know so many-- This link was something I saw on a caringbridge site and thought it was worth sharing-- http://www.youtube.com/watch?v=AGS4yE5v9rM
No other news to share-- Grier is napping after a long day at the clinic-- Entertaining the nurses makes him tired!!!

This picture was taken this weekend of Henry and Grier-- Henry is the Holy Trinity middle schooler that wanted to help Grier so he came up with an idea to sell popsicles during their field day last Spring-- Henry sold a lot of popsicles and gave Grier a nice gift! Thanks Henry for your thoughtfulness---!

Something funny to watch!

The weekend was great-- I just realized that we have been home for almost 4 weeks straight-- he did not get that "in between treatment" fever like he had for the rest of the cycles---"Whoo Hoo"!! As Grier would say! We shared lots of fun times with friends and family and Grier was busy playing baseball as usual-- I have a movie if you want to see it-- I hope it works-- I am very new at iweb!!! http://gallery.mac.com/achristenbury/100000
Tomorrow we will go to clinic for another blood transfusion-- it will be a long day-- And hopefully we will find out where he will have surgery soon--