What a day!

So many things are winding down because summer vacation is almost here but there are so many things that need to get done right away (forms to fill out, projects, etc.)--- Today was a crazy day for Grier and I--- As I think about it now that he is asleep-- I can not believe he did so well with all that we did today--

Today was the last day of preschool--- I truly think he will miss going. He looked forward to going and talked about what he did that day for days after!
After school, we went to clinic for a HAMA blood test--- not a favorite activity for either of us-- he got through it with only a few tears-- Sharon, Dawn and Jennifer were trying really hard to distract him-- but he is smart enough now to remember what will happen after the "magic" cream aka lidacane goes on his port-- We went to lunch... lost the parking deck ticket--- jumped through CMC red tape to get a free pass to get out of the deck....went to Kinko's to mail the blood to NYC ( a new guy helped me so we will say a prayer it gets there in time!)...went to Centura to get forms notarized ( and met some really nice people that recognized my go grier go bracelet... see there is "power in a bracelet!"--- and then asked if that was "Grier"!! He entertained them for a little bit-)... dropped off a generic form of Accutane to exchange for the brand name version at Walgreens.... picked up Hayes and Grace... went to swim team ...... dinner.... gas.... and back to Walgreens...then sat in the parking lot on the phone with insurance arguing the cost of the accutane ($8 vs. $354.00)-- apparently the BRAND name is REALLY expensive and I have only been charged for generic in NY but always given the BRAND name! Any other time I would not care about generic but size matters this time--- Grier is 3-- he swallows 3 pills a day the size of a jelly belly-- the generic version is larger-- the size of a Mike and Ike or a Hot Tamale! So I am trying to reason with them and they really do not care-- So-- I end up eating the difference and telling the woman I will appeal it! I have gotten good at doing that-- :) Again it was one of those times-- I thought.. Did she just hear me say my 3 year takes this for a cancer treatment--???
AM I making you tired yet?????
I am sure a lot of you had this same day (maybe with or w/o the medical drama!)-- I did think a few times that May is like December--- it is hard to slow down and enjoy the end of school when there is so much that has to be done--- And since cloning is not an option --- I guess we all continue to do it !

We should hear from MSKCC by Tuesday night--- I will call them on Wednesday morning just to be sure --- I am assuming if he is HAMA negative-- we will head to NYC on June 8th ( yes-- his 4th birthday) and be there for a week of 3F8-- Of course -- All of this is based on his HAMA test result--

That is it for now-- Thanks to all that bought a GGG T-shirt--- And to Kerri for organizing all of it--- A teacher had one on at school today and some of the kids said... "I have that sticker on my car!" I also forgot to thank Leslie Ford for printing tattoos--- that say Go Grier Go-- I have seen lots of kids with them on! Awareness is the only thing going to change the outcome of Neuroblastoma--- !

FYI--- if you have not heard yet about this news that will also bring more awareness -

September 13, 2008 will now be recognized as 'National Childhood Cancer Awareness Day' as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).

Happy 'early' Birthday to me!

Grier had his birthday celebration at school today!! As you can tell from the pictures, he LOVED it!! I just wish I had my video camera!!
Sorry for the short update--- but I really have no news to report!

Not much to update--- Everything is going great around here---
We are enjoying the busy time the end of school brings--- I forgot how much we missed last year!! Grier is about to turn 4 on June 8th--- !!! It is very hard to believe!! I still look at him and see a 2 1/2 year old sometimes!! Maybe it is his size!!! Maybe it is the fact he is not potty-trained-- who knows--- But I have a lot of work to do this summer!!

He will have another HAMA test done on the 29th-- We are in the 4th cycle of accutane-- not looking forward to the usual side effects that it brings but we will get through it--

That is it for now---Thanks for checking in!!

We have survived a nice week at home-- busy but very NORMAL!

Our whole house has had allergy issues but that has gotten better so we are so glad to be on the mend-

Grier ( and I ) went to school for two days-- He is gradually getting adjusted-- His teachers are the best and I hope that I can sneak out for at least half a day before summer break!! I have tried to bribe him but it is not working-- he did tell me that Grace could stay with him instead of me-- But I quickly reminded him that she goes to her school!

If you have a second --- check out this blog... Charlotte Smarty Pants www.charlottesmartypants.com -- It is fun to read and I have learned quite a few tricks from it lately-- You will see a picture of me and the kids today-- The picture has a long story behind it-- but the short version is that Hayes was having a "tween" moment! I also answered lots of questions and hope that I raised some awareness for Neuroblastoma and pediatric cancer-- and I answered some fun questions too!

Tomorrow is Mother's Day and I wish all of you a great one-- Our NY social worker told me that everything happens for a reason so enjoy Mother's Day in Charlotte -- maybe I should write a book with her little email comments-- ! Don't worry Diane -- we will enjoy the day and actually everyday while we are at home!!

Just when you think you know what is going on with the new routine!

"There is nothing easy about any aspect of battling this disease.
As parents you have so much responsibility and so little control!"

Yesterday was one of those long days---I was busy making a RMDH reservation and talking with Corporate Angels--When I emailed our social worker in NY about a reservation at the Ronald-- she asked if we were coming for anything else other than 3F8-- I said no-- and asked her if she knew anything about his HAMA test yet-- She said it will be late Tuesday-- I replied saying Tuesdays are long when you are waiting for them to call-- And she said" There is nothing easy about any aspect of battling this disease. As parents you have so much responsibility and so little control! So I just continued to go about my day trying to let go of the control I wanted!

We were waiting for a call from Sloan and hoping not to get a call at the same time!! I know-- does not make sense! But we have always been told no news is good news with HAMA-- if you do not get a call then you are negative-- but they will call if he is positive because you do not need to do the shots-- The "call" comes late-- and most NB parents will tell you you can assume after 6:30 you are negative with no call! So... we left about 6:30-- went to dinner and to watch a Charlotte Christian baseball game--- I checked my messages a few times while I was gone and there was nothing-- I figured he was negative-- BUT wanted to make sure-- so I emailed our NP this morning and she said-- NO-- do not start shots-- we were going to get a call this morning-- Grier is HAMA positive again-- He will be retested in 4 weeks-- He will continue on accutane-- he has 3 more cycles left- So, another lesson in the NB world-- do not ASSUME anything-- !

Now-- I am going to cancel the reservation and flight-- take a deep breath... and change gears a bit because we will be in Charlotte next week and not in NYC!

THANKS!

In about a month you should start spotting Go Grier Go T-shirts everywhere! Although the response wasn’t what I expected, we did sell a total of 201 shirts -- Over $1,600 profit going directly to the Christenbury family. Grier’s battle to keep his body free from Neuroblastoma is ongoing, and the frequent travels to New York are costly. The Christenbury’s are grateful for your continued support. If you ordered shirts, I will contact you when they arrive.
Thanks,

Kerri Norwood

Today we went to our Charlotte Clinic!! Grier did amazingly well with accessing his port--- he screamed for a brief second and our Nurse (Jennifer) was so fast it was over before he knew it-! His counts looked good and Dr. McMahon ( or as Grier says.. 'what man?) seemed to think he looked good too-- He has 3 more days of accutane so some of his skin issues should clear up soon- After the appointment we went to Kinko's to Fedex his blood for the HAMA test--- It will be in NYC tomorrow morning-- And hopefully it will be HAMA negative! We will know by Tuesday night-

We have not been at preschool this week but if all goes well he will go tomorrow--- ! He has had a little cold for the past few days and they have had a virus in the school so we are being careful- I am trying to not be so careful that I kept him in a bubble---

That is it for now--- prayers are needed for all the families dealing with cancer-- and there are lots!