It is Thursday and my expectation of hearing something from MSKCC early in the week was not right--I was getting very anxious and know they are busy but I wanted to know so we could rest a bit!   After many emails to the doctor asking if he has heard anything about Grier's BM and urine tests.... I heard from him today and it said.. "Show no evidence of NB- wonderful!"   I love the fact he answers emails but they are short and to the point-  I think this makes the one year point of Grier being NED ( depends a bit on when you consider the first time he was NED!)-- I am not going to speculate on statistics but I am THANKFUL for the past year-- easy year... HELL..NO!  It is hard to do scans every three months-- and even harder to live 90 days at a time-- but I will take it-- and hopefully we will get better at living at 90 day intervals!  

So-- that is the good news I can share with you all today-- I have almost recovered from the week in NYC-- I know some of you think that is crazy but that week wipes me out-- the stress of Grier's scans, the week of BAD sleep at the RMDH, and the other news around the house and the hospital that always impacts the week-- when someone relapses you feel the fear they feel as well as when you hear the horror stories of insurance maxing out, marriages failing, and families divided because of new treatment plans far away from their home-- and the worst is not seeing a family you knew because their little one is no longer with them.  Reality is tough on 73rd street!

Next week I am going to be on the insurance appeal warpath-- love that time in my day--- but it has to be done!  The funny thing is that I am not appealing NY procedures-- but Charlotte procedures-- The pediatric surgeons in Charlotte make my life crazy because they are not in contract with BC/BS--- and I have to play the game called---"APPEAL"  I think it is crazy that they are the ONLY pediatric surgeons in our area and have privileges at Levine Children's Hospital but make you appeal to get your benefits paid!  I knew when we had the port taken out we probably should have flown to NY to do it-- but I decided to have it done at CMC and play the game-- I am not complaining-- ( well.. I am a bit..) but I am glad I can focus on it right now--  I certainly try not to complain and often joke with people that this blog is the nice version of our experiences-- It is the version that I feel like telling right now-- !

Thanks for all the thoughts and prayers last week-- Continue to pray for cleans scans as we will do this routine until the year 2012~!  

We made it HOME!

We are home-- not much to report other than we are exhausted from waking up so early to head to the airport and the events of the past week-- I am sure  our neighbors  at the RMDH did not love the vacuum cleaner running in our room this morning before 6:45-- oops!! 

Our flight was fine-- Grier was asleep before take-off and he woke up as we were getting ready to land-- He loved reading the safety card-- It was funny to look over and hear him reading all the do's and don't's!  

We got to see the last 5 minutes of Hayes' basketball game-- and had lunch all together-- I ran a few errands and my car died in the deck of Trader Joe's and Best Buy--- ahhh--- welcome home!

Looking forward to enjoying the next 90 days--  I just need a phone call early this week to confirm what I believe I know!

Let me start by saying-- WE ARE DONE WITH ALL 5 TESTS! Yes... we are excited-- it is hard to describe but these are not easy tests-- I know Grier makes them look easy but they are tough to watch him go through and then to add the worry about what these tests may or may not find is EXTREMELY stressful- Ok-- with that said... so far 3 of his test results look good-- we only have an official reading of 2 -- the MRI and the CT-- and they are negative!! Negative in the cancer world is good-- :) The preliminary of the MIBG looks good but the official reading is not done yet-- This is the test that stresses me the most-- I am not sure why because they all can find something-- but this is the radioactive dye that will attach to NB cells and the screen will light up if they are present- We still have no word on the urine test and the bone marrow aspirations-- This will be next week some time-

Grier did great today-- we did have an issue with his IV again-- I think they put in a very small line ( because he has tiny veins!) and it makes things run slower into the vein -- so when they ( or actually Grier ) was pushing his white medicine into his IV -- it was stinging and he was uncomfortable-- also it took a long time to get him to roll his eyes back and become limp--- We have not had this problem before because we have always had a port-- So.. the IV experience is new to us and we need to come up with a better way to deal with it next time.

He had his MIBG at 10-- They brought him up sleeping at 11:30-- and he went straight into the procedure room for bone marrows-- We finally saw him around 12:30-- he was very groggy and grumpy-- Understandably so-- He also received the first round of immunizations-- so he is SORE-- 4 bone marrow sites-- and 3 shots made him slow down today!

We left the hospital and came back to the RMDH -- he was stirring a bit and when asked if he wanted to go to Johnny Rockets for lunch .... he perked up a little and ended up napping the whole way there-- The weather was great-- it felt so warm- 40 degrees and we were able to walk after lunch -- we ended up going to FAO and Grier walked around a bit and got a new tiny cat-- On the way home we had to stop into Dylan's Candy bar-- and then we went back to the Ronald--

Now-- we are beginning to pack-- we will fly home tomorrow at 10-- and should be in Charlotte by noon---

Thanks again for checking in... and leaving notes-- between the blog and facebook I felt very connected! I will update when we get home-- or as soon as we hear more results-

I wish I could start by saying this day was as "easy" as yesterday--- but it turned out to be harder than I ever thought!  

We were excited to have one thing today-- and that one thing could possibly take 5 minutes if all the stars are lined up right--- ! First we woke up and Grier's new question each morning is not "what are we going to do today? but "Are we going to get to eat breakfast today?"  Today I was happy to say "yes"-- "where do you want to go?"  I knew the answer before he even said --- Cafe Luka!!  He was thrilled to get bacon and pancakes--  He made a heart with his bacon ( see picture)

We left there and Grier was singing What's the Wedder (weather) like today?  And it was cold-- We talked about different places to visit-- but Grier wanted to come back and practice his new talent-- "diving catches!"-- And I learned long ago not to force him to go somewhere for the sake of going!  Before we knew it -- it was time to head to the hospital for the "easy' injection--  We ended up having to go up to the 9th floor to get another hospital bracelet-- After that trip to 9 we headed to Nuclear Medicine on 2nd-- and began our wait--- After an 1 and a 1/2 they called us-- and the fun started-- The nurse flushed his IV and it was not working-- so she said to go back up to 9 to get them to look at it-- well.... I knew right then he was going to have to get another IV-- and that is what happened!  Not fun... he got this one on top of his wrist so he is not thrilled!  Th other was under his shirt and he forgot about it when it was covered with his shirt.  We went back down to the 2nd floor and I did not even go into the waiting room-- I was going to be a huge pain--because we were not going to wait again--  we were taken back quickly and off we went over 2 hours later!

Tomorrow we have to be at the hospital at 9:40 for a 10:40 scan-- he will be asleep for it and right after it he will have bone marrows done as well as round one of immunizations!  TOUGH day--- but I can not wait to tell him we are going home the next day-- I know he will be excited-

Here are some more pictures-- we wrapped both hands and told him he was a boxer--- and one of the pictures is Grier talking to Hayes and Grace at home--

Thanks for all the messages-- I read them to him at dinner and he replied back-- just like you guys were sitting at the table!  I probably should have written it down and typed it out--- Next time!   I am looking forward to saying we are HOME--- this has been a long week-

I stayed still!

Grier did great today-- We started out waking up late ( at least for us!!) and then he had to drink his contrast-- He wanted it mixed in blue Gatorade-- And we were prepared-- Jeff put his Gatorade on the windowsill and it was nice and cold by morning!! That sounds crazy doesn't it--  He drank it in record time and said "I do not like THIS blue Gatorade!!"-- not a surprise since he does not know any medicine was mixed into it!  

We walked to the hospital quickly because it was sooooo cold!  After a quick trip up to the 9th floor we headed back down to Radiology-- and believe it or not they took him early-  Since we were going to try to do the CT without anesthesia we were called back early because we were there waiting-  Grier hopped up on the table of the Doughnut machine and put his head in the spot and they put a seat belt  on him and he was ready-- I suited up and I held his hand while the machine took him for a slow ride!! And before we knew it he was done!  It was so fast and nice to get to leave early-  It was also nice not to have recover him from the "white medicine"-  He was very excited that he stayed so still and said it was like the "dumbo" ride at Disney--- Maybe because it is slow and easy!

We walked back and stopped for lunch on the way- it is s cold that we have stayed close to "home"-- we did take Grier to get a haircut-- I know.... but it was something to do and he needed one!

We spent most of the afternoon going to the playroom and shooting baskets in our room-- He did some science experiments today-- a volcano and a catapult thing-- he was more thrilled with the ping-pong table though-

These days have been long-- but we are managing our cabin fever!

We have not heard any results yet-- and tomorrow we only have the radioactive dye injection for the MIBG that will be on Friday--- Grier is most excited about tomorrow because he gets to eat breakfast!! I am trying to figure out something for us to do-- 

That is it-- wow.. it is not even 8'oclock and we are ready for the day to end--- 

ps-- enjoy the pictures again-- ( if you are reading Caringbridge-- they are on gogriergo.com)

A very LONG day

Day 1 is complete!  We started out bright and early because they called and said we could have an earlier time for his MRI-- so we got there and waited-- and ended up getting called back after our scheduled time!  

Grier did great getting his IV-- he was very still and the nurse got it in the first time without using numbing creme-  I was telling Grier how great he did and he said " I stayed still except for my tears-- they were moving!!"  While we were in the procedure room we saw Dr. Kushner for a second and he said he looks good-- and doesn't look like he should be a patient here-- I then told him about our "scare" and he perked up a bit and said that was the right thing to do with the testing in Charlotte--  because you never know

After the IV was in Grier perked up a bit and was not so nervous-- he was very shy at first when some of the nurses were talking to him and our social worker walked by and reminded us all that he has been away along time and is not used to MSKCC like he was when he was there a lot- Ursula called us back to be checked out for anesthesia and she got to see the real Grier--- basically he serenaded her with Twinkle Twinkle Christmas Star, Bears are Sleeping,  and I like to move it-- it was funny!!  We had to tell her all of his ailments and accidents that he has had while we were at home-- and after I watched her write all that-- I said-" maybe it was not as uneventful at home after all!!"

We waited for awhile for the MRI. We passed the time by watching CNN and some kids from the pediatric floor put on a parade around the hospital with their American flags-- We finally finished up around 12:30-- and it felt like 6pm!  

We got back to the Ronald and went to Lenny's ( I know some are not surprised!)-- We tried to walk around awhile but the 17 degrees was making it difficult-- so we came back and played in our room and in the playroom-- Grier made his own soda-- at the activity for the day and drank it all!  He must have had extra carbonation because he was burping all afternoon!  

We start our day of waiting tomorrow at 10:30--- we are not scheduled until 12:30-- so it will be another long day-  He can not eat until after the 12:30 procedure and the only thing he can drink is the contrast--         

Thanks for checking in--- our internet is barely working so it is hard to update-- for some reason it has worked after 8pm both nights-

Hoping for a good week!

We had a great flight to NY with only a minor delay do to too much traffic going into LaGuardia!  Grier is an easy traveler-- 

We arrived in LGA and got into a cab and headed to the Ronald!  It is snowing here and Grier loves it-- he kept trying to eat it!  We ventured out for a quick dinner-- he wanted a piece of pizza from the spot

 around the corner-  We have rearranged the room here-- pushed the two twins together and Grier has claimed his middle spot-- I won't even go into the beds-- they are bad! We are trying to get him to settle down and not worry about tomorrow-- he asked at dinner about getting the white medicine without a "button"-- and I had to remind him of the  IV they did a few weeks ago and he was very upset-- so hopefully we will survive that trauma tomorrow!  We have to be at the hospital at 8:30-- and from the looks of it outside we may be skating the 5 blocks!!! It is going to be treacherous!  He has to be cleared for anesthesia -- and then we will have the first of the many tests-- the MRI of the brain-  

That is about it for tonight- thanks for staying on this journey with us-- Enjoy the pictures I put on gogriergo.com-- they tell the story of our day better than this post!

WOW!! This is my 300th post--- I know it is LONG overdue but I have not been in the "mood" to write an update-- :)

Grier kept us on our toes during the Christmas Break--- you all know about the CT scan and the waiting on those results -- then he developed croup right before New Year's Eve-- and that sent us to our pediatrician's office-- ( which was a good way to ease back in since I had not been there since the day we were admitted in March 2007-- really hard to believe-)  On one hand it was nice to be in a normal doctor's office with all the people waiting in the waiting room coughing-- but on the other hand I was used to a more sterile environment of the Hematology/Oncology office-- I kept looking for a mask for Grier to wear--:)  After a round of steroids-- we had to head back in because he was not getting any better--he had a chest xray and got a different medicine and finally by the weekend he started feeling better and the coughing slowed down-- Whew-!  We were dragging around here that week- But in his typical fashion he was great at the doctor's both times and just rolled with the waiting like a champ!

He started school again and was thrilled-- he could not wait to get back-- He is still singing Christmas songs and occasionally I hear him try to make Twinkle Twinkle Christmas Star into an Easter song??  I know some of you are laughing since you know he sang that song as our blessing for a few meals over the Holiday Break!! 

He had a scooter accident last weekend and again had the "Rocky Balboa" look to his face--- He was doing a "trick" on his 3-wheeled scooter-- hmmm.... I think the next trick is to learn how to catch yourself with your hands when we fall!!  All typical boy things--!!

We leave for NYC on Monday the 19th-- we will be there all week doing a full work up--  Grier is excited to go-- he loves to play the arcade "boat game" at the Ronald-- I am not so excited-- but I will fake it for him-- can not believe he is looking forward to it!  He just goes knowing we are going for a check up with the NY doctors-  We are flying on USAir-- I decided a few months ago not to gamble and wait on Corporate Angels-- Maybe when the corporate world recovers-- I will feel better about that-- But for now I need to know how we are going to get there and when we are coming home-  The weather is going to increase the number bags that we usually take-- We will be packing for COLD weather-- :(  I need to go find our NY stuff that we had last year to keep warm... especially that stroller cover and wind guard!

I will update from NY-- some days there is nothing else to do as we wait for him to recover from anesthesia after each procedure-- we are going to try to do the CT without the "white medicine" and maybe the MIBG-- still not sure he can lay still for that long ( an hour)-- but we will see--

That is it for now-- I will not update until we get to NY on Monday- That will be here before we know it-