Wednesday, Thursday, Friday in NYC

A NYC favorite-- a black & white cookie!

Here is the update I tried to do while I was in NYC... but the wireless at the RMDH is a bit slow and I was easily frustrated with losing the post once... so I called it a night and did not try again!
I am going to mostly post pictures of the last few days -- easier than trying to describe the events of the 2 1/2 days in NYC...

Grier's work at school on the Wednesday we left for NYC

The "always" hungry Grier said yes to the offer for dinner on the plane!

Wednesday afternoon we flew to Teterboro, NJ-- this was our "luckiest" thing that happened last since the flight does not make us go through security lines and be at the airport a long time.  It was another easy flight and Grier was treated like a king.... see photos! A driver picked us up at Jet Aviation and we had a nice ride into the city and arrived at the RMDH by 8pm.  We checked in... took our "second home box" up to the room... and started to unpack.  We needed to get some water and gatorade for the morning so we headed back downstairs to go to the corner store and to take the luggage cart back to the lobby.  This is where the fun started.... This luggage cart has a mind of its own.. so the wheels were a little hard to steer.. as the elevator doors opened on the 11th floor.. Grier got in first and I was following him with the cart. Well, the cart was not going the way it need to so I backed it up and tried to readjust.. when I did that the doors shut with Grier in the elevator... I could hear the loud "M O M" as the elevator went down... About that time I got a text from our friend, Julie ( Adam's mom)- she was at the RMDH too-- Adam was doing 3F8 last week. She was nice enough to get our brown bag of "goodies" we would need for the next two days to complete the tests.  I told her Grier was on the elevator alone.. not happy and I was headed down to the lobby in hopes that was the button he pushed too--  I went to the lobby... and got the possessed luggage cart out and parked and Grier was not there... so I waited a minute but you could see the elevator was not coming right down... I thought I could hear him... I told the front desk.. that I lost Grier and I was waiting in the lobby... and I was going back to 11 to see if he went back to the room.  Meanwhile I am waiting for two elevators that are slow on a good day... !  About the time the elevator was headed down I got a text from Julie... "guess who I found on 11?" She heard the screams too... so that was our first hour in the Ronald... after that we took the bag went and got water and headed back to the room to make beds and take some medicine.  Doesn't that sound fun???

Lenny's for the first meal of the day at 1:00pm

wiped out after a very long tests of tests and waiting

Thursday morning, Grier woke up early... he main job was to drink "contrast" for his CT... he did a great job with that.  We headed to the hospital and began our other life... the first step is the get his port accessed... he does not like this and it seems to be getting harder because his"button" on his chest is tilted a little... so after that traumatic event we saw some nurses we haven't see in awhile... visited with Adam and Julie before he started his treatment and waited our turn to be see for a check-up-- He was hungry and I was too-- but no breakfast before the CT... A brief summons from the insurance admin-- revealed that BCBS is my second nightmare~ I don't talk about insurance things too much but this part of the 4 years has been a pain in my ass.... as much as I should care I really don't at this point... I am doing all I can to keep my head above water managing a household with 5 people in it... and I don't have time to be the insurance watch dog and get them to do with what I thought was their job... so basically it is my fault as Jeff reminded me when I got home... yes, I should open those piles of bills from MSKCC, BCBS, CMC more often... but I need a few more hours in my day to deal with that- that visit was second to the elevator excitement.... and I basically told the guy I am doing what I am suppose to do... I fill out the forms... Jeff works so we have insurance and I am not in AL paying the claims... he didn't love that response but it is what it is...! You really do not want to hear my whole rant on insurance...
 We finally did the check up and headed down to the CT area to wait... and wait... and wait.... it was suppose to be at 10:40-- but it did not happen until after 12--- and he had an echo scheduled for 12.... we finally did the CT... and headed up to echo... after that we went to have our lunch/breakfast at Lenny's across the street from the hospital because we had to be back for a 2pm appointment.  We had more waiting... and Grier was ready to go.... he finally took a nap while we waited for his nuclear med injection that happened around 3:10--- again... not enough time in between to leave and get out of the hospital because the MRI was at 3:30-- So, after much bribing and negotionating we headed up to the MRI suite to wait some more!! They finally called us back and Grier was very quiet and I had a feeling this was going to be tough... we locked up all of our stuff in the lockers... we were wanded for any metal on us and then headed to the room... he hoped up on the table.. layed down and put his head in the contraption... made some other adjustments so his head would not move during this 40 minute scan.  They handed Grier a button and told him to push it if he had an emergency?? We both had earplugs in because an MRI is so loud... We finally were ready to start... Grier has done these before without anesthesia... so I knew he could do them but we had never done an MRI in NYC... As soon as the first loud sound started.. think jack hammering and high pitched rythmic noises... Grier's lip turned downward and tears were rolling down his face.... I was trying to talk to him but I could not hear myself so I am sure he could not hear me... I was giving him the thumbs up sign.. but it wasn't working... I read his lips and he was "saying I can't reach the Button!" ugh... i didn't want him to push that... we were going to have to start again.  So, I keep doing whatever I could to calm him down... kept saying it is almost over etc... The tech told him he was moving and we would have to do a picture again.... he was swallowing... but we did a few extra pictures... finally the scan was over.... very stressful.... As soon as he got off the table he was back to his chatty self... ready for me to pay-up! We walked to FAO for his reward :)  On the way we got stuck by the end of the St. Patty's Day parade on 5th Ave.... made a few detours but arrived at the toy store.... He found another dog to add to his collection and we headed back to the Ronald... stopped at the Yankee store on the way... as were were walking back to 73rd he says he love to walk around NYC.... well, I said you don't walk... and he said, I know I like to ride while you walk-!"  We left our room around 8:30am and arrived back from our day at 6:30--- we went to see what the St. Patrick's Day dinner was in the dining room... saw Adam and Julie-- and ended up not staying too long... a crowded, loud place was not the ideal spot after our day... so we headed back to the room to chill.... and take the list of meds he needed to take.

something he should not be so good at!

Our "second" home

ouch!

2 of the 4 :(

flying home and fishing :)

Friday am came quickly... we headed back to the hospital at 8 to begin the L O N G nuclear med scan that slowly scans every part of his body for NB cells... He did much better with this quiet scan but he stills hates the part that I have to leave the room for 2 minutes... After that scan was over we went back to the Pediatric Day Hospital to wait his turn for Bone Marrows.... He kept asking when he was going to get the "white medicine"-- aka propafal.... he loves it! We waited a while but when they called us back to the procedure room... Grier was ready to push his own anesthesia... The doc was knew and looked at me liked I was crazy when he asked her if he could push it-- :)  She ended up letting him and as soon as the white medicine went into his port his eyes rolled back and body was limp.  I walked out and waited for him to wake up...

We flew home on the 7pm flight on USAirways with Adam and Julie... and a bunch of other people :)--
Saturday am Grier woke up and was really sore but wanted to play in his soccer game... so with some narcotics on board he got dressed in his purple uniform and played....

ready to play!

That is about all I have for now.... I am very lucky to have a little boy that I enjoy traveling with... and who is a good traveler.... he did great with all these tests... and I had the best support from friends that were in NYC -- I didn't get to see one of them but I could not have felt her presence anymore that I did... she was just a text away... And Julie was my comic relief at times while we both were in the "other" world with our boys.... SO when Grier shows you his new pair of shoes that he chose you will realize he earned them for doing what is unimaginable for kids.... port access, 4 hour urine collection, CT with contrast, echo, blood tests, nuclear injection, taking potassium iodide drops for 3 days (YUCK!) MRI, MIBG scan, and Bone Marrows... in 2 days~

more to come....