Fell asleep during the first 1/2 of the MIBG

MOM, look outside... another BLIZZARD!~Grier

The Lifesaver when we have a lot of waiting!

Trying out wii JUST DANCE in between football games

We made it home late Friday night...Friday was good.. Grier did well staying still for the MIBG scan-- he actually fell asleep as he listened to his iPod and was covered up in the warm blanket! There is nothing better than a warm hospital blanket! Grier always asks me if we can get one of those warmers for our house. He was sleeping soundly and the tech went and asked the radiologist is they wanted a spec CT.. A more detailed look.. And she pulls up the scan and says yes.. We have gotten these before and I was actually planning on it this time... I had even asked to have Grier's scan in room 1--t is the only room with a spec CT scanner...anyway we weren't in room 1 so I had to wake Grier up and we switched rooms with another child and started the second part of the MIBG--40more mins and this time he did not fall asleep. At the end of the forty mins.. Grier was asking how many more minutes and i was doing everything to stall-- and I look over to the glass room where the techs are and see 3 people in white coats.. Pointing at the screen and I felt the color rush out of my face.. I sat down -- after a minute I asked the tech who they were and she said oh, just scientists! Don't worry-- right.. Easy for her to say... We were done and got our standard good luck from everyone as we walked out of nuclear medicine and headed up to the 9th floor. Grier was chatty and I was still recovering from the moment..we had to wait for his bone marrow aspirations in the procedure room. During our wait we chatted we the Kings from Indiana, Ursula came out and we saw her.. And the first question I asked was about the 3 folks in the MIBG room.. Then we saw Rachel, a nurse who has taken care of Grier since we started coming to MSKCC in 2007-- she used to be in the room when Grier had anesthesia so I asked her if she has seen the scientists before and she said yes...I was feeling a little better..
Grier finally got called back to the procedure room.. I picked him up and put him on the table and he was ready to push his white medicine! He shut his eyes quickly and I left the room and waited. The doctor came over to me as I waited and said he did fine.. And said the MIBG looks fine and nothing jumps out at him but it was not the final report --his CT still was not ready yet.. He said depending on the tests we will have to do something.. Most likely an escalated dose of 3f8-- the vaccine has enough participants in the trial and it is closed at this time.
I continued to wait in the tiny waiting area.. Talked to a Dad that I met. He was from South Africa-- he and his son were here for scans too-- they had been making the trip to MSKCC since 2006-- wow! And I complain about my travel time.... Grier is famous for napping after anesthesia.. They usually let him sleep.. I was waiting a while.. At one time Rachel came out and asked what time our flight was! He finally woke up and we headed out of the hospital. We did not even make it to the elevator before his groggy voice asked if he could take his hospital bracelet off!
We had a quick lunch.. Cleaned the room, packed our rent a box-- and even had time for a quick ping pong game in the playroom... Our car picked us up @ 5-- we headed to LGA and started the process of going home. We landed in Charlotte at 10-- a little delay due to weather... But we slept in our bed and not at LGA!
The rest of the weekend was like normal.. Hard to believe we were in NYC for three days.. Reentry is always hard for me.. Grier is good at it..
Hopefully we will know this week how everything looks on his pictures... The waiting is the longest part...
Our friend, Adam got good news.. as well as Brice, Kate, and Kieran- I am still in shock and numb with Liam's latest news... His family has been such an inspiration to many and brought awareness to this awful disease and it is so unfair that they are dealing with this-- the scary part is we are all one scan away from it.. So much more needs to be done.. More companies need to be involved like GLAD..money needs to go to research and families fighting for their children need to concentrate on them.. It is too much to have to raise money for a cure and fight for your child -- more people need to decide kids are a priority ... It is time to change...just like the world changed when it was cool to be "pink"-