Day 2 of 3F8

We got a decent nights sleep last night-- Grier had pain in his legs and he got 2 doses of Dilaudid -- After the second dose at 12:30am - he slept peacefully--

He got up this morning and surprisingly he was back to his old self-- He was ready to go to clinic-- after a shot :( -- And I was in total shock-- I could not believe there was no baulking at all to go back to the PDH-- We got there -- hit the juice machine-- he loves that!!! And made him a bagel-- Still amazing to me he went right into the room that we were in yesterday-- The nurse came in and hooked him up to the IV pump and we were on our way --
They started the antibody and he was fine until the flush-- it takes 30 minutes for 3F8 to go in and then it flushes for 20 minutes-- All of a sudden you see him stare-- then his heart rate starts to increase.... his face turns red and we hold oxygen on his face and massage his back, legs, or tummy with hot packs-- He has learned to blow- out to help with the pain-- This lasts for about 15 minutes-- but it is a long 15 minutes-- Today was a bit scary-- they gave him 2 rescue doses of Dillaudid-- They gave him a third and all of a sudden his heart rate was going down from 180-- and I thought the bulk of the pain was gone.. but then he fell asleep and I saw the O2 rate drop-- from 99-71...then 67-- I moved out of the way and the nurses took over-- They gave him a shake-- woke him up and made him cry to take a deep breath-- Scary! Actually more scary now that we are not in the midst of it--- the nurse was very calm-- and knew what to do-- I really think since she was calm that made us stay calm--- I asked her about it later and she said she was calm on the outside-- but she was nervous on the inside but knew what steps to do if the "shake" didn't make him take a deep breath! Needless to say-- EVERYDAY is different!
Grier is doing well-- he has an EXTREMELY high pain tolerance--- and as they say " he internalizes the pain!!!" He is not a huge screamer-- and it makes it hard to know exactly how much pain he is in--- The heart rate is my key-- it goes high -- 200 again today-- but came back down in the 130's quicker that yesterday!
Today I could not help but wish that people that vote on funding for pediatric cancer research would come to MSKCC and watch and listen to this treatment-- maybe more than 3% **of the total cancer research funds would go to find a cure for kids with cancer-- I am not saying we would not choose this therapy again---We certainly would since the options are slim to none--!!

**The National Cancer Institute's (NCI) federal
budget was $4.6 billion. Of that, breast cancer
received 12%, prostate cancer received 7%,
and all 12 major groups of pediatric cancers
combined received less than 3%

Thanks to Kristine-- The dinner you sent from Mezzaluna was great-- ! Also thanks to everyone who writes on the site-- either www. gogriergo.com or caringbridge-- it does help the time pass by reading them!! You would not believe how many people check their messages at the hospital all day while they are there on their caringbridge site or their website- Thank you for those of you that have made dinner for the "charlotte christenbury's"-- And thanks to Derann and Jeanna for helping to organize the help for us! It takes a village to keep up with the schedule we have been living since March--- Can you believe Grier and I have not spent more than 2 weeks a home at one time since March 27-- ? I am hoping soon-- we will be home for longer periods of time- OK--off to watch American Idol-- thanks for the reminder, Grace!!!