13 days later-----

It has been 13 days since I last posted a blog-- that is a lifetime when life is moving as fast as it has been lately.........

I am going to try to catch everyone up. All three kids ended up getting the H1N1 shot and it was not that bad--- they actually did great even Grier-- he did not scream nearly as loud as he does for the shot I give him-- After we finished, Grier wanted to go to school so we took him. Hayes and Grace had a day off that day-- Grier and I ended up not having to fly to NYC on Wednesday-- which was a good thing-- but made life chaotic for a whole week-- I was actually really glad partly because of the bad weather we were having and I had not been feeling great-- The radiation simulation was still pending approval with insurance so it was decided we would just worry about it when we got to NYC on Sunday-- We had a corporate angel flight scheduled for Sunday morning (8am) so at least that part of the travel plans worked out-- or so I thought that week!!! Saturday night around 8pm we were at home and packing with the help of my mom because I was feeling bad-- I was trying to rest and not stress.... and the phone rang--- Yep- Corporate Angels called and told me the flight in the morning had been cancelled-- and we would have to make other plans-- so there went controlling the stress--- I booked last minute tickets on USAIR for Jeff, Grier, and me-- we left the next day for NYC around 11--

We only booked a one way because plans were still up in the air about when we were going to fit in the simulation and start radiation 2x a day.

Monday...... it was definitely a MONDAY--- we woke up and got ready to get to the hospital to start our week of antibody treatment... 3F8-- again I was not feeling great but kept going-- We walked to the hospital around 8 and 3 blocks into the walk I was feeling weak and faint-- so I bought a banana from the "guy" on the corner--- we walked 2 more blocks and got the the corner where MSKCC is and Jeff looked at me and said "Are you going straight or LEFT????" Well-- straight was MSKCC and Left was NY-PRES ER--- I had tears in my eyes and said LEFT I have to know what is going on-- So we went our separate ways-- he took Grier to Sloan and I went to the ER--- I can laugh about it now--- but at the time it was not funny--- After a quick visit in triage and an EKG I was sent back to some area in the ER--- basically I was having heart palpitations and my blood pressure was up and down--- The doctor gave me attivan and I never saw them again until 4pm when he told me to go back to the Ronald and try to avoid stress--- This is the short version--- but I did leave and ended up running into Jeff and Grier as they were walking back to the Ronald as well--- Grier and Jeff did great at the first day of 3F8-- he had lots of help from the nurses--- I knew they were going to be in good hands!

The rest of the week went like any normal day of 3F8--- lots of pain, lots of narcotics to control the pain and lots of hives-- Grier also slept A LOT--- most days he did not wake up until 6 or 7 pm-- Jeff left to come back to Charlotte on Tuesday afternoon and my mom flew in to help with the rest of the week. On Wednesday , Grier ended up needing a blood transfusion so after 3F8 was finished he was transfused with blood. We also had the radiation simulation appointment after the blood was finished... so around 3pm he was waking up from all the premeds and we were going to radiation to make the mold and do the measurements they needed to start treatment... it was a 45 minute process-- he had to lay perfectly still on the table. Two years ago, when we did this he was asleep but this year we thought he was old enough to stay still. He did great but it did not start out so well... he was very upset and after we got him calmed down the process was complete- We got to go back to the Ronald and rest and finish sleeping off the Dilaudid. So, that was our crazy week of 5 days of 3f8 and radiation simulation.

Thursday afternoon Sloan called and told me that radiation would start Dec. 1st--- which was good news. It meant we could be home for Thanksgiving. I made last minute reservations again and my mom, Grier and I flew back to Charlotte on Saturday. We ended up leaving things in our room because my mom made a trip to bed bath and beyond to get some mattress pads for the beds and other things the RMDH is lacking-- The flight home was a little easier because we were traveling a little lighter-

Grier has felt great since we have been home. He is able to go to school 2 days this week. Grier was able to play in the last soccer game of the season--- all of his teammates were great! He had a great time and scored two goals and got his trophy-- he was a little confused because he wanted to play more games but the trophy made up for any bad feelings!!

That is about it for the update-- sorry I did not update last week... I know I have missed a lot-- but did not even open my laptop for the first two days and then when I did the RMDH did something new with their wi-fi so I have to request access--- I have it now so I will update more often when we go back on the first- Our plans right now are to stay until Dec. 19th-- my mom is flying back with us and then we will go from there. Radiation is twice a day for 7 business days. The next week he will do another round of 3f8 --- but as we all know this could change--

This week at home will be spent doing some normal stuff, enjoying Thanksgiving and recovering ( Jeff has been sick too!!)--

Thanks for checking in- see pictures below or on gogriergo.com

Amy

ps--- I am going to post about an exciting event happening in Charlotte-- Some parents from the Weekday School have organized two bake sales to benefit Cookies for Kids Cancer-- They are asking for lots of volunteers so please be on the lookout for the next post about it-- Reid's and Blackhawk have been kind enough to allow them to set up in front of their stores-- they also have lots of bakeries around town donating goods for the sale-- all they need is some man power--- I told them I was sure we could get people to help so PLEASE volunteer-- more to come soon-