Anne, Grier and I made it home from the whirlwind NYC trip last night-We did all that we had to do at the hospital meanwhile trying to spend some time doing some "sightseeing"--- exhausted may be an understatement !! As Anne said -the logistics of the trip went well--- we had a great room at the Ronald ( both beds worked... it was not tiny... and it was quiet). We did not have to do too much waiting... and this work up did not include a MRI so it was one less sedation-- The best was that the Friday bone marrow test got moved to Thursday after his MIBG scan since he was already under anesthesia-- This was huge!!! And would not have happened without the help of a favorite nurse!! The airport travel was the craziest--- the flight there had tons of turbulence and the taxi ride to the Ronald was awful-- The flight home went well-- except we got stopped by TSA trying to tell us that we had too may bags-- ( 3 people.. 3 bags!! she did not count Grier I guess!!)... security went OVERBOARD on our toiletries... and after we finally made it through and repack all our stuff-- we get to the gate and the agent tells us our bag is too big--- So we asked him to measure them and he was annoyed-- he did and then said well.. 1 one too big but he thinks they all weigh more than 40lbs! We finally just told him to check all 3!! I was really mad as I watched people bring bags on the plane that were gigantic-- !! The problem was the flight was over sold and they were asking for volunteers--- thought about it for a second-- but they were going to have to up the offer!!! $300 credit on USAirways was not going to do it! Enough of the logistics--- I know why you are reading this update-- I do know some results and that is the reason it has taken me so long to update-- Yesterday... as we cleaned the Ronald and packed I decided I was going to email and see if anyone could tell me something before we left the city--- It was not 2 minutes after I hit the original send button that I had a response... Grier's MIBG was negative (GOOD).... but his CT shows something....(possibly scar tissue) "slightly enlarged"--- This area has always been there and is NOT something new-- just slightly enlarged. As most of you know I think the MIBG scan is the BIG one --I always worry about that one because it lights up Neuroblastoma-- so negative is good-- nothing is lit up-- But I do know from experience of friends that sometimes a spot does not light up-- He emailed and said that he wants Grier to have another CT in Charlotte in 4-5 weeks-- I am going to get in touch with our Charlotte docs and get this done sooner rather than later-- We do not know anything about bone marrows or urine so we still are waiting on those tests to come back. We are in a holding pattern right now as we wait for more results and figure out how to find our what the something is! Please do not share with children yet-- because this could possibly and hopefully be nothing and I do not want Hayes and Grace to worry for nothing- Grier is fine-- except for the pain from his bone marrows (4) and 4 vaccines he got-- This really slowed him down this time-- He usually does not complain but I could tell by his speed and the way he walked that he was hurting more than usual- I will update as we know what we are going to do first-- Thanks for checking in- Amy
Grier's address in NYC
Grier Christenbury
Ronald McDonald House of New York
405 East 73rd Street
New York, NY 10021
6 comments:
Thank you for the update. Will continue to pray for Grier and you all. Peace to you all
Netha and all
Love, thoughts and prayers will continue to come your way. Nancy Williams
Thinking about you all and praying for your family daily.
The Steppe Family
Am praying for you and your family every day along with all my friends and family.
Sharon And Danny Smith
We were in N.Y.. Had I known I would have followed you. You know Grier thinks I do that. I pray every night. Grier is my number 1 I will just pray a little harder.
Thinking of you and looking forward to seeing Grier at school.
Take good care of yourself.
Lots of Love,
Mary Ellen
I know you are ready for that shadow to be resolved and it will be hard to relax until then. That medical community is a cautious lot -- but me, I'm taking that MIBG result to the bank, it is hard to hide activity from that. And you'd think those airline folks would know when to cut a tiny traveler a break. ARGH. May the school year start with all thumbs up.
Ashley.
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