I am so sorry for not writing. I've been overwhelmed in the extreme for the past two weeks! I have barely turned the computer on. To be quite honest, I've not even known what to write so I've just stopped writing. I'm not sure how to explain it exactly - overwhelmed is just the best word I can think of.
The last week in Montana was spent talking... talking... and more talking. I think that I may have lived a year in that week. We hashed out every possible scenario of Ellie's treatment, etc., and tried to prepare ourselves for what is coming next. I still don't have much to say because it's all so very complicated, but I can promise you that I will share soon. We need to wait for the results from Ellie's tests this week, then sit down with Ellie's doctor and talk.
We flew back to New York on Monday. It was a long, tiring day - but thankfully, uneventful. We arrived to the RMD
House to a very small room with a freshly washed carpet. So freshly washed that walking left squishy, soapy foot prints. We were moved to a larger room, but one that was wheelchair accessible
and scheduled for maintenance, so we were told that it would be a temporary placement. The first room was on the 7th
. floor and the second room was on the 5th
. floor. That was better because one of the two elevators is out of service and it takes a while to get anywhere when you are dependent upon the elevator. Because we expected to move at any time, we didn't bring any of our stuff from storage and didn't unpack the suitcases we brought. Finally last night I couldn't take it anymore, so I re-arranged the room and unpacked. And just like I knew would happen... we moved today! Ugh. But the upside is - a nice sized room on the THIRD floor (yay
) and an adjoining door into Dinky and John's room (friends of ours from our first stay here in NY). Also the same floor as Ellie's friend Lia! We are sitting pretty now. Especially now that we have packed, de
-arranged (yes, I know that's not a real word) and cleaned the old room and re-arranged the furniture
and unpacked in the new room. Tomorrow we get our stuff from storage. On top of all of the logistical snafus, this is our first time having Ethan with us for all of the hospital stuff. But... we are so thankful to be staying in this wonderful house and we love having Ethan with us. So it's all good... just overwhelming. Again with that word - it's a good word. It sums up my life so nicely.
Tuesday we just had a doctor visit, and then no tests until today, so Wednesday was a good chill-out day. Since my hair was dreadfully overgrown (and you know how I feel about my hair) I decided to get it cut. I had been given a gift certificate to an expensive and sophisticated salon, so I got brave and ventured out. I struck out on my own and hailed a cab. I found the building and got on the small elevator with four other people - the five of us fit nicely (we could have squeezed in one more, but not comfortably) - and when it stopped at the second floor... the doors did not open. Someone tried calling on the emergency intercom, but the woman next to me mentioned that the "Super" was out on lunch - I think there was a sign saying something to that effect when we got on the elevator. She immediately called someone to go find him. Have you ever stopped to wonder how you can tell who the most claustrophobic person on the elevator is? Well, I can tell you. (And no, it wasn't me.) It's the one who begins to poke the open-door button... then the number two button... then the alarm button. Then frantically beat on the alarm button. And continue to try the intercom button despite the fact that no-one's on the other end. And then do it all over again. And when someone on the other side of the door yelled that they heard us and were calling for help, the poor young woman sat down on the floor and began to hyperventilate and cry. The woman who made the phone call also admitted to being claustrophobic, but she continued to make calls on her cell. (I was thankful for that, because the elevator couldn't have supported a stampede.) The couple to my left was handling it all pretty well, but the man started sweating profusely - it was getting hotter by the minute. He began punching buttons until his wife waved him off. He also tried to bang on the door and shake the elevator. The rest of the group protested loudly at that point, to which he replied "at least we're only on the second floor". I never felt like the man was panicked - he was simply trying everything that he could think of - you know, the need to do
something. He then got his cell phone out and asked if he should dial 911. A breathless voice at my feet said "oh yes, please call 911 - please
!" and then she started slapping and beating the buttons again. I mostly just stood very still and quiet. I tried to calm the girl on the floor down a little (if there's one thing that I have good experience in, it's encouraging someone to take slow, deep breaths - thank you Ellie!) and lent the man my phone because his didn't have reception, but there wasn't much else I could do. I have no idea how long it took for the doors to miraculously open and the five of us to tumble out in a dis-oriented little clump. It was long enough to push past my initial amusement
, but not long enough for me to call John and bid him a tearful goodbye. In other words
, somewhere between funny and frantic - I think for me that's about 10 minutes. I had already scanned the small box for any signs of opening panels, and had just realized that if it got any hotter I might need to concentrate on my breathing to make it through, and I had only just gotten the thought that I should pray about us getting out. Hmmm... miraculous opening of the doors... I wonder... (By the way, the haircut was fine. It still wasn't a Cece cut, but I didn't figure I would get that lucky. I am convinced that in all of New York there's no one who can compare with Cece.)
Ellie had a CT scan today and bone marrow biopsies/aspirations. She did great! Tomorrow she has an MIBG
scan. And then we wait for results. I'm thinking that by Monday or Tuesday we should have some answers. I will let you know.
Thanks so much for bearing with me during the times when I've been to busy or overwhelmed to post! I appreciate you all so much. I will try to get some emails out in the next couple of days for those of you who are awaiting replies from me... so sorry... Hope you all have a good night! Lots of love from us to you.