We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Thursday, July 12, 2007

Sorry for the blackout...

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.


At 4:46 AM, Blogger LindaSueBuhl said...

Your adventures in NYC continue to impress (or is that shock and awe) those of us in the wild west. So glad you are all together and settled in - the saga of the elevator made ME get sweaty and breathe too fast. You are all loved and prayed for by people you'll never know -- may the Lord bless and keep you. thank you again for sharing with your loyal fan base!

At 7:17 AM, Blogger oneofhisfriends said...

Hi Sarah,

Thanks again for reminding of God's grace.

1 I cried unto God with my voice, even unto God with my voice; and he gave ear unto me.
2 In the day of my trouble I sought the Lord: my sore ran in the night, and ceased not: my soul refused to be comforted.
3 I remembered God, and was troubled: I complained, and my spirit was overwhelmed. Selah.
4 Thou holdest mine eyes waking: I am so troubled that I cannot speak.
5 I have considered the days of old, the years of ancient times.
6 I call to remembrance my song in the night: I commune with mine own heart: and my spirit made diligent search.
7 Will the Lord cast off for ever? and will he be favourable no more?
8 Is his mercy clean gone for ever? doth his promise fail for evermore?
9 Hath God forgotten to be gracious? hath he in anger shut up his tender mercies? Selah.
10 And I said, This is my infirmity: but I will remember the years of the right hand of the most High.
11 I will remember the works of the LORD: surely I will remember thy wonders of old.
12 I will meditate also of all thy work, and talk of thy doings.
13 Thy way, O God, is in the sanctuary: who is so great a God as our God?
14 Thou art the God that doest wonders: thou hast declared thy strength among the people.
15 Thou hast with thine arm redeemed thy people, the sons of Jacob and Joseph. Selah.
16 The waters saw thee, O God, the waters saw thee; they were afraid: the depths also were troubled.
17 The clouds poured out water: the skies sent out a sound: thine arrows also went abroad.
18 The voice of thy thunder was in the heaven: the lightnings lightened the world: the earth trembled and shook.
19 Thy way is in the sea, and thy path in the great waters, and thy footsteps are not known.
20 Thou leddest thy people like a flock by the hand of Moses and Aaron.

Psalm 77


At 8:36 AM, Anonymous Anonymous said...

so glad you are all back safe in new york praying for good test results.so gald you were calm in the elevator have to admit i probably would of started to panic. your stories always encourage me. our love to all of you. simons family

At 12:21 PM, Anonymous Anonymous said...

Ellie, I am thinking of you and your long nails and how you are back at the hospital. We loved visiting with you and you were so good with the horses. You are a natural. You have a cool brother.

Sarah, bless your heart..it sounds like a wild time in the city! Between room arrangements and stuck in the elevator, you must be eating a lot of chocolate...if not, you better be soon! hehe just kidding, but, wow, the elevator thing is just panicky. Those, including you, poor people!

We enjoyed your family that last week when you came out for a few hours. The whole bunch of you warmed our hearts. It is so easy to see God's grace & love flow from each of you. You have a real gem in Loretta! And, Lauren, she is awesome. Not to mention little firebending cheetah Ethan. He is the cutest little guy and I am glad he is with you. It was a blessing to meet the author of these heart warming, heart wrenching and beautiful blog entries.

Always thinking and praying for you, Sheri

At 3:15 PM, Blogger Jessica said...

Thanks for sharing! It's glad to "see" you back.

I'm sure your hair looks great & much better than mine - I got so frustrated with mine today I flipped my head over & cute my hair myself! Oops. :)

At 5:41 PM, Anonymous Anonymous said...

We are praying for all of you! Keep leaning on the Lord! Sometimes He is the only One who can hold us up. :)


At 9:30 PM, Anonymous Kristina said...

Praying for you as you get "settled" back in there in NY. The details of your elevator experience.... oh my, can you believe it? Ellie, we are thinking of you and loved the pictures of your hair growing back!
Good night,
Kristina & Alexa

At 2:23 PM, Blogger ~T said...

Praying for you all here in Texas still.

I probably would have been the girl on the floor... but who really knows!

Thanks for blogging!


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