Alive, Well, and not too Traumatized...
I am happy to be posting from the wonderful Ronald McDonald House in New York City! We have arrived. Thank you for all of the comments! I have heard that some have had trouble commenting because you need to enter an email address for me. I had to switch to the updated Blogger, and so some things may have changed. I'm going to give you all my email address. Please understand that I may not be able to respond to all emails if I receive a bunch, but I do appreciate reading them. For the most part, commenting on this blog is best if you just have a little something to say, but please feel free to email me if you need a response or want to send something personal that you don't want published on the blog. (Or if you're still having trouble commenting.) Also... if you have sent something to Ellie at any point and have not heard from us please email me... I have had a terrible time keeping track of names and addresses and who has sent what with all of the back and forth to the hospital, but I can do email much better than snail mail. I would love to thank you and let you know how much we appreciate your thoughfulness. (Jill Heins, please email me... I have been wanting to contact you, but don't have your email address.) My email is: "seskees is at hotmail dot com -- please replace is at with the @ sign, and dot with a '.' "
So... where to begin... Thursday we boarded a corporate jet and flew to New Jersey. It was like something you would see on TV, an experience most people only dream about! The fabric covered walls of the plane were trimmed out in dark, glossy wood tones. The lavatory was beautiful and larger than on commercial flights. The aircraft had 6 large leather seats and one sofa (complete with blankets and comfy throw pillows) along with a fully loaded galley. We were seated in the rear in two seats that faced each other with the sofa accross the isle. I actually stretched out fully and took a nap during the flight! John was determined not to sleep, but the cushy leather, fully adjustable seat claimed him and before long he was out cold. (The chair was able to ease out into the isle, swivel, and lean back... so of course he had to play with all of the buttons and such before he could relax.) I woke up once to see Ellie curled up in the plush seat absorbed in her nintendo game. She never even closed her eyes. A bag of catered food was waiting for us, so we pulled out a table between the two seats and enjoyed our meal with all of the comforts of home. We were told to help ourselves to anything in the galley, so mid-flight I made my way forward and firmly planted my feet so as not to fall over and began preparing two cups of coffee for us to enjoy. I wrangled the pot out of it's resting place, only to discover that the base smoothly slid out like a drawer. Then I began to pour, and in the process of trying to keep the lid up and pour carefully AND keep my balance, the hot coffee came out in a rush all over my hand and the cup I was pouing into. Little rivers of coffee started running all over the counter. Inside, I was mortified, but I tried to emulate the suave, unflappable motions of the many flight attendents I've observed in the past. I showed no pain, and smoothly mopped up my mess and salvaged two small cups of coffee out of the whole thing (I was NOT going to even touch that coffee pot again!) I wobbled back to my seat and John's sympathetic smile. The two executives on board were very kind, treating Ellie like a star, and graciously welcoming our family on their flight. We were truly treated with such dignity and respect by each person we came in contact with through the Corporate Angel Network. When we landed, the executives boarded a waiting helecopter, which we thoroughly enjoyed! (We are so easily amused and impressed.) Once the helecopter took off, we disembarked (on the way out, Ellie snagged a cookie from the galley and put it in her coat pocket, quite literally "helping herself"). Melanie drove right up to the plane and all of our bags were loaded and we were on our way. Talk about getting the royal treatment!
You should have seen us driving through the streets of New York. We were quite the tourists, craning our necks to see all of the buildings and people and... everything! It was great. We pulled up to the Ronald McDonald House and actually found a parking place. We were given a tour of the facilities which are so nicely done. They bend over backwards here to make people feel welcome and to make sure that all of the needs are anticipated and met. There is a beautiful living room and play room along with kitchens and a large dining room. We have a very nice room, and I only had to "tweak" the furniture arrangement just a little... :-)
This morning we had our first appointment at Sloan Kettering. Everything here moves so quickly, which is wonderful but a little unnerving at the same time. The doctors were great with Ellie and easy for us to talk with - they spent a long time answering all of our questions. Ellie got nervous when we arrived at the hospital, and she had a really hard time with all of the differences. Even though everyone was so friendly and helpful, it is just different from what she's used to. I know that in no time she will be running all over, greeting people by name as if she's been here all her life. It just takes time. When her blood was drawn (through her Broviac, as usual) Ellie actually threw up. I was so surprised because she hasn't been nausious lately, but she hadn't eaten well this morning and she was so anxious that it all caught up to her, plus they took a quite a bit of blood. There was so much information to take in today, but overall it's been very good. We are continually impressed with the efficiency and professionalism that we see here, both in person and over the phone. It is amazing to be in a place that specializes in Neuroblastoma. Now that we are here, there is simply no doubt in our minds that this is the place for Ellie. (Not that we really had doubt before.)
What is the plan now, you ask? Well... Ellie will have tests tomorrow, Monday, and Tuesday. At some point during the next week or so she will have her stem cells harvested, and then as of now she is scheduled to have surgery on March 14. We had no idea that this would all happen so quickly! After surgery there will be one or two rounds of chemo. The good news is that the drugs used will NOT be hard on her hearing! After chemo, some tests will be repeated to determine how the cancer has responded. Then... treatment with the monoclonal antibody and radiation. So far that is the plan as we understand it. On Monday or Tuesday we should know more. Depending upon the results of the tests, some things could change. Pretty much nothing is set in stone or "standard" when it comes to treatment of NB.
Melanie was able to stay with us until this evening. She just left to drive back to Connecticut. She will be able to come back and forth some. It was wonderful to have her with us for these couple of days! We just looked around the room at each other and realized... we are alone in New York! Deep breaths... try not to panic... I'ts ok, just a little unsettling in the pit of my stomach. You know, the biggest adjustment for me is that I'm HOT all the time. It's so cold outside that the heat is cranked up high inside. I'm used to being cool inside all the time to escape the heat outside. It doesn't help to go outside because it's cold and you wear coats, but walk fast. So by the time you go inside you're hot AND sweaty. Aghhh! I'm not complaining... I just can't figure out what to wear when. Oh well. I am enjoying the cold when I go outside. It's always fun to have a change of weather. It was drizzly today, which was fun because I LOVE a gray, rainy day. It makes me happy. I know, I'm wierd... don't mock me!
I will be posting pictures as soon as possible. It's a little tricky to find the right spot in the house for the computer to work properly... we're trying to learn the ins and outs. I have some good ones of the airplane and plan to take pictures at the R.McD. House. Bye the way... there are fish tanks everywhere - in the house and hostpital!! Thank you all for your love and prayers! We love you.