More Adventures in Paradise...

It's official. I have now graduated from princess to she-woman, wrangler of burros. There I was, standing at the fence as Loretta and Ellie went in to feed some hay to Dream, the horse and Jenny, the burro. Ellie was trying to wield the wheel barrow without letting Jenny out, so I helped her in and jumped back into the gap that stood between that burro and the wonderful and tempting great beyond. (Now to get the full mental picture here, you must know that I was dressed for an outing - taking Belinda to the airport - and was wearing a flowy long skirt and sparkly flip flops.) As I stood in said gap and reached for the gate, Jenny just kept on comin' out. Loretta and Ellie were yelling at Jenny and when Reni saw the commotion, she took off running towards me. I thought blocking the gate would be enough, but that burro was not in the least bit intimidated by me. So I grabbed her around the neck and dug my feet into the ground. She stopped and there we were - she was leaning hard to get out and I was leaning hard in the opposite direction. As the thought flashed through my mind that I must be crazy to think that I could out-shove a donkey, Jenny's hind-quarters rotated around. I still had both arms around her neck but felt at even more of a disadvantage because now I had to pull. I remember looking up and making eye contact with Loretta and thinking "what on earth am I supposed to do here - pull this crazy animal by brute force into her pen?" I must have gotten my answer from her face somehow because I pulled and heaved and that burrow went in the gate! Loretta gave a mighty shout and said "you finally cow-girled up!" And then everyone howled with laughter. I slapped the dust off my hands on my pretty green skirt, and as I looked down at my sparkly flip flops... a bee stung me on the butt! I'm telling you - these bees have it in for me. It's one thing if I had sat on it - even I couldn't blame the bee then - or leaned against it, or had been flapping around the yard like a chicken. But I wasn't. I was calmly standing still, minding my own business. What is that about? Reni and Lauren each tried to shake my skirt just in case it stung from within my clothes and not from without (is this sounding familiar yet?) while I hopped around saying "owww, owww, owww..." After being doctored up (I'll spare you the embarassing details) we took off for the airport. I think I may have gone down a bit from the lofty height I had gained on the toughness scale when, for the rest of the evening, I whined and whimpered every time I sat down or slid off the truck seat. And just for good measure, I throw out "my butt hurts" to the room at large... just to make sure that no one forgets... What can I say? I'm a work in progress.

Settling In...

Hello everyone! Ellie and I are settling into life in Montana, while John and Ethan have arrived in Florida. No more traveling - at least for Ellie and me... at least for a while... yippee! It feels nice to be finished with the dreadful rythm of packing and unpacking. Poor John gets the task of sorting and packing our house. I feel for him - I really do - but still not enough to wish I was there helping. I am so tired of "stuff". I have decided that if I can't remember things enough to miss them, then I don't want them hauled all the way out to Montana. Plus, we've already brought more than enough stuff from New York. I love the idea of starting with a clean slate - other than the basic framework of furniture...

Ellie continues to feel well. We stopped in Virginia to see a Homeopathic doctor. We are waiting for him to compile all of the information to determine the specific "remedy" (in Homeopathy, medicines are called remedies) that Ellie needs to take. Then her treatment will begin. I plan on putting together an explanation of Homeopathy for those of you who are unfamiliar with it, and how it works. But not today. My mind is still a little mushy from all of the travel, etc.

Thanks so much for your prayers as we traveled. And for your patience as I took my time getting back to you - thank you! We love you all, and will continue to be in touch.

Heading out in the morning...

Just wanted to let you all know that we are leaving NY tomorrow morning! I don't think that I'll be able to get on and update until we get to Montana - probably Wednesday night or Thursday at the soonest. Just wanted you to know what our schedule was and not to expect to hear anything until then... Thanks so much for all of the support and well-wishes. We are excited to be on our way. I'll let you know how it goes. Love you all!

Chloe Agnew sings ''The Prayer''

We just love this song from "Celtic Woman, A New Journey". It seems kind of appropriate right now...

Thanks!

Just wanted to thank you all for the sweet comments. We can feel your love and prayers - and we thank you from the bottom of our hearts!

John went on a long bike ride early this morning with a couple of dads here at the house, so this afternoon while he rested, Ellie, Ethan and I were able to go to a show. Sometimes the RMD House gets tickets to special events and today a huge bus took a bunch of us to a bubble show. It was incredible. A man who has spent over 20 years studying and working with BUBBLES put on a beautiful show. Just watching the amazing things he could do with bubbles was mind-boggling. I was in awe of how peaceful and mesmerizing it could be to watch... bubbles. Ellie had a blast. Ethan mostly just wiggled and loudly asked "Is it done yet?" every 5 minutes. When they asked for volunteers, Ethan stretched his hand as far as he could and bounced up and down, hoping to be picked. He wasn't. But all of the kids who were picked(except one from Greece - who was from our group)said that they were from "America" and the man would roll his eyes and laugh. I reminded Ethan that if he was picked, to say that he was from Florida. He said "but Mom, my name is 'Duma' and I'm from Africa." Of course. Kind of a shame he wasn't picked. I also enjoyed looking at all of the stores to and from the show. One store in particular gave me a chuckle: "Daffy's - Clothing Bargains for Millionaires." That just sounds wrong on so many levels. Anyway... I was amused, and I like to be amused.

Goodnight all. We love you and thank God for your care and support - we would not want to do this without you!

The Plan...

Thank you all for your patience with me. This was a long entry to write and I wanted to make sure that I could fully express all of our decisions of late. I put out Ellie’s test results earlier today because I honestly didn’t know how long it would take me to finish writing this one… and I didn’t want you to have to wait that long.

I know that I hinted at some changes to come in one of my more recent posts… well “change” may be a bit of an understatement. The reason that I was offline at the end of our Montana trip, was due to the extensive hours we were spending discussing all of the options for Ellie’s treatment and care.

Those of you who have been following Ellie’s story since the beginning (and the new, brave among you who have spent countless hours reading to catch up) know the kinds of hardships that Ellie has faced with drug sensitivities, sickness, and setbacks. We took the month of June off to try to get Ellie stronger and better able to withstand future treatments, but what we discovered is that one month was not nearly enough to truly give her the strength to make it through any more invasive treatments. After one month, Ellie gained about two pounds and her counts ever so gradually and sluggishly began to climb. To put it bluntly… her body is worn out. That is not to say that she doesn’t look great and full of energy – she does. But that is one of the most frustrating parts. When Ellie feels good, she bounces off the wall, and right now she feels better than she has since before her diagnosis. But one more thing will put her over the edge so quickly, the doctors will not even see it coming. Why can we see it coming? Because we are her mom and dad. That’s what parents’ do – they know their children. I know in my deepest of hearts that she cannot take this anymore. I’m not saying that this kind of medical treatment is wrong or bad. We have tried it – and it has gotten Ellie this far. For that we are so very grateful. And given the choice to do it again, I don’t believe that we would have done anything differently. And I’m not even saying that we are walking away forever. We don’t know what the future holds, and we are not going to make any claims about what her treatment will look like in the days, months or even years to come. We talked with Ellie’s oncologist today, and he would like to repeat the tests here in NY in two months. We will continue to have her monitored very closely to track what is going on in her body.

What will we do? Our plan is not to fill the void with a vacuum – close our eyes and pretend that we are on vacation - but it is with great purpose and dedication that we will pursue Homeopathy as Ellie’s current treatment. Homeopathy is an alternative treatment with which we are very familiar and comfortable. We have seen dramatic positive results over the years using Homeopathy with both of our children, as well as ourselves and other family members. We have a trusted Homeopathic doctor who has been helping John’s family for over 25 years. I tell you all of this, not to say that there are any guarantees, but to let you know that we have a well-researched and thought out plan. In the world of Neuroblastoma, there are no guarantees. We have recently heard of some sad stories of violent relapses in children who have done everything that was recommended in the world of allopathic medicine. And there are some wonderful success stories. There are just no guarantees. I’m not suggesting that any other parents follow our lead. This is our path to follow for Ellie. We welcome everyone to watch our journey. Watch and pray.

And this brings me to another change. Because of our commitment to Ellie’s new treatment, we will be relocating, as a family, to Montana. We have looked at all of our options, and what it will take, realistically, to treat Ellie homeopathically. The truth of the matter is that we need Loretta’s help. She has already put her life on hold for nearly a year to help us in countless ways – always from Montana. When we approached her about taking us on in person, indefinitely, she graciously agreed to “keep” us. While making this decision to change treatment plans, there really wasn’t a choice between doing this at home or Montana – it was “if we do this, it must be in Montana.” I don’t know how to fully explain this to you, but in order to give Ellie what she needs at this time, we need to make a complete life change. And we need help. We intend to give this a 100%, concerted, all-out effort. But we cannot do this alone. The world of Homeopathy is complicated, and we owe it to Ellie to give her the best chance. Working as a team with Loretta will give her the best chance.

I’m sure that you have a thousand questions… There are many logistical details that are yet to be determined. John’s parents are driving up to NY this week to get us and our stuff. We will drive to Virginia where we will meet with the Homeopathic doctor. Loretta will be flying in from Montana for the Tuesday appointment. John and Ethan will continue on to Florida with Stan and Pat, while Ellie and I will fly out to MT with Loretta on Wednesday. Ellie and I will stay with Mike and Reni (Loretta lives on the property) until we can make more permanent arrangements. John will get rid of most of our stuff in Florida and only pack what we know we will need. He and Ethan will drive out with some of his family at a yet-to-be-determined date.

The decision to move has been heartbreaking, particularly for me. I do not like it when my world is turned upside down. I love my family and friends beyond words. I love my house. I loved my life. But the truth is - my life will never be the same again. I will never have the life I had before, but by the grace of God, it may even be better. The decision to take the children away from their grandparents was the hardest of all. But people move for many reasons, and we’ve come to realize that our daughter’s life is the best reason of all. For now… I’m overwhelmed and tired. I’m scared. I’m sad. I’m also a little excited. Feelings can be fickle. Most importantly, I have peace. I know that this is the best decision that we can make. I know that it is right and good. I feel like our little family is standing in a small room with two doors. One door has a red light on it and the other has a green one. The choice is obvious, but when we open the one with the green light, we can’t see anything. None of the details of what we will experience are visible – even down to where we will live or where John will work. The only direction that we have is “go.” So we will go. I am reminded of a quote that I put on a much earlier blog entry, but I believe that it bears repeating… if for no other reason than for my own poor heart:
I stood with the man at the gate of the year and said to him “give me a light that I may tread safely into the known.” And he said to me “put your hand into the hand of God and step out into the darkness. That shall be to thee better than a light and safer than a known way.”

And somehow, when one’s hand is in the hand of God… nothing else matters.

Results...

Hi everyone. Thanks so much for praying. The resutls of Ellie's tests show that the only remaining NB in her body is a very small amount in her bone marrow. The spots in her legs show no disease present! We are so thankful that there has been improvement, even if it is not a 100% no evidence of disease. I will post again to let you know the plan... I only had a small amount of time at the moment and know many of you have been on pins and needles awaiting the results. Thanks so much for praying. I will post again tonight or at the very latest tomorrow with our plans!

We have an appointment.

We will meet with Ellie's doctor tomorrow at 1:00 p.m. to talk over test results. We are nervous and excited. I usually hazard a guess as to what the results will be, but this time I feel curiously open. I don't think that anything will surprise me. It may be that there is no evidence of disease, or she may still have some left. I hope that there is not more than before we took our break, but... we just don't know. Right now Ellie feels better than she has felt in so long. It is great to see her full of energy and life! I will be sure to let you know after we get the results tomorrow.

No news...

Just wanted to let you know that we have not heard back about any of the test results. We are hoping that someone will call tomorrow and set up an appointment for us to speak with the doctor. I will let you know for sure when we know something! Thanks for praying.

Happy Feet Heartsong(Gloria Song)

This is the clip from "Happy Feet" that Ethan was immitating. It is the second song by Gloria. He doesn't know the words, so he was just humming except for the word "penguin". But you can see what he was trying to do!

It's all about Ethan!

Just thought you might like to see a little bit of our boy. He's so funny. When we were first in Montana, Ethan kept trying to figure out what was going on... where are we now... where is home, etc. He started saying "Daddy, when we get back to our home in... in..., you know, on earth..." Poor kid - he just wants to go back to earth! Back in NY, we were walking along and Ethan picked something up off the sidewalk before I could stop him. As he threw it into a puddle I saw that it was a cigarette butt. I told him not to pick things up outside because they are dirty and he said "but Mom, it was just a dead crayon."


And for tonight's entertainment... (Ellie just watched this clip and said "you should send this to 'The Planet's Funniest Animals'".)



Grandma Lois - this one's for you! Ethan loves to imitate the movie "Happy Feet". I've never been able to get it on video until tonight. Enjoy!

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.

busy...busy...busy...

Sorry for not posting. Things have just been crazy these days, but I still have been unable to pin the kids down to take video. I'm sure they must be doing cute things occasionally, but I haven't been in the right place at the right time. Just wanted you all to know that we are still alive and kicking. The days are flying by now. We leave for NY on Monday and will spend Tuesday through Friday at the hospital for tests and appointments. I will be sure to let you all know how that goes. We are praying for good results.

Just wanted to check in and give you all my love!