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.

Wednesday, July 18, 2007

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.


At 12:35 AM, Blogger Tammi said...

Wow! What a testement to your faith!
I'll pray that the Lord would honor your choice and that those you meet will respect you decision to do what you feel is best for Ellie. Most of all, I will pray that the Lord's will is exceedingly strong in Ellie's life and she will be a testimony to HIm.

At 5:03 AM, Blogger LindaSueBuhl said...

Amen and amen. Been thinking/feeling you were making a move away from traditional medicine and sounds so right. The move may be daunting - but the Lord has paved the way so perfectly. Please do keep this information line open - some of us totally unknown to your family are so committed to prayer support for you -bless you and hug that beautiful girl for all of us.

At 7:24 AM, Blogger Jen Johnson said...

We welcome you home to Montana and can't wait to call you neighbor!!!
The Johnsons

At 8:01 AM, Anonymous Anonymous said...

you are all in Gods hands and you have such a wonderful testimony of faith.I pray for an abudance of blessings for all of you . Be strong and faithful and he will take care of you! we will be praying for all your changes to come, one of my favorite verses "Trust in the Lord with all thine heart and lean not unto thine own understanding, acknowledge him in all thy ways and he shall direct thy paths"

At 8:13 AM, Blogger Mrs said...

We know first hand what it means to leave family and grandparents and go where God is leading.

It's the hardest thing we've ever done. It's also the best thing we've ever done. Also, my children are "closer" to my mom than ever! Love knows no distance.

I smiled when I read you were scared and excited at the same time! God has so much to show you through just this move (much less Ellie's healing). Be sure to drink in every moment of it, as you do so well.


At 8:35 AM, Blogger c.g. said...

Everything Is In Your Hands

Everything is in Your hands
oh God

My past and my present and things yet to come
My days are in Your hands, each and every one
I know You can handle any challenge that I face
You promised You'd be there every step that I take

Everything is in Your hands
oh God

There's nothing too big that You aren't bigger
Remind us again Lord, that You are in control
We know You can handle any challenge that we face
You promised You'd be there every step that we take

Everything is in Your hands
Everything is in Your hands
Everything is in Your hands, oh God.


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

You have chosen the wisest one, the closest friend, the great I AM.

But those who wait on the LORD Shall renew their strength; They shal mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint. Isaiah 40:31

Our love and prayers are with you.

At 9:02 AM, Anonymous Anonymous said...

Wow... It must have been a difficult decision to leave your family. We know that you are close to them all.
We will be praying for all of you and we're thankful we have a way to keep updated on you.

Roger, Debbie & Kaeli

At 10:32 AM, Anonymous Edith - Mema in SC said...

I stand in amazement at your trust in God, your openness to share and the courage you have shown in this fight for your daughter. I look at my granddaughters and realize that Laura knows them so well. She can tell by their cry what is wrong. I have her say, Ana just needs come cuddling, or ask Haley if ahe is feeling kind of sad because of her mood or look. She even knows when they need some quiet time alone. Amazing, I have sort of forgotten how that feels as Matt is grown and a Father now. You my dear have encouraged and strengthened us all, increased our trust in God and our prayer lives.
Is. 41:10
(THe Lord says) "Fear thou not; for I am with thee: be not dismayed; for I am thy God:I will strenghten thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."

God Bless you all as you make arrangements for travel, and bind your family even closer than before.
In SC - Mema Tyler

At 11:58 AM, Blogger Allie said...

I applaud your decision and the courage it took to make it. I'm sure life will be turned upside down for you for a while, but there is a higher good in store. May the Lord bless you richly - and we'll be praying for the logistics of your move as well as the health of Ellie.

At 2:27 PM, Anonymous Anonymous said...

Sarah, John, Ellie & Ethan...
We welcome you with wide open arms and hearts to our home. We pray that God will strengthen all of us involved, including your beloved parents whom you must leave behind.

We are ALL truly upheld by His right hand of righteousness.

Love, Reni

At 2:54 PM, Anonymous Henry and Darla said...

John and Sarah

We know you have made a wise decision and we are praising God for the family and support system you have. Love you guys

At 3:44 PM, Anonymous Anonymous said...

We welcome you to Montana, "god's country" they call it, I live in this beautiful state and if there is anything I can do to help your transition let me know. I think that you will find Most Montanans very gracious and friendly. My prayers are with you and your family.

At 5:25 PM, Blogger Tami said...

Hooray! I am so proud of you for making this decision! Your family will be together...that's HUGE. I'm so glad that you are giving Ellie a chance to get stronger. Your right, your life will never be the same. But I think you will end up with some great memories of the days ahead in Montana. What we see as the end is actually the beginning.
God brings us down a path and directs our steps. I believe that you have put a lot of time, research, and faith into this decision. You'll be okay. You don't know whats going to happen, but God does know and understands why.

At 5:40 PM, Anonymous Anonymous said...

We have been praying for you, crying with/for you, smiling and laughing with you (at times) as we've followed your lives by reading your blog since the first word of Ellie's sickness was made known. Now, having made this major decision to move to Montana, we will continue to pray for you all as you make the transition. As you begin this new journey we will continue to commit you to our loving Father, who makes NO mistakes.

P.S. I have a feeling the road from Florida to Montana will be well traveled by the grandparents! :-)

At 8:21 PM, Anonymous Anonymous said...

I haven't been here for a couple weeks, and honestly...I was really excited to read about where God is taking you. Being able to take step by step with Him is always incredible. I like the title of your post..."The Plan..." because although you aren't aware of the entire plan--you are trusting He is...and He definitely is! That's such an awesome place to be--resting in His plan for your lives. My heart is excited for your family! My continued prayers are with you,

At 4:58 PM, Blogger BreezieGirl said...

I will still be here... watching and praying. I'm not very surprised by your decision, your time in Montana seemed to be filled with joy and a kind of calm that can only be healthful. Best of luck on the beginning of a new journey and many prayers!

At 7:53 PM, Blogger ~T said...

I understand your decision fully and will be praying for John to find employment in Montana. I agree with the post that says the grandparents will travel the roads frequently to visit!!

God Bless~
Terri in Texas

At 7:54 PM, Anonymous Jennifer Wiser said...

Dear Family,

I've read, cried, and prayed over your story and dear Ellie for many months now. I am a mother of a child who has suffered with cancer, its treatmets, and effects, bone marrow transplant and healing through our gracious Heavenly Father. As I read your post tonight, I'm amazed at how good our God is to have shown you the path to choose, and yet to keep the details to Himself. I'm amazed at your sacrificial love and giving. As I read the post to my husband, we said, we pray that while we continue down the path of our new normal with our son, that we too, will continue to step out in faith no matter the direction or sacrifice it takes. That you have made a wise decision is an understatement. Your'e right - to do the homeopathic treatment plan is to give Ellie the best at such a time as this. May God bless you and keep you as make a move that in so many ways will bring blessings, tears, changes, trials, and hopefully, and prayerfully most of all, healing and health for your beautiful daughter. We will continue to pray with you and for you as your journey unfolds.

Love and Prayers from Michigan!

At 12:39 AM, Blogger Sheila said...

I didn't comment before (busy summer!!!) but I really do think you are making the right decision. This is God's call, and you've left it up to Him. That can be so hard, but you've done it! Congratulations on that one. :) I have you at the top of my prayer list, you are in our hearts and minds.

God bless you in this new and unknown (ad)venture!
In Christ,


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