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, May 31, 2007


I've had a bit of an overwhelming sort of day... I finally just sat down and crocheted as if my life depended on it. (You should see the lovely little throw pillows sprinkled on our couch!) It was nice to have my hands busy and let my mind sort of rest a bit.

Today we began the process of making plans for the next month. We have spoken with Ellie's doctor and have been carefully weighing the options in front of us, and have decided to take Ethan and Ellie out to Montana for about a month once radiation ends. As of the latest tests (before the "light" chemo) Ellie was not yet completely free from Neuroblastoma. Because of that, she will still need surgery and more treatment. It has been over nine months now of treatments for Ellie (with some serious bumps along the way) and we believe that her body needs to rest. Given how hard the last cycle of chemo hit Ellie, and how low her weight is, we feel that she needs some time without treatment... just to eat and get stronger. A huge bonus will be spending some quality time with Ethan. Another wonderful piece of the puzzle will be finally seeing Loretta in person. She has dedicated nearly every waking moment of the past 9 plus months helping us from afar. We cannot wait to see her face to face!

I guess I'm dropping this news on you kind of suddenly, but truth be told we have been thinking about this for a while now. It has been complicated - there have been so many variables - so we have been thinking and waiting and praying... And now we just know... the time is now. For Neuroblastoma patients the focus is always getting their bodies free from this tricky and often treatment-resistent cancer, but a lesser known - but often just as difficult - struggle is getting the patients through the sledgehammer style treatments alive. Add to that Ellie's sensitivities and propensity to develop all of the rare side effects... well, you get the idea.

I realized while writing this that I have been in a down kind of mood (thus the maniacal crocheting spree). I really do believe that we are making the best possible decision for Ellie - there is no doubt in our minds that it is right. It's just that we are at the stage in the game where each good desicion has a potentially worse down side. These are the kinds of choices parents never want to have to make. But we really do trust that God's hand is in this. We don't need to know what's ahead for Ellie to know that this is the step that God would have us take for her right now.

And so Michael and Kathy will be arriving in New York at the end of next week with our little buddy in tow! We are so excited. We will get to see Michael and Kathy for the first time in over three months and we'll get to show Ethan off at the hospital. I believe that we will be heading out to Montana on Monday of the following week.

In other news... Ellie had a very un-eventful first day of radiation! We love the boring treatment days. Now that she's feeling better Ellie has also spent some time with a teacher who helps the kids on the Peds. Oncology floor. Tonight Ellie had a blast doing... homework. Go figure. (She did not get that from me - but don't tell her.) In the middle of the day John and Ellie did a reconnaissance mission to the Metropolitan Museum of Art. They only had enough time to briefly check it out - we are planning to go together when we have more time to spend - but Ellie's been begging to go to see the Egyptian wing. We watched "National Treasure" together and Ellie's all excited about the treasure. They had a blast!

I just have to tell you one more thing. A couple of nights ago Ellie was sitting on the floor with John, putting together a lego project. She looked up with a sweet smile and said "You know, I was just thinking how cool it would be if I grow up someday and have a daughter who has cancer." After staring at her a moment in wordless surprise, I finally stuttered out "Well, sweetie, it's not exactly thought of by parents as a good thing when their child gets cancer, but I guess you would know what it feels like and how to help her through it." She smiled and said something like "Yeah, that's what I meant. Besides, you could teach me how to do the things for her like you do for me." It was one of those perfectly precious times when we could see how truly happy she still is. Sure, she has her "why me" moments like anyone would, but in the end she is able to find a certain amount of contentment even in the midst of cancer. I just thought you would all enjoy sharing that moment with us.

We love you.


At 10:45 PM, Anonymous Anonymous said...

Wow, what a switch..coming to Montana. But, what a good place to come to. What a blessing for all your Montana family to get to see you. I know it must be so hard to make these kinds of decisions and not really knowing what the future holds. I am sure Ellie's little body is crying out for something besides needles, hospitals and endless treatments. And, time with Ethan...sounds like you all need that! I am sorry it is so hard.

I hope we can bless you some way when you are here. If Ellie wants to 'meet' Missy, the mom to Josephine, that would be wonderful. Also, we have horses she can come out and see and some funny, friendly 4H pigs that she can watch wallow in the mud. I am sure your plans most likely include a lot of rest & relaxation and not a lot of running around...so it is completely understandable if you are not up to anything beside crashing at Loretta's and just enjoying R and R. Just know, though, that you have friends here.

Ironically, my husband, Dan, and I are going to New York next Saturday to visit our daughter who is an intern with Metro Ministries in Brooklyn. I was trying to figure out how we could squeeze in a trip to the hospital to pop in a say HI to Ellie. I have no clue about how to even get around...small town girl, I am. Cities freak me out, anyway. But,good for you, you will be gone by then and enjoying some beautiful country and loving family.

God bless you, Sheri in Montana

At 11:29 PM, Blogger BreezieGirl said...

Yay for a boring radiation day! I'm glad y'all will be able to get a break from hospitals and treatments... many prayers that everything will go as planned and that God will help keep Ellie strong and healthy during your time in Montana.

Always checking in and praying,

At 5:47 AM, Blogger LindaSueBuhl said...

Montana sounds like a very good plan - healing is a good thing for body and spirit. Your description Ellie's situation and reactions (I'm still using kleenex like mad - what an AMAZING girl with wonderful family) give those of us praying for you clear direction. If you get an oversupply of those crocheted things - we might work a trade! Bless you and your treasures (BTW we LOVED the National Treasure movie!). Your focus is definitely in the right place and as always - thank you for your transparency and generosity.

At 8:52 AM, Blogger Julie said...

Sarah, You need to read "From the Mixed up Files of Mrs. Basil E. Frankweiler" to Ellie now that she has seen the museum. It is about two siblings that run away and live in the museum. The Egyptian wing is mentioned a lot. I read it to my students every year and they love it. I am glad you will be able to have a peaceful time together as a family away from the hospital. Love you guys!

At 1:36 PM, Anonymous Anonymous said...

what a beautiful girl on the inside and out!!! if that is what you feel God telling you to do then do it. you will have peace. it sounds like a blessing for all of you. we hope you have a wonderful time. would love to sse pictures if you get time. will continue to pray for ellies eating and getting stronger. we pray for some fun and peaceful times ahead. love simons family

At 6:10 PM, Anonymous Anonymous said...

Sarah, will you be driving to Montana? If so you have to go through North Dakota and we would love to have you stay with us on your way.
Dan and Marlys Orluck
We are in Minot, North Dakota. If you remember, your mom was here for our Mission Conference several years ago and we so enjoyed having her here. She was a blessing to so many.

At 6:40 PM, Anonymous Tabitha said...

Thanks for continuing to share from your heart! What an amazing thought Ellie had! :) It's funny how children's minds work - praise God for how happy she really is! I hope her spirits will continue to stay UP - and that she will completely trust the heart of Jesus - no matter what He allows...she's a good example to all of us! :) Tabitha

At 7:31 PM, Blogger oneofhisfriends said...

Dear John and Sarah,

While reading this posting, I realized that if ever I am given a choice between guarantees and grace in this world, grace is the smart choice.

What a God is our God.

Blessed be the God and Father of our Lord Jesus Christ, who hath blessed us with all spiritual blessings in heavenly places in Christ:
According as he hath chosen us in him before the foundation of the world, that we should be holy and without blame before him in love:
Having predestinated us unto the adoption of children by Jesus Christ to himself, according to the good pleasure of his will,
To the praise of the glory of his grace, wherein he hath made us accepted in the beloved.
In whom we have redemption through his blood, the forgiveness of sins, according to the riches of his grace;
Wherein he hath abounded toward us in all wisdom and prudence;
Having made known unto us the mystery of his will, according to his good pleasure which he hath purposed in himself:
That in the dispensation of the fulness of times he might gather together in one all things in Christ, both which are in heaven, and which are on earth; even in him: 11 In whom also we have obtained an inheritance, being predestinated according to the purpose of him who worketh all things after the counsel of his own will:
That we should be to the praise of his glory, who first trusted in Christ.
In whom ye also trusted, after that ye heard the word of truth, the gospel of your salvation: in whom also after that ye believed, ye were sealed with that holy Spirit of promise,
Which is the earnest of our inheritance until the redemption of the purchased possession, unto the praise of his glory.

(Ephesians 6:3-14)

At 1:17 AM, Anonymous Anonymous said...

Praying for you in the down days. Sounds like you have certainly been led by God's wisdom and not your own. Take some time and enjoy your family time together away from the hospital. Much love to you all.

At 9:28 AM, Anonymous Anonymous said...

Our family and church are still praying for you. My children and I have spent so much time praying for Ellie, we feel like we know you!

While you're in MT, if you go to Glacier National Park, our church would love to have your family visit and meet the precious girl and family we've been holding up in our prayers. We're just a few miles outside West Glacier, Canyon Community Church in Coram.
"For He Himself has said, 'I will never leave you nor forsake you' So we may boldly say, 'The Lord is my helper, I will not fear.'" Heb. 13:5-6
Holly Scheidemantle

At 6:01 PM, Blogger Sheila said...

Still praying for your precious girl. I'm so glad that she still has moments of sheer joy. God bless you and your family,

At 8:02 PM, Blogger Whatleys' World said...

Hi you all! :) I am still reading! :) The Lord is good, and I am so thankful for the fun times. What a sweet attitude to want to comfort your own daughter, Ellie, knowing what she would go through. That is certainly putting Corinthians into practice! Hugs to you all and I look forward to hearing how much fun family time you will have in Montana! Yeah!!! :)

At 7:02 AM, Anonymous Anonymous said...

Hi, Sarah and John. You all are still in my thoughts and prayers. It sounds like you're making the right decision for your family for right now. I pray that your month in Montana will be a time for Ellie's body to "catch up" and for you all to be able to do some serious catching up as a family.

Love and prayers,
Beth Nichols

At 7:04 PM, Blogger Jennifer Hall said...

Hello! I just wanted to say that there hasn't been a day since you all came into my office at Arnold Palmer Audiology that I haven't thought of and prayed for Ellie. It sounds like she has been through sooo... much (you all too!). I hope that you will have a wonderful break in Montana and share some quality time together. I will continue to pray and think of Ellie.

This is my very first blog comment ever, so I hope I did it right and you get it.

By the way, how is Ellie's hearing? I hope that it is good and a non-issue for her. Keep on protecting her ears around loud sounds:)

At 3:07 PM, Blogger LindaSueBuhl said...

In praying for Ellie today - I remembered that you might be traveling today to beautiful big sky country. Don't know if you will blog during your respite - if not - please know that we will continue to pray for health, strength and joy for all of you.


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