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, November 15, 2007


Thank you all for your wonderful words of comfort and encouragement! They have been like balm on our hurting hearts. To be honest, John is usually so busy that he doesn't often read the blog, but last night he read what I wrote and then every word of your comments. It has been difficult for him to go to work every day and leave Ellie behind, but I hope that your words are resounding in his mind as he works this morning and bringing him comfort. As of tomorrow, John is off work for a week and he is wanting to plan some special things to do with Ellie (along with the special impromptu moments that happen when you least expect them).

My brother, Chad, just arrived for a couple of day's visit. We have not seen him for almost three years, and his memories of seeing Ellie in person are of a five year old. We wish that Janeene and the boys could be here as well, but it was a quick trip and not one that could easily be made with a brand new baby. The kids are thrilled with their Uncle Chad, and have been trying to talk him to death! When Ellie first saw Chad, she put her arms around his neck and didn't want to let go. After staying that way for a long hug, they pulled apart and then Ellie grabbed him again and didn't want stop hugging him. She had the sweetest smile on her face.

Once again we are calling upon Melanie to come in and guide us through deep waters. She arrives from Connecticut tonight. We are coming to the point of needing Ellie's port to be accessed to help deliver fluids and medicine, and beyond the physical know-how, Melanie knows what the end looks like and can be immeasurable support in that area. We are so thankful to have her knowledge and wisdom around the clock, and we realize how blessed we have been to have Melanie walk through this with us!

The medicine that Ellie is on is helping her. When it is timed right, she spends most of the day pain free and has slept beautifully for the past two nights. We had a visit from a Hospice nurse yesterday, and she was wonderful! She was able to help us do some planning and gave us an understanding of things that we needed to know. One of my questions had to do with the confusion of seeing Ellie feel so good while knowing that she is probably seriously declining. Her answer made such sense to me and enabled me to wrap my mind around the process. She called this kind of false sense of well-being that Ellie is feeling a drug "honeymoon". She said that it can last even a month (give or take) but that there's no real way to know how close the end is. But then she went on to talk about being tuned in to Ellie's mental/emotional state as much as the physical to gain clues as to the timing of her death. She said that often a person will have such a will to live that they will hang on longer than anyone thought possible, given their physical state. But also the opposite can be true. She said that sometimes you will start hearing the person feel as though they are just too tired, and don't want to fight anymore, and they are often able to let go before their physical symptoms might determine. This explanation helped me so very much, just because I will be able to be prepared as the time gets closer. I know that as you walk this journey with us, you will feel the difficulty of waiting and wondering as we do. I hope that knowing some of this will help with that uncertainty, and I will let you know the "clues" as I find them...

Ellie is doing pretty well emotionally, but as of last night we are seeing some uncertainty and a little anxiety. She very well may be feeling those first glimmers of preparation in her heart that all is not as she had hoped. Please pray for Ellie's little heart, that God will prepare her in His perfect way and perfect timing. And please keep us all in prayer that we will have the wisdom to make this final journey as peaceful and free from fear as we possibly can for her. This is the last thing that we will be called upon to do for Ellie, and we long to do it well!

As always, your love and support mean everything to us. I don't know if you will every know how blessed we have been by your love!


At 9:49 AM, Anonymous Anonymous said...

As always your strength and faith humble me. Thank you for your update and honesty. We will pray you and Ellie through this final journey... you are not facing this alone. God bless you, precious Skees family. I pray you will be able to build some special memories in these days. I am also praying for the Lord to strengthen your relationship as a couple during this time.

At 10:49 AM, Anonymous Anonymous said...

I too am humbled by your faith and your strength through this time. I heard of Ellie the first time on Tuesday of this week and have been reading your blog for two days. Ellie, as well as the rest of your family are on my heart. You all are in my prayers.

At 11:00 AM, Anonymous Nikki White said...

I met Ellie in the airport, you were flying from NY to Montana I believe! I have wanted to post for a long time but had lost the card and picture that Ellie gave me. I now have it posted by my computer and can check in as often as I like.
I hope she remembers us... she sat with me and our puppy Bello while waiting for our flight to MN. I have the picture of your whole family right next to my desk so I see you often. I pray for your family... you touched my heart that day in the airport! I'm sure you have touched many others along your painful journey!
Nikki and Bello
PS David and I are engaged to be married August 2, 2008!

At 11:12 AM, Anonymous Wendy (Harkness) Riedel said...

Just wanted to let you know that our prayers are with you. If there is anything we can do for you please let us know...California is not that far! We would love to send a care package for the kids if we could get an address. Just have your mom (Nancy) call mine (Sandy)and let us know. My kids are wanting me to write and let Ellie know they are praying for her. John (6) Hannah (10) Amanda (14) Brent (17)

May the peace of God surround you!

All our love...
the Harkness and Riedel clan

At 12:15 PM, Blogger Matt, Laura, Haley and Baby said...

God has used you guys to inspire me to be the kind of parent that you are to your kids. To give your sweet daughter over to the Lord's hands has brought you peace, not pain, and that is a huge testimony to me. Thank you for showing us what it looks like to truly trust God with your children. We will be praying, of course for Ellie, but also for Ethan during this time.

At 12:47 PM, Anonymous The Lynch Family said...

My dear friend Kathy Tobin sent me your blog and shared your wonderful and inspiring story with me. My wife and I are two of the rare people that can say we actually know what you are going thru as our son Jack fought NB for nearly 4 years and lost the battle a year ago.
A year later now, it is a very tough road that you will get down as well. Lean on your faith, friends and family and dont be afraid to ask for help. My wife Dianne and i are here for you both anytime you need to talk or vent....if not, we wish you all the strength in the world to get thru this. We are thinking about you all and have you in our prayers.

At 12:54 PM, Blogger Michael said...

We have been reading your blogs regarding Ellie's condition for many, many months and have been praying all the way. Ellie and the rest of the family have been on the prayer list at our assembly in South Florida, Boulevard Bible Chapel, for many months as well. You all are still in our thoughts and prayers.....
Michael & Jessica Renth

At 1:08 PM, Anonymous Anonymous said...

There are no words, our hearts break for you.
We are praying for you all.
The Stones in Sanford

At 1:09 PM, Anonymous jill g said...

Sarah and John,
Words fail...
There is absolutely no way for the world to understand the depth of the riches of God's grace...Thank you for showing us a little bit of what it looks like.
Eternity in heaven...what a great plan God had! And what a high price He paid so we could enjoy it!And how hard it is to be 'left behind' for awhile...
We miss you so much here in FL. So glad for the haven you have found there.
Much love and prayer,
Jill Goring

At 1:26 PM, Blogger ann said...

Your courage, faith, and peace inspire me to be a better person and mother.

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

John, Sarah, Ellie- we love you and are praying much or you. Thank you, Sarah, for sharing your heart. We know this is a difficult time and you are in our hearts and minds.
Love you, The Bader Family

At 1:45 PM, Anonymous Anonymous said...

We are keeping your whole family in our thoughts and prayers. My heart goes out to you.....I am so touched by your spirit, strength and grace as this part of Ellie's journey unfolds. Ellie is very lucky to have you.

Warm regards, Sharyl Proscia (Cooper's mom....we met this summer at RMD)

At 1:50 PM, Anonymous Anonymous said...

Hi my darling Ellie,

I'm sending my love, the biggest hug ever and my deepest prayers to you!!! I wish strength and guidance for your mom, dad, and brother. XOXOXOXOX your friend Maria

At 1:52 PM, Blogger Jeanie said...

It's hard to be encouraging, when all I want to do is cry! I am praying that our dear Abba will hold each of you close in His arms and make you aware of His presence and incredible love.
We love you,

At 1:53 PM, Blogger Pauleen said...

You are an incredible woman of faith - you, John, Ethan and Ellie are being prayed for "without ceasing"

At 3:48 PM, Anonymous Anonymous said...

Every night before we go to bed, from this point on, my family will pray/plan for ourselves to have a "fun day" the next day and for Ellie to have one as well. I can't imagine a better goal. Thank you for continuing to inspire and enrich our lives. We love you, Ellie! - Diana in Longwood

At 4:03 PM, Anonymous Anonymous said...

Dear John and Sarah,

Everything I try to write seems so . . . words fail me.

Years ago, before you had Ellie, or else when she was just a baby, I visited your home and stated my belief, based on Psalm 23 ". . . for thou art with me . . ."; that Jesus comes down to meet His children when it's time for them to come home.

I will pray that your little Ellie sees Him and is comforted, and that you will know that she did.

Walt Barbier

At 5:23 PM, Blogger Mrs said...

Uncle Chad is there! How wonderful! Answered prayer!

Our hearts and prayers are with all of you, of course. God loves you so much! You are not alone.


At 6:23 PM, Blogger Grandma Lois said...

Hello my darlings.I should be able to say something wise to you, being your grandma, but my heart is too heavy with tears. I am so glad you have your faith to uphold you and know also that my arms are around all of you. Ellie is never out of my thoughts or my heart, and her
grandpa David is looking after her also. Uncle Mike is here and sends his love and prayers too you also. You always have all of my love, Grandma Lois

At 7:06 PM, Blogger Brent said...

John & Sarah-

Our hearts and prayers are with you. We're praying for supernatural strength and incomprehendible peace for the journey ahead. We can see from the many posts that you are surrounded by families and friends, like our own, that love and care deeply for you all.

Though it's been a while since we've seen you last, we are holding you close in these days.

-Brent & Jennifer Bauer

At 7:32 PM, Blogger Becky K. said...

I trust you find Hospice to be the blessing we did this past Spring during a loss in our family. I was glad to hear that they have been out to see you.
Still praying... and will do so for a very, very long time!
It is so good that Ellie is managing to sleep at night. I hope that continues for her.
Becky K.

At 7:43 PM, Anonymous Anonymous said...

Sending lots of love and prayers your way!

"Let go, let God" was the motto of 11-year-old Gloria Strauss, whose battle with neuroblastoma came to an end in September. I think that you would be comforted and inspired by Gloria's story; it was recorded in a 10-part installment in The Seattle Times from May -September of this year. I encourage you to take a look at it if you have some time. The link is: www.seattletimes.com/gloria

There are also some audio recordings and slideshows of Gloria, and there is one in particular that you might want to see...it is quite amazing: http://seattletimes.nwsource.com/audio/news/local/gloria_4/

May God Bless you all with His infinite Grace and Love!

Love, Jessica Morley

At 8:35 PM, Anonymous McAlisters said...

This song has blessed us over and over and over again and trust it blesses YOU all today!!
When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.


My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!


For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.


But, Lord, ‘tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh trump of the angel! Oh voice of the Lord!
Blessèd hope, blessèd rest of my soul!


And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

We are praying for all of you these days and for your parents who are away from dear Ellie.

At 8:30 AM, Blogger Leni said...

When my father was dying, it was the most excruciating two weeks of my life. I won't go into detail, but when we decided to stop all treatment and just take care of pain, he came alive. For the first time in their lives, my children got to see what Grandpa was like before all the pain. He was the life of the party, and it was hard to believe he was really dying, though we knew that was fact.

It's been two years now, and I am still so grateful to God for giving us those two weeks. It was a gift of tremendous value.

At 8:20 AM, Blogger Mrs. Rabe said...

Praying and will continue. You have been on my heart.

Glad that Ellie is sleeping well, and praying that God will give you all such precious memories and family times, until the day she goes Home.

The Rabe Family

At 3:52 PM, Anonymous Anonymous said...

dear sarah,

today we saw a squirrel, and i began to explain to my boys, cyrus and arlo, that if they were to grab it, it might bite them and give them a sickness. arlo, who is three, asked me, "sick like ellie?", and cyrus said, "no, she has cancer". and then we began to talk as we often do, about ellie. arlo said, "we're going to see her in heaven... won't that be great!?". and then we talked for a time about how, since ellie loves and serves jesus, she will go to heaven, and that it won't be very long until we're all there, and we'll get to meet her. i of course, still pray for a miracle, that you will have your daughter for many more years, but it is special to think that there will be a little girl waiting in heaven for all of us... and that when we meet her, she will know all of us who prayed for her and loved her from afar.

i do thank you for sharing your story with all of us, sarah. it makes heaven so much more real for my boys (and for me). for them, even though they are only three and five, it makes death seem just like a journey to our eternal home, something to expect and look forward to. looking from the outside, i do see beauty in all of this... your walk with god and your reliance on him; your example to the rest of us, as parents, as christians; your ability to share with others what this is like for you. and also the beauty of a family helping to guide their child into the arms of jesus. i also think of how special it will be for your father to finally meet his granddaughter. and reading your blog helps me keep in perspective just how small and short this life is... that this time here is merely a preparation for eternity. i know you think about these things all the time, and i'm sure you find comfort in them... but i also can't imagine how painful it must be to be losing a child. i am so sorry that you're going though this sarah. we pray for your family every day.

love, chelsea (sloan) mulroney

here is a letter to ellie from cyrus:

ellie, i think that when you go to heaven, you won't be sick anymore, and when you see god, it will happen in a flash. and you will have an everlasting life. love, cyrus


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