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, December 05, 2007

Update...

Yesterday Ellie was given a shopping spree at Best Buy by the Make A Wish Foundation! They sent her a generous gift card as well as a gift card to a restaurant. We kept Ellie in a mask and stroller in the store, but she had a blast picking out wonderful electronics, movies and games. The store also gave Ellie some special gifts! We then went to the restaurant, where we were able to get a table in a little alcove away from the general public. Ellie even spent a good amount of that time in the stroller. At the end of the night, she said "this is the most fun I've had since my birthday!"

Despite our best efforts, Ellie did pay for the energy expenditure and excitement. She had a difficult night and a day spent lying down. Her pain has been worse today, but if you ask Ellie, I'm sure that she would tell you that it was worth it! Now she can just hunker down and enjoy her new toys. :-)

Thank you all for your sweet comments and emails! I'm glad you enjoyed the pictures. I wish I had done better putting them out sooner - thanks for your patience.

As always, thank you for your continued love and prayers! They mean more to us than we can express. Thank you for sticking with us through the days with no news. Sometimes it feels like we are in a time warp - days go by so quickly even when it doesn't seem like we have done anything at all. The remedies have been working in an almost miraculous way, but it takes a lot of time and energy on Loretta's part to study and pick the right ones. Melanie has been great to have here to administer medication and access Ellie's port to give fluids. I wish that I could give you a sense of what the days are like... so much time is spent discussing each and every move that we make - medicine, nutrition, homeopathy. When an unexpected variable comes up, we talk some more - hashing out all possibilities. Most days I feel exhausted when I'm doing absolutely nothing - even when I get a full night's sleep. I have more help than I could possibly even wish for (I don't even have to cook, as Reni takes care of that!) but I still seem to wake up tired and go to bed just as tired. Both kids are kind of clingy in different ways right now (understandably so). Loretta keeps Ellie at night, which works out well for all of the remedy dosing, but I always snuggle with Ellie before she falls asleep. Unfortunately Ellie doesn't go to sleep until midnight or 1:00 a.m., and Ethan wakes up around 7. John's work schedule is working out wonderfully! He works from 6:00 a.m. to 6:30 p.m. on Friday, Saturday, and Sunday - and then has four days off! We love that. It has been wonderful to have him around so much. His days off go fast, but his work days go by even quicker!

For those who are reading this tonight, please pray that Ellie can sleep well with little pain. Also, as you pray for all of us, please lift up Loretta specifically. She lost pretty much a whole night's sleep last night. Another specific request is for all of us to remain healthy. We have heard that there is a bad flu bug in the valley right now. Having to quarantine any of us (particularly John, Loretta or myself) would be difficult and heartbreaking in the extreme. I guess it may sound a little odd to be so concerned about sickness now that this seems to be the end for Ellie, but we are clinging to each and every day that we have with her. And then there is that ever so tiny little ray of hope that we still carry in our hearts. I suppose that it doesn't make any rational sense... but as long as Ellie is alive, we can't help but live with that barely discernible hope. Which is why we wake up every day and do the same things that we have been doing all along to bolster her immune system and fight this cancer. All we know what to do is to keep fighting, even while we let go. I know, it really doesn't make any sense... but then somehow, it does.

As always, through the fog of exhaustion and raging emotions, the grace of God is always present... and always enough.

11 Comments:

At 9:56 PM, Blogger Robyn said...

I'm praying for you all. How wonderful that Ellie had such a special day. Hang on to your hope, and enjoy every minute. Praying especially for relief from pain for Ellie and good health for you all.

 
At 10:26 PM, Blogger Jeffrey said...

I so understand the sleeping but not resting part. The bad part is I am finding whether they live or die we still don't find rest. When they live we are haunted by the chance they may die and when they die we are haunted by the memories of their life. Or so it seems. I may be wrong. I swear I have PTSD from the whole experience and yet I know our cancer journey was so much shorter than most folks'.

Make sure you are taking care of yourself and keeping your adrenals supported and taking whatever supplements you know you need during times of stress. You can't take care of Ellie unless you take care of yourself first.

We continue to pray for you guys and as Jillie's hair comes in finally she reminds me of Ellie. Who knew I would ever think such a short do is cute on girls. :)

 
At 10:27 PM, Blogger jeni said...

It makes sense, if she's your daughter:)

I think of Ellie a lot. Sometimes, it seems all day long.

I've said before, "I've never even met Ellie!!!" But she lives in me. It's that strange sense of a little spirit, reminding me to love more, live better....

Even though I will never meet Ellie here, I will definately look hard for her when I go to heaven.

Ellie has such power and strength.

A lot more than we know, or ever will.

I thank God for you, Ellie.

You are wise, strong and full of chutzpah, even when it's a softer, more gentle chuztpah!

Love,
Jeni

 
At 10:44 PM, Blogger jeff said...

It's true,
Though it makes no sense, it makes perfect sense. Fighting and letting go at the same time. It's like the idea of "sorrowful joy" someone told me when my wife was dying - you have joy in knowing where they are going, yet sorrow because we can't go with them. It's the true meaning of "bittersweet".

Dear Lord, please allow Ellie to have a full night of sleep tonight. Please rest her body and her spirit so that she and her family may have a restorative night. Please hold her heart in your hand, even now, that she would have no fear of whatever may lie ahead. Whether through a peaceful death or a miraculous healing - may You get the glory. Please give grace and peace for the journey to all of us. We desperately need it.
In Christ's name.

Sleep well,
Jeff

 
At 11:10 PM, Blogger c.g. said...

Sarah,

It is wonderful to read that Ellie had such a good day and you made another precious memory.

Praying for you all to stay healthy so as to be able care for Ellie's needs.

May all the hands that care for Ellie be given strength and may each heart be blessed for the love that they wrap around Ellie.

"Your statutes have been my songs in the house of my pilgrimage.
I remember Your name in the night, O Lord." Psalm 119:54&55

our prayers and love to each of you.

 
At 8:28 AM, Anonymous Anonymous said...

We are praying for you. My daughter Hannah is so concerned about Ellie. She prays for her at our church and regularly asks how she is doing.

Our children understand death because our third born son was a full term still born baby. The peace KNOWING that he is with Jesus helps to ease the pain and absence so much. Rest will come, but Ellie will always be alive. I like to think of it like a vacation. You all will be separated for a time, but the day will come when you will be reunited FOREVER! The separation will be hard and sometimes hurtful, but you always have the HOPE in JESUS and NO ONE or anything can take that away - not even death! You all are doing such a wonderful job! Keep fighting the good fight and finish the journey knowing that you have done everything in your power and that this was God's perfect plan. Here is a poem that someone gave me that has encouraged me so much.

His Plan For Me

Sometimes the path He chose for me has lead through pleasant ways,
Through peaceful valleys, quiet streams, with warm and sunny days.
Sometimes the climb is steep and rough with darkness overhead,
With chilling winds and falling stones, but still the path I tread.
I know the path was planned for me according to His will;
I've trusted Him throughout the past and I will trust Him still.
And someday He'll reveal to me the wisdom of His choice,
Then I'll know why this path was best and praise Him and rejoice.

God is so good. Do not allow Satan to plant the seed of bitterness. Start praying now that the Lord will protect you from becoming bitter. He answered my prayer. We know that GOd did what was best for us and we look forward to spending eternity with our son someday! We have so much to be thankful for.

KNOW that we are continually lifting all of you before our caring, loving, all-knowing God. HE IS GOOD!!!

Nicki

 
At 9:32 AM, Anonymous Anonymous said...

I am so glad that you got to have that special family time together to make some more memories. You make complete sense to me. I continue to pray for you as a Mother to have strength, and I will pray for all of you to stay healthy. My thought's and prayers are with you daily.

 
At 10:03 AM, Anonymous Anonymous said...

How nice for Ellie! I'm praying that every moment spent with one another will be precious, and that God would give you the gift of a wonderful Christmas together. I'll be praying for physical and spiritual strength for you and your family. You are such a testimony to the sufficiency of God's grace. Keep believing - He will ALWAYS be enough.
Holly

 
At 1:22 PM, Anonymous Anonymous said...

John and Sarah,

We continue to pray for all of you. And yes, you make perfect sense as our whole lives are built on contradictions like - through giving our lives we save them. Sound familiar. So many things in life are the same way. Continue hanging on and letting go and avail of His strength.
Arlen and Rhoda

 
At 2:04 PM, Blogger Becky K. said...

Praying for all of you.

Becky K.

 
At 5:45 PM, Anonymous Anonymous said...

"God is our refuge and strength, a very present help in trouble...Be still, and know that I am God."
~Psalm 46:1,10

 

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