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, October 31, 2007

Fear, Pain, and Hope...

Fear, Pain, and Hope...

I'm so sorry I have not been posting. I cannot even tell you how busy things have been these days. The family has all returned to Florida, but we are still pushing hard to finish our home and move in. On top of that, John has been pursuing a couple of leads on jobs, and it looks like he may be going to work as early as next week! If all works out, he may be in a job where he can work three 12 hour shifts and have four days at home every week. That would work out so well for our family, as it is our deepest desire for John to have as much time at home with Ellie as possible!

Over the past couple of weeks, Ellie began having some pain. First in her back and then in her leg. We have been on something of a roller-coaster ride emotionally. The pain has been in areas where we know there is cancer, and at first we were preparing ourselves that this pain marked the beginning of the end for her. But then we remembered that just before the pain began, Ellie had done something while playing that was an unusual movement for her. And then after a number of days, the pain subsided. We have been able to give her relief from the pain through the use of a heating pad and Homeopathic remedies. The other night, just one dose of a remedy allowed her to sleep completely through the night without pain. We do have an appointment with a doctor to set up a plan should we come to the stage of needing drugs for pain control. In the middle of all of this - the pain, and family leaving, etc. - Loretta began researching and following up leads on various supplements and diets that we have heard about. We have already been using Homeopathy and certain dietary supplements to treat the cancer and help with Ellie's overall energy levels and such, but we have renewed our efforts to seek out the best plan for Ellie's care. (We are currently working with a Homeopath who is an MD in Internal Medicine, a PHD Nutritionist, as well as a Pediatric Internal Medicine doctor who has shared our experience on a personal level in his own family. We are also able to keep in contact with our Oncologist in NY, as needed. As you can see, we have a wonderful team that we know and trust!) We are now in the process of adding some things and "tweaking" Ellie's diet. When she was in the middle of chemo and radiation, it was just too hard for Ellie to take anything new or different by mouth - basic food was hard enough. We are finally far enough away from that to be able to try some things. And so, after all of the research, we are encouraged that there are still things that we can try to treat the cancer - and all will go hand in hand with the Homeopathic treatment. Already, after implementing just one new food, Ellie's energy is better and the pain is gone!

The emotional ups and downs of the past few weeks have been draining, but we are beginning to sense a leveling out in recent days. It is so hard to know what to think and feel sometimes. We know the reality - that Ellie very well may lose her life to this disease, but we have chosen to live in hope. Some may think that it is a totally unfounded hope, but it gives us the energy that we need to fight. Ellie is certainly not done fighting! She is motivated to do the things that it takes to help herself feel better. And most importantly, whatever the outcome, we refuse to allow this time to turn into a "living wake" for Ellie. We will not mourn for her until she is gone. And she is still very much alive... and happy.

We have been saddened lately to hear about 5 deaths of NB kids in the past couple of months. We knew two of them. Two months ago, Lillie Boyte, an adorable little three year old girl that we met in NY lost her fight with Neuroblastoma. She died 10 months after her diagnosis. On Monday, Grace Oughton died after her two year fight with NB (she relapsed once). She was also three years old. Her dad, Alec, was one of the driving forces behind "The Loneliest Road Campaign". If you go to the website: www.loneliestroad.org and click on "about us" you can see a picture of Alec and Grace - next to the pink angel wings. Alec is one of the fathers on the video when the website comes up. Our hearts break for these families. Please pray for them.

I don't mean to leave you on a sad note. We just put one foot in front of the other each and every day. It's all we know to do. Ellie's well-being is our top priority, along with Ethan's emotional wellfare. This is a walk that we can only do with God's help, and your love and prayers have been such a part of the process. We feel the hand of God on us continually, even in the down times. His presence is always there.

Once again I find myself without adequate words to thank you all. Many of you, and your children, have done such special things for us that I have yet to thank you for... I cannot tell you how often I see things that remind me of your thoughtfulness and generosity, and one day I will finally be able to tell you personally... Please know, until then, that I appreciate you from the bottom of my heart.

24 Comments:

At 12:57 PM, Blogger c.g. said...

Continuing to pray for you all and for the strength and wisdom you daily need.

Also will now add the families of those who have just lost precious love ones.

Hope...

"When Jesus is my portion
A constant friend is He
His eye is on the sparrow
And I know He watches over me".

our love to you.

 
At 1:28 PM, Blogger LindaSueBuhl said...

You experienced one of those weird "living with a major illness" things. Even people with some biggie condition can get sprained muscles, colds and infected toenails - ain't life wild? Relieved to see the update and hear about the multi-pronged approach y'all are taking - we serve an amazing Creator and He is fully able to heal and sustain. Will pray for John's work situation and we pray several times a day for Ellie - her namesake goat is growing like mad! Rest when you can, breath deeply the joy smell of being together - thank you and bless you
OH - our missions pastor and his wife visited Rachel Chapman recently and remarked how well she is doing - she is a super gal.

 
At 4:08 PM, Blogger Robyn said...

I haven't commented for ages although I've been following Ellie's journey and praying. Just wanted to say Hi and that I'm still praying. Glad you're living hopefully :)

 
At 8:34 PM, Anonymous Anonymous said...

We're continuing to pray for your family, and you're right to enjoy every day of Ellie full of life, and to keep hope. Our God is able to do amazing things, and I know He already has in your lives, and will continue to do so.

Holly Scheidemantle

 
At 8:59 PM, Anonymous Anonymous said...

Please please share more details about what you are doing with Ellie's care. As one cancer mom to another I soak up all the info I can get. Jillian got a cold the other day and complained of headache. Of course we immediately thought relapse in her brain and rushed her to the ER. After a CT Scan we were reassured there is no sign of cancer and within 24 hours she was fine.

Isn't it a dumb way to live?

Have you seen www.samuelbackus.com? That is an amazing story of a kid who had no hope who is living thanks to alternative treatments.

Katie
www.teambettendorf.com

 
At 9:28 PM, Blogger oneofhisfriends said...

Hi Skees family,

Make a joyful noise unto the LORD, all ye lands.
Serve the LORD with gladness: come before his presence with singing.
Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture.
Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name.
For the LORD is good; his mercy is everlasting; and his truth endureth to all generations.

Psalm 100

I'm very glad, with you, that we belong to Him.

Agapé

 
At 6:01 AM, Blogger Mrs said...

Continued prayers for Ellie's healing and pain-free living. Prayers that God will use the homeopathics to heal her!

Her last treatments were so devistating; it's a wonder anyone, much less a little girl, can live through that. Ellie, you are one tough chick!

 
At 6:59 AM, Anonymous Anonymous said...

we are praying for all of you each and every day. our hearts go out to you as you care for Ellie and put it all in God's hands. You all continue to be an amazing testimony. we love you. the Simons family

 
At 10:26 AM, Anonymous Beth Scales said...

I have followed Ellie's story for several months and this is my first posting.

I pray for all of you everyday. Your words about hope were right on. Even though I have an incurable cancer, I have hope and the presence of our Lord to get me through each day. I pray that the same is true for Ellie.

Hugs & Blessings

 
At 5:52 AM, Anonymous Jill Heins said...

...our Minnesota prayers continue to go to our Father, healer, and Friend!
With much love to you all!

 
At 2:09 PM, Anonymous Anonymous said...

Hi Ellie, I VISIT you often to find out your news. Without a doubt you are in my prayers and of course how can I forget you.. Your photo is posted in my office!! Give big hugs to your family for me. Ellie you're an awesome young lady! Love Maria

 
At 6:22 PM, Anonymous Anonymous said...

We are with you always...keeping up with your journey and wishing we could do more to make a difference for you. Your words are always encouraging and we want the same for Ellie...seeing her always as a healthy, happy whole child.
Much Love, Garcias in Paradise

 
At 6:33 AM, Blogger Codey said...

Hello, I just wanted to tell you that Ellie is in our prayers and we are praying for strength for you and John as well.

Hope is a word that every hurting heart understands.

Hope shines brighter than the brightest star on the darkest night.

Faith is bigger than the highest mountain.

And God is greater than any obstacle in your path.

Anything can be accomplished by those who fully put their hearts into it.

The time to start is now the place to start is here.

May hope cast its special light upon your path and God bless everything you touch in the hours, days, and moments still to come.....


Thinking and praying for Ellie and family.


Amy St John
www.caringbridge.org/visit/codeystjohn

I don't know If John remembers meeting me in the Elevator at Ronald last March, when we had the big snow storm. I told him them how we always check in on Ellie and have ever since. Take Care and God bless.

 
At 11:04 AM, Anonymous Anonymous said...

lifting you in prayer as always - Judith from CFC in Jackson, MI

 
At 5:37 PM, Anonymous Debi Hall said...

We are checking in daily and praying to a God who truly cares about EVERY detail of your life and family. We, too, have had cancer touch our lives, and we are close friends of the Sumralls. Praying, praying, praying for God's grace and many days filled with strength, purpose and smiles from your precious Ellie and Ethan. You have more praying friends than you will EVER know!!!!!
Debi Hall and family

 
At 12:48 PM, Anonymous Anonymous said...

Checked out the Loneliest Road website and the videos in you tube amazing!!! God bless them. Thanks for sharing about them.
Also learned about Bobby and his fight wiht neuroblastoma. Thanks to his dad and mom he is doing pretty good, their motto "no stone left unturned". His dad went on a search for different ways to treat the cancer. This family from UK, had to do the traditional treatment or the government take their son away, so they did and also went on a regimen on non-traditional treatment (natural, homeopathic, and holistic ) and with all this little Bobby is doing pretty good. Read and watch the you tube videos on this family's journey with neuroblastoma on www.bobbysfund.org

 
At 3:39 PM, Anonymous Anonymous said...

Hi Skees Family-
I think of you all the time, and check this blog often. Please know my best and warmest wishes are with you always.

Dave (from the plane)

 
At 9:15 PM, Blogger jeni said...

wow. i came across this blog for the first time tonight.

i don't have kids, but even reading this through your words breaks my heart! i can't begin to imagine if it were my child.

i'm truly blown away by your strength, as well as your ability to say, "i'm exhausted!!!!"

i especially loved the way you talked to ellie about the latest chemo/radiation options.

i will certainly pray for you. peace to all of you.
love,
jeni

 
At 8:38 PM, Blogger oneofhisfriends said...

Thanks for your words on hope.

Here are some more:

Blessed be the God and Father of our Lord Jesus Christ, who according to his great mercy became our father again to a living hope through the resurrection of Jesus Christ from the dead, to an incorruptible and undefiled inheritance that doesn’t fade away, reserved in heaven for you, who by the power of God are guarded through faith for a salvation ready to be revealed in the last time. Wherein you greatly rejoice, though now for a little while, if need be, you have been put to grief in various trials, that the proof of your faith, which is more precious than gold that perishes even though it is tested by fire, may be found to result in praise, glory, and honor at the revelation of Jesus Christ— whom not having known you love; in whom, though now you don’t see him, yet believing, you rejoice greatly with joy unspeakable and full of glory— receiving the result of your faith, the salvation of your souls.

1 Peter 1:3-9

Agapé

 
At 7:12 AM, Blogger tricia said...

Hey Sarah. I was reading 1 Peter 1:6-7 and it made me think of you, and what an encouragement you are to me. Love you, Tricia

 
At 11:48 PM, Blogger Jessica said...

Hi Skees family,

My name is Jessica Morley - I came across your site from a link on another page. I just wanted to let you know that I will be praying for Ellie's healing. I have a pretty good idea of what you are going through, as I was blessed to journey with an amazing young girl named Gloria Strauss who too battled neuroblastoma.

Miracles DO happen, and I am so happy to hear that Ellie is a fighter and that you have chosen to live in HOPE! 15 1/2 years ago I was also treated for stage IV neuroblastoma; I am 17 now and have been very healthy ever since!

May God Bless you!

Love, Jessica

 
At 10:33 AM, Blogger meg said...

I don't know if you have looked into it already, but I've recently heard about Noni juice helping cancer at any stage, I've also been told Willard Water can be helpful for many health conditions.

Not sure on the details of either, but thought it wouldn't hurt to mention them.

love and miss you guys :)

 
At 1:41 PM, Anonymous Schneider said...

Hi I'm not sure where my posting ended up so I am sending another. We are praying for all of you. Have you ever heard of the Hallelujah Acres Diet? I have 2 friends who are treating their conditions with this and FAITH and are doing very well. One had a brain tumor and the other has lupus.It might be worth checking out. Psalm 62:8Trust in Him at all times ye people, pour out your heart before Him:God is a refuge for us. Selah The Dan Schneider Family

 
At 8:55 AM, Blogger Gerry said...

Hi Ellie and Sarah! I find I only write when you post to the site. Just wanted to let you know I'm thinking of you all and praying for you. Hope John's job is working out well for you all and the house is ready for some 'touches of Sarah' We are in the 'thankful' season; but for us, we are always thankful. Love and blessings, Gerry

 

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