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, January 04, 2007

Test Results...and Future Plans

I'm sorry I haven't posted in a few days. Ellie did fine after the bone marrows...she has had a little soreness, but not enough to slow her down much :-)

The results came back that there is still a little neuroblastoma present in Ellie's bone marrow, but the Doctor's sense was that there has been improvement. We will not be heading up to Jacksonville for the stem cell harvest this cycle, and Ellie's doctor will be conferring with the doctor in Jacksonville to determine whether it's even possible to try after the next cycle of chemo. Apparently the longer we wait, the more difficult it is to be able to harvest any stem cells at all. While this may sound like discouraging news, we actually are somewhat relieved. We have heard a lot of pros and cons regarding bone marrow transplantation, so we are really at the point of praying that God will bring everything about in His perfect timing...and that might mean no transplant (and no harvest). Since we truly do not know what is best for Ellie on this one, we will just wait and trust that God does.

Along with the news of Ellie's bone marrow results, we were told that some of her counts are down, particularly her white blood count. This means that Ellie will not be going in for chemo until next week, at least. We are happy that this will give her more time at home to EAT! Everyday Ellie has good energy and she manages to keep eating more and more. We are praying that she will go back into the hospital weighing more than she did before the start of the last round. Her current weight is hovering close to 46 pounds (which is 2 pounds higher than when we came home from the hospital). I would be thrilled if she could make it to 48. Her stomach rarely ever bothers her these days, so everything settles well! The main reason that weight gain is such an issue right now, is that after cycle 5 of chemo Ellie will undergo surgery to remove her left adrenal gland (the location of the origional tumor). Given how easily Ellie loses weight, and how difficult it is to regain, surgery has the potential to throw her body for a loop. Many children loose weight when they have cancer and go through chemo, but they mostly start out as normal sturdy little kids. Ellie started out looking like a cancer kid, not at all sturdy and certainly not plump - her starting weight was only around 48 pounds. Going down from that point is simply not an option we want to consider. (The picture at the top of this blog was taken in the hospital after she had been on steriods for about a week - she hasn't looked that full-cheeked since she was two years old!)

Tonight we picked up my Grandma Lois from the airport. It was great to see her again, but the kids won't be able to see her until tomorrow. Ellie is SOOOO excited. We haven't seen her for at least 2 years. I will try to keep you up on any major goings on, but my updates might be a bit patchy over the next several days. I'll try to get some good pictures to post.

Thanks so much for your love and prayers, and I'm sorry I didn't get you the results of her test sooner...I'll try to do better next time. :-)


At 8:33 AM, Blogger Jenn said...

Love you guys! God does have His hand on this, doesn't He? We continue to pray without ceasing for ALL of you!
Jim, Jenn & girls

At 8:50 AM, Anonymous Sophia said...

I was linked to this website through Jessica H.'s and have been reading and praying for Ellie and Ethan and all of you ever since you started this page. I can't even understand how hard this must be for you and your husband but I have to tell you how encouraging your faith in the Lord and your strength. Ellie is a strong little girl and it's not hard to see where she gets it from. So thank you for sharing what is going on in your family and for being so encouraging to me in my life.

What a mighty God we serve!

At 9:43 AM, Anonymous Sarah said...

Thanks Jenn! We love you guys so much - and miss you.

Thanks Sophia. I'm so glad that you are part of our lives as well. Thanks for praying for Ellie even though you've never met her! That encourages us so much.

Love, Sarah

At 12:21 PM, Anonymous Anonymous said...

Hey! You do so well all the time at keepng us informed. A few days here and there with out new info will not hurt any of us. May be it will cause us to pray more ferverently. :) I just want to tell you that you are a great writer. You have such a gift with words.
Love you, Vickie

Thanks Ellie for the V stickers!:)

At 10:02 PM, Blogger Julie K said...

Sarah, It has been a long time but you and your family have been ever so close in my heart and prayers. Joan Lake passed on Ellie's blog site to me and I am ever so grateful. I have passed it on to Jennifer, your ol' "Susanville sis". Jenn is married and has a little girl, Eden, who just turned two and another little girl due any time. She lives in Garland, TX where her husband is a doctoral student at DTS. Jodi and I are near her in Mesquite. Jeremy is in San Diego. John went home to be with the Lord in 2001. Your little Ellie is so precious...her faith and yours are evidences of the grace, and love, and strength of the Lord as only He can provide. Thank you for being so transparent and sharing your heart, challenges, and struggles and above all God's grace with all of us so that we may uphold you and Ellie and your family before the Lord. You have no idea how many lives you touch but God does and each one is in need of what you have to share. Just wanted you to know we love you and are praying. Our God is the God of Miracles and the God of the Possible. He has reminded me over and over that I can trust His integrity to hold me up by His grace and I know He is continuing to do the same for you. I can sense it in the words of your heart and the beauty and depth in Ellie's eyes. You needen't ever feel you are standing alone as He is everpresent holding you up in His arms. As a friend shared with me Ellie, He will not put you down until you are ready and then He will never let go of your hand. He is the anchor that holds.

We love you. I pray Sarah,that you and Jenn might find opportunity to re-connect. Your friendship was such a blessing and joy! We do have roots that still intertwine :o) Sorry this is so long but it has been a long time and so much has happened in both our families.
In His Love,
Julie Keith

At 10:42 PM, Anonymous Sarah said...

Vickie: Thanks - I love you so much too!

At 10:51 PM, Anonymous Sarah said...

Julie: Thanks so much for commenting! It was great to get updates on your family. Please tell them all hi from me...and I would love to re-connect with Jenn! (If you leave her email on a comment I would love to write her.) Thanks so much for your words of encouragement...I know you've been there! I had heard about John - I'm so sorry. We appreciate all of your prayers for Ellie and for us - we do feel completely held up. Thanks again for writing - I can't even tell you how much that means to me.
Love, Sarah

At 9:51 AM, Blogger Julie K said...

I can so relate in many ways to what you are experiencing. Ellie sounds like quite a little fighter and go getter. She is so fortunate to have the love and encouragement and tender support of her parents and family and friends...it does make a difference being proactive rather than passive in her treatment. They told us that this was so important. Here is Jenn's e-mail: jk_titania@hotmail.com.
Guess I'm new to blogging as I don't have the system down yet, ha!
Love & Hugs,
Julie K

At 5:51 AM, Anonymous Sarah said...

Thanks so much Julie! I'll email Jenn. :-)


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