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.

Monday, December 04, 2006

Answers...and more Questions...

Today we got the results from Ellie's bone marrow biopsies. There is still neuroblastoma present in Ellie's bone marrow, but apparently the cells are maturing. Contrary to how this sounds, it is a good thing. Cancer cells are very immature, so signs of maturation mean positive change. We are thankful for that much, as I was truly not surprised to hear that there is still disease present. We have been seeing enough signs lately to indicate that the cancer is still at work in Ellie's body. Tomorrow we will take Ellie in to the hospital for CT scans of her head to check on the tumor there. It would be lengthy to describe all of the reasons for our concerns, but in a nutshell: Ellie has lately had some pain in her legs (similar to, but not as severe as the pain before we discovered the cancer) and there is a good deal of pressure in her nose. One night during this past week (when I thought she was developing a cold) Ellie blew her nose and something came out. Sorry if this sounds gross, but it looked different from anything I had ever seen - the best way to describe it is "tissue". Ellie has also had some mental/emotional changes lately similar to those before her diagnosis. I was begining to suspect that the cancer was growing, but the results of the bone marrows is a little encouraging to me. Hopefully after tomorrow we will have a better idea of what is going on in Ellie's body. After the CT scans, we have an appointment with Ellie's doctor to check on her chickenpox and determine when the third course of chemo will start. I will try to get an update out to you all as soon as I know more information.

I have been kind of waiting for the best opportunity to fill everyone in on what we have come to realize is the most accurate prognosis for Ellie. When we first heard that she had neuroblastoma, we thought that she had about a 50% chance of survival. We have later come to learn that that is the average for children diagnosed with neuroblastoma, but that it is more complicated than that. Most of the children diagnosed are very young, and the younger the child, the better their chances are. Children under 2 years old have the best prognosis; next are children between 2 and 5 years old. There are MUCH fewer children over 5 even diagnosed with neuroblastoma, and their chances of survival are somewhere between 20% and 30%. Some children have a type of neuroblastoma that is resistent to treatment and can even grow during chemo. Those children have about a 10% chance of survival. We do not know if Ellie falls into that catagory. A big problem with this disease is that it is tricky and adaptable and has a high rate of relapse. In Ellie's particular case, the cancer has metastesized to quite a few bones throughout her body - I don't have an exact count, but it is in the neighborhood of 20. I wanted to explain this because I didn't want it to come as a complete shock to everyone if things do not always go well, or as expected. We have been gradually absorbing this information over the past couple of months, and I realized that I hadn't been sharing all that we were learning. I've not been intentionally holding back, but it has been a very overwhelming realization to come to that the "odds" truly are against us.

This being said, I do know that if, say 25% of children like Ellie make it, then that means that some DO make it. I also know that God cannot be factored into the percentages. We have by no means lost hope. We have every reason to fight and persist and stay hopeful and encouraged simply because we have a precious LIVING little girl who wants to continue living. And now that being said...I also know that there are no guarantees. I do not have a deep down knowledge or belief that Ellie is going to make it - I simply konw that God truly is enough for us whether she lives or whether she dies, and I know that no matter what...God is GOOD. And I know that the worthiness of a life is not measured in the quantity of years a person lives. My grandest dream for my children is that their lives would somehow bring glory to God. If God accomplishes that in Ellie in her young life, then her life will truly be as "full" as I could ever hope for. I cannot hold her in clenched hands, because I truly do not hold her at all. Ellie's life - body and soul are already held tenderly in the hands of God. I cannot ask for anything more than that - all I can do is wait...and trust. That doesn't mean that it doesn't hurt - I have cried so many tears because I want to keep Ellie with us - but it does mean that my heart is at peace...the kind that truly passes all understanding. I am so thankful to God that He has done this work in my heart, for it truly is His and not my own.

I pray that the God of all comfort will be with you all tonight, for I know that you have taken Ellie into your hearts and lives as well. Some of the words of another Twila Paris song just popped into my head: "Every heart that is breaking tonight is the heart of a child that He holds in his sight. Oh how He longs, to hold in his arms, every heart that is breaking tonight."


At 9:51 PM, Anonymous Melanie Miller said...

Once again you touch our hearts so deeply. I don't know if you read my comment on your "month of chicken pox" entry --but my feeling is still the same -- you are amazing! Know that you are all loved and always in our constant thoughts, Love Aunt Mel

At 11:05 PM, Anonymous Anonymous said...

Not sure if you have heard about the online support group for Neuroblastoma, but I thought I would leave you the link. You can get a lot of medical information there as well as support from other parents like myself. Here is the link to join.


Your in my prayers XXX

At 3:57 AM, Anonymous Anonymous said...

I am thanking God for you. You are truly living out the Christian character. You are an example for all of us to model. Though your pain is nearly unbearable, the light of Christ comes shinning through your life. Thank you for willingly sharing your heart and life with us. We love you all so much. T.,J.,J.,L.,C.,M., Skees

At 6:11 AM, Anonymous Anonymous said...

I just wanted to let you know that I am so amazed at how you're dealing with all this. I know that God is so much bigger than we can imagine, and if He chooses, He could give Ellie complete healing. I am praying for that and so are many other people.

At 6:18 AM, Anonymous Sarah said...

Thank you all so much!

And thank you, Mel- I did see your other comment and it meant SO much to me - it was just the encouragement that I needed that day! I love you so much.

Thanks Judy - we love and miss you guys!

- Sarah

At 8:16 AM, Anonymous Anonymous said...

Just a note to say thanks for boldly sharing your faith and for recognizing what a beautiful gift is this life we have been given. As for medical info and incredible support from a remarkable community, I'll second the recommendation to take a look at the ACOR list-serve. You might want to be a "lurker" for a time. Of course, you might not as the reality you described in this entry plays out there weekly. You might not need that now. The hope you express is spot on. I joke about the Drew Carey's line in Dumb and Dumber when told he had one in a million chance to date the blond: "So you're saying there's a chance, eh?" Exactly! I say all this to encourage you; never, ever underestimate my Jesus. There is always hope; as you say, God is good, all the time. My daughter Anna was diagnosed at age 17, so she definitely falls into the category you described. She has refractory disease, resistant to chemo, but has been stable now for about three years. At least we pray she is -- more scans on Thursday. She's a wonderful inspiration to many (especially to me). If you check out www.annabanana.org you can get the whole story of God's love (Anna's Journey). On the "meet Anna" page you'll want to read her "Andre Sobel Award" essay, confirming everything you said here about what it means to live a full life every day.
Grace and Peace,
-bob o

At 8:25 AM, Anonymous Ronalee Skees said...

We have been reading the posts; I just don't know the words that could justify a posted comment. Tyler Prays for Ellie every night and asks if there is anything new every day.
This post has touched us all so deeply. Your words have clearly presented your heart, your faith, and your love for your children.
Ellie's strength encourages us and builds faith even in things we don't understand.
- Ronalee, Derek, and Tyler

At 12:59 PM, Blogger Michelle Ugarte said...

Hello, I am one of the parents from the online support group. There is a tremendous amount of information and support for you so please look us up.
My daughter was daignosed with NB at 18 months old and she is now cancer free. I was reading your stats and I agree with what you said about the survival rate, but like you said.... NEVER give up!

Your daughter is soooooo beautiful and what you said in today's entry left tears in my eyes because I remember feeling the same way. Ellie will be in our thoughts and prayers every night!

Michelle - mom to Isabella dx w/ stage 3 NB

At 4:25 PM, Anonymous Heather said...


You are truely an AMAZING woman! You have always been such an example and role model to me and now even more. You are such a blessing and example to all of us. I pray that God will continue to show you His peace and comfort.

p.s. how are your toenails holding up?

At 6:30 PM, Anonymous Sarah said...

Thank you all so much for your encouragement and kind words! I appreciate it so much. Your lives and support have touched me so deeply.
Love, Sarah

At 6:30 PM, Anonymous Sarah said...

Heather - toenails are actually holding up pretty well! :-) Thanks!

At 10:49 PM, Blogger ~T said...

I read your posts daily and am truly touched by what you have written tonight. God bless you and your family during this trial.

Praying for all of you, although we've never met.


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