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Friday, October 18, 2013

More Prayer, More Praise, and More Pineoblastoma

We talk about staying in today, but it only seems appropriate and necessary to take a look back at when this journey began. The following is our post shortly after we found out Ellie's diagnosis with Pineoblastoma.

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Jeremiah 29:11 "For I know the thoughts that I think toward you, say The Lord, thoughts of peace and not of evil, to give you a future and a hope

Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Philippians 4:11 "not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content."

1 Corinthians 10:31 "Whether therefore ye eat, or drink, or whatsoever ye do, do all to the glory of God."

We know that Ellie was chosen by God a long time ago to go through this.

As her parents we were also chosen, we have been given a privilege, and it is a true blessing. We want God to get everything he deserves out of this. While we would certainly love a miracle and for doctors to be baffled by a tumor that just disappeared, but if that's not God's will, if that not what is going to bring Him the most glory, we're o.k. with that. All we can do is focus on today, the blessings we have been given today, the smiles we have today.
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Back to the now...

When Ellie started acting funny last Friday I did start to panic. She had woken up in the middle of the night very shaky and unable to walk on her own.  I hadn't been warned of this side effect so the radiation docs took a look at her Friday. By then she was able to walk on her own again but not with the same confidence.  They weren't sure what was going on and no one seemed to think it was because of her cancer, but they ordered an MRI for Monday anyway. We went ahead with radiation Friday and by that evening her tremors were back. She just wanted to sleep on the couch. She improved over the weekend, I started to gain my confidence back that this was all just some crazy radiation reaction and she'd be okay. She started moving much better, still a little unsure and wobbly, but super happy.

We learned Monday, after her MRI, that in three short weeks Ellie's cancer has taken over her brain. Her spots have grown, her cancer had begun to spread, and new spots were showing...in 3 short weeks. For a minute I wanted to think, what if we had acted sooner...done chemo instead. But the what ifs get lost when you know you have done everything to follow God's path. I don't think we did anything wrong, this is just our journey. We were chosen for this. And I can't really say I don't know why anymore, I know why. God gave us this beautiful child to share his love with the world. He knew her sweet cheeks would draw people in, they would care about her, they would see how her parents love The Lord. They would see the ups and the downs and they would always see God's love.  I know why, but it doesn't make this hurt any less. My head has swirled with what we do now....I don't want to do this, I don't want to make these plans, I don't want to have these talks. I don't want to lose my daughter.  But I guess that part isn't really up to me. I know He's completely capable of healing her, I just don't know that's His will. It all still feels like a dream. She's been in such a good mood, smiling and laughing.

It was decided to discontinue radiation. Radiation causes the brain to swell and Ellie already has swelling and irritation from these new growths. Continuing radiation would cause more harm to her.  Because of how the tumor has spread surgery isn't an option and more high dose chemo involves hospitals, side effects, and in the end the same outlook. I held Ellie as I took all this info in, with Mom behind me. We always knew what the prognosis of this cancer could be, but never went there in our thinking, because it wasn't happening today...but today it's happening and we are now faced with the reality of this cancer.

She is now home on oral chemo and steroids to help with the swelling. We are home with a team that is being organized as we speak to help us. I am home with peace in my heart for today. The choice to go home was by far the easiest one we've made.  She is not mine.  She belongs to someone who loves her more than I do, even though I can't imagine how much that is. Trying to find other ways to heal her at this moment isn't going to happen....he told me "I will heal her" and he's right, only He has the healing power needed for this one. Trying new things and searching out other opinions is only going to take away the short time we have left. Some how I find comfort in knowing that if I won't be taking care of her that Jesus will be...doesn't make it hurt any less, just has a little extra comfort.

We now have to adjust to this new life, and maybe I'm clueless about what we are about to encounter, but it's not happening today. Today my girl is happy to be home...she couldn't wait to get there to see Noah, SG, Daddy...and Miss Kelly ( since Ellie thinks she lives there). She is in a great mood, has a good appetite and a bright smile. Saying goodbye to our friends at St. Jude wasn't easy, they were such a huge part of our lives and I hope to think we left an impact on them. I know we left a lot of glitter on them...Ellie wore her new sparkly jeans :).


 
Many are starting to ask what they can do to help or what we need or what our plans are...we don't know.  This is still all very new to us and we are trying to figure out what this new life looks like.  As many of you know I love a solid plan as much as the next girl, but our life is truly lived in the "now".  Richard and I are on leave from work and we are trying to enjoy the now as much as possible.  Noah knows what he needs to know for the now, and we just ask that if you are close with us that you speak carefully around him.  He's got a big heart, big ears, and a big brain. He can't possibly comprehend all of this is in our near future.
 


 
Prayers, Praise and Pink
Carly and Richard

33 comments:

Jill McDonald said...

My heart breaks for you and my spirit is uplifted by you. I don't know you personally but know many people who do know you personally and are also in awe of your strength and more importantly faith in God. I wanted to let you know that my Ellie prays for your Ellie every night and your pictures and posts of your glitter and pink lovin' little girl melt my heart. She truly is an amazing gift from God.

Pam Green said...

Prayers for Ellie and your family ,If you need anything please let us know . We are here for you and your family!

Martha and Richard Ross said...

Daily prayers for you all~ Please know we hold you all in our most sincere prayers as you continue on your journey.

Angelique Wynkoop said...

You are an amazing amazing person, with an equally amazing little girl. My Ellie will also know the story of your Ellie and will have her as an inspiration of what life is meant to be. Love. Love. Love.
- Angelique Wynkoop

Ammie said...

Y'all don't know me, but I have kept up with Miss Ellie's story through Kelly and a few others on facebook. I can not imagine such a choice that y'all have faced and the many more you will. But it touches me to see y'all putting everything in God's hands and wanting to glorify Him in everything you do!! Thank you so much for your faith...we are praying for God's will and peace for your beautiful family!!

Mary Brooks said...

Carly, my heart breaks for all of you.......I so admire your faith. It has made my faith stronger. That sweet little girl weezeled her way into my heart through your Moms posts on FB. Her smile and spirit touched my heart from the first picture I saw of her. May God wrap his arms and love around your family, and I hope you know how many people love you and your family.
Kisses for sweet Ellie.......
Mary Brooks

Stephanie Whindleton said...

I don't know you or your family, but your post moved me because of your faithfulness! His grace is more than sufficient!!!! Despite of your situation...but God! God is the designer of our future and author of our soul. We are just stewards over those under us. The love you have for our Father will conquer ALL. I pray to God that He intercedes on my behalf that He keeps you all grounded in His word, strength you and knowing where your help comes from. She is healed from the crown of her head to souls of her feet, declare it and believe it! You all are in my prayers and lifted up.

Cathy Donahoe said...

Dear ones, I am so moved by your story of your beautiful daughter and this journey you are on. I lost a daughter to cancer 12 years ago. Her name is Leigh and she was a registered nurse. She was diagnosed with breast cancer at the age of 27 and the next three years was a whirl of doctors appts. chemo and so much more (I know you understand). I lost my sweet girl to the cancer that spread to her brain, lungs, and spine. Jeremiah 29:11 is the verse we clung to during her illness. Little did I know her healing would come in death. This took a terrible toll on my relationship with God but eventually made me love Him more, knowing He made it possible for me to be with her forever and never be separated again. I will be praying for all of you. While our stories aren't the same, the heartache is. God bless you with grace and mercy as only He can do.
Cathy Donahoe

Rebecca Mitchell said...

I love you all so much.. You've touched my heart. Thank you for renewing my faith in God. Not with a miraculous healing but by living what you deeply believe. I am touched beyond words and will never, EVER be the same.

Paulah Lee said...

While I admire your strength, courage, and faith, I am utterly heartbroken for your family. She is precious and I will be praying.

threedog22 said...

I am truly amazed at your faith and your strength. I am also truly heartbroken! It took me probably 10 minutes to read this latest post, because I had to wipe my eyes every other minute. Please know that you, Ellie, Richard and the entire family and group of friends are in my thoughts and prayers every single day. God bless you all.

Beth said...

Carly, like so many others, you don't know us but we know of you through Robin Walters and Helen Walters. We have fallen in love with Ellie and prayed for her everyday. We have lost our son several years ago (not to cancer) and know both the pain and the consolation God gives. He held us constantly in the path we had to walk and comforted us beyond description. We will be praying this for you and for all who love Ellie. I pray also that some of your grief and pain may fall on us that we might help carry your burden. Love to you all. <3

Tara Quarles said...

My heart is breaking for you. Many prayers and much love to you guys.

Anonymous said...

I don't know you personally, but I've been following your story through Facebook. Your family and Ellie are an inspiration. thank you for sharing your story and teaching us to value life for every minute. I will be thinking about your family......

Linda Harris said...

I don't know you personally, but I have been reading your posts on Facebook. I am so sorry. You are in my thoughts and prayers. May God bless you with an abundance of peace, comfort, love and strength.

Pam Yates said...

Know you and your Mom. My soul cries with you and feels the love you have for God. May God give your family his peace and love and his hand hold your little girl close to him. My Prayers

Brenda O'Brien said...

It is no wonder that God chose your family to take this journey with Ellie...your faith is an inspiration to me and so many others. As you said, however, that doesn't make this any easier. I pray that you are given continued strength to face each day and each new challenge and that you are given the presence of mind to fully enjoy and remember each smile, each giggle, each touch from your precious gift from God.

Carolyn Hook said...

I was devastated when your mom broke the news to me at work. I have followed you and your children through her for years. I have concentrated and prayed for Ellie throughout. You have provided so much strength and faith to me and those around me that are praying for you all. Know that we all continue to pray for the Princess Ellie and your family. Through God all things are possible.

Kim Bledsoe said...

Carly, my heart and soul ache and weep for you and your family. God truely blessed you with a sweet and beautiful princess to show how awesome his love is! We lift you and your family up to God in prayer each day and ask for strength and his healing. Your posts and testaments have shown me how awesome our God is! Much love to you all!

Jan Congdon said...

I don't know your family or your heartache. My daughter Jillian has kept me posted of your beautiful baby girl and she asked me to read this blog this morning. I hesitated because I knew it would be this special. You are amazing!! As I sit here with tears for Ellie I also know that God is going to get you through this. God Bless your family and enjoy that baby. Jill and I both talked today about your strength and neither of us can deny the difficulty we would have in the same situation. I will keep you in my thoughts and prayers.

Faith said...

I am praying so very hard. Our God is a God who heals.

E. Bourne said...

You don't know me but I know alot of your friends from Grafton Elem. area. I admire you greatly for your faith in God and the strength you have found with Him. Six years ago I was in the same situation with my son but thankfully for now ours has had a different outcome. Each day is a gift to us and I thank God for that. My prayers are with all of your family and I know that HE will watch over you and His will be done. God bless all of you!

Laura said...

You don't know me but I've been following your blog and praying for your family. I know that God is God in the tough times as well as the good times and if I don't believe that, then He's not really God in my life. That's easy to say when life is good, but your testimony in the midst of such heartache exemplifies this. Your strength is inspiring and I pray that others are drawn to Christ by your family's faith and example. I pray too for your Ellie and for all your family as you walk through this journey.

Trish Freeman said...

Carly,
I am another one that you don't know but I have been following the family's journey since Ellie's diagnosis. Your little pink cheeked princess with the sweet sweet smile has stolen my heart! All I can say is that if Ellie had to go down the path she has, I am glad it way with you as her family. Your faith and trust is truly inspirational. I pray for you all each and every day, and ask God to do his will to relieve any suffering on Ellie's part. You all are so very brave, and I am in awe of you! We lost a son years ago, not to cancer, but a loss just the same. It left a place in our hearts that can never be truly filled but holds all our beautiful memories of him. I am so glad that Ellie is home again where she belongs!
In the name of our Lord, Jesus Christ, I pray.
Trish Freeman

Mary Kidd Flemming said...

Dear Carly,

I too don't know you, but have followed your faith journey through mutual friends @ SPE who love and care for you so much. I too have a daughter with cancer. I have also learned, by the grace of God, that she is not my own, but entrusted to me by a loving God. Your words speak volumes to my mother-heart, I know well of what you speak and I want you to know as your sister in Christ, I am lifting you all up in prayer. Prayers for courage, peace, comfort and the realization that the journey of your beautiful girl and your family is drawing others, even those you don't know, closer to God. Every picture that I have seen of your beautiful princess radiates a joy and beauty that melts the heart. She is a beloved daughter of the King and she sparkles with all of His glory. May God bless you all.
Mary Kidd Flemming (mother of Reagan, 16)

Anonymous said...

This prayer has brought us comfort when we needed it:
God is in every tomorrow,
Therefore I live for today.
Certain of finding sunrise,
Guidance and strength for my way.
Power for each moment of weakness,
Hope for each moment of pain,
Comfort for every sorrow,
Sunshine and joy after rain.
Thinking of your family.

Anonymous said...

I love Ellie's bright sunshiney smiling face! I'm praying for your family.

Stephanie W. said...

My best wishes and deep condolences to your family, Rich. Ellie's bright smile brightened my day every day at work at Old Navy, whether we were having a bake sale, wearing pink ribbon name badges, or displaying a poster with her smiling face. She has indeed touched many people in her short life thus far, and I do hope that she has much more time on this Earth, if that is what is to be. Thank you for sharing her wonderful light with everyone at the store.

Stephanie W. said...

My best wishes and deep condolences to your family, Rich. Ellie's bright smile brightened my day every day at work at Old Navy, whether we were having a bake sale, wearing pink ribbon name badges, or displaying a poster with her smiling face. She has indeed touched many people in her short life thus far, and I do hope that she has much more time on this Earth, if that is what is to be. Thank you for sharing her wonderful light with everyone at the store.

Kallie Mae said...

Hi Blaine family, Love to you all. I have been following your story but decided not to reach out until today. I work in a brain cancer research lab and we have been trying to figure out how we might help with some childhood brain tumors. I work in Charlottesville, but I live in Barboursville. When I first read your story I wanted to reach out right away, because I wanted to bring you anything you might need, or just say hi, or help fundraise. But I waited, and I prayed. Today we found out that one of the chemos we are trying to develop, that my boss (Dr. Benjamin Purow) had written a large grant for, that has potential to kill 90% of some cancer types, or all of it with combination therapy, that this grant is probably not going to get funded. I just want you to know that I know that no loss I could suffer in the research respect is anything like what is happening to you now, and I think of Ellie and other kids like her every day. Right now only 6% of National Cancer Institute grants are getting backed by government research. It is not enough. Please, when you have time, when it's the right time, remember this, and look things up and read, and look at the numbers for cancer research funding, and advocate. I am in tears right now because I don't want you to lose your daughter, because I feel like we weren't fast enough, we didn't work hard enough, we could have saved her. Every person at St. Jude's tonight who knows Ellie is going home depressed and sad. Just know that. Just feel that you are loved, and love your little girl with all your might like you already do, and your son and baby daughter. I hope we meet someday, when the time is right. God bless you.

Mary Jane said...

Carly, you don't know me but I know your Mom. She was my daughter's teacher at Grafton Village quite a few years back (my Sarah is now 16 and a Junior). I, too, have fallen in love with your daughter...indeed, your entire family, through your Mom's postings on facebook. Whenever there has been good news I have rejoiced and when there has been sad news I ache so badly inside for all of you. I cannot even begin to imagine what you are going through. I so admire you for your deep faith. I don't feel there are any words that are adequate for me to say. I will remember you all in my prayers. May your feel the love of the Lord and peace in your souls...imagine Him wrapping his arms around you. He loves your Ellie too, and all of you and He hurts for you. God Bless you all with continued peace, faith, and hope...never stop hoping and believing.

MotheringBoys said...

Carly,
My heart breaks for you and your family. My humanness wants to scream out the unfairness! How did this happen? How did you get to this place, these decisions? But my soul knows that God is surrounding everyone in your household.That He holds you close in His hands and his promise of an afterlife are true. That even when your arms here let her go, you will meet again at the gates of Heaven where she will be healed. I am praying for a miracle. One worthy of your small, beautiful, courageous little girl. One that God can give. Until then, I am praying for you, loving you, and surrounding you with my thoughts. Kathy

Kallie Mae said...

Carly, a new paper came out today in Clinical Cancer Research on a medicinal plant that stops growth of another type of brain tumor with similar mutations (not sure if Ellie has Rb but if she does this could work). It is called Neem--Indian Lilac. This might be a readily available natural product. I am going to read the paper and let you know what I think. My daughter Daisy is a student at PHMS and she has been praying for Ellie too. I want to drop off a basket of mint and ginger teas and other stuff at the church as an early Christmas present, but please look into Neem. I will look into it too and let you know if it looks like it really works. Sometimes the scientific papers are too enthusiastic because people do really want to help--Desiree