Friday, June 22, 2007

The beginning of the end?

I wasn't sure how to title this post, as I think the end probably began a long time ago. But once again it seems we've hit what may prove to be the end of the road rather than a mere bend.

I have stopped responding to Decitabine, and my doctors at Ellis have basically said there is nothing more they can do for me. They recommended contacting my transplant doctor at Barnes to see what they could offer me. I don't qualify for any of the current clinical trials and though a second transplant was mentioned earlier in the week, my phone call with the doctor this evening was less than promising as he summed up a second transplant as the "height of medical futility." His recommendation was a type of FLAG treatment, which as some may remember was also recommended back in February. We chose not to go that route then, and I don't see why I would choose to go that route now. I was told that if I could achieve significant remission with FLAG (assuming I survive the drugs and still have enough bodily function to qualify -- which with these drugs is a long shot) they may consider a second transplant at that time. Given the fact that I have never acheived remission I feel they are basically trying to pacify me with a treatment that is basically a death certificate. Being told that if I am admitted I can expect to never leave the hospital isn't exactly encouraging.

For now the plan is to go to Ellis Monday morning for lab work and make as many phone calls as it takes to get as many second opinions as possible, and try to get in to see my local oncologist on Tuesday before going up to Barnes also on Tuesday, where we will discuss the options with my transplant doctor. He said I can plan to be admitted from the clinic -- I may take my walking papers and come home to die. Though, I am not naive enough to believe that death for me will be either at home or easy. This is when you sign the papers telling your family it's o.k. to pull the plug, because that's basically what you know it will come down to.

So, needless to say, we ask for your prayers, that someone will come up with something -- that the doctors may have a change of heart about a second transplant. I know it is a longshot, and I know it is a horrible, horrible procedure. I know that better than anyone. But I don't want to be told I'm out of options, and I don't want the only options presented to me to be ones that are merely a terrible way to die.

Storm heaven for us, please. We need all the wisdom God can give.

80 comments:

Denise said...

I will storm the heavens for you and your family. You don't know me but I wanted you to know that many people you don't even know are praying hard for you and your family!!!

Eric M Schumacher said...

We will pray!

John 19:10-11 So Pilate said to him, "You will not speak to me? Do you not know that I have authority to release you and authority to crucify you?" Jesus answered him, "You would have no authority over me at all unless it had been given you from above...

Anonymous said...

Sorry about that

Perhaps the doctors can give you a radical treatment that hasn't been done before to prolong your life for as long as possible. what that would be I don't know.

Jessica said...

I don't know what to say. I have no idea what it must feel like to get all of this information from the doctors. I will be praying harder than ever for you! This post has just brought me to tears b/c I so want God to give you a miracle! Don't give up! I'm praying for you and your family.

jtcosby said...

Praying Amy. So praying.

Jenny said...

I will pray for you, your family, and the doctors too.

dillyweed said...

May God bless you with wisdom, strength, healing, and peace. You are in my thoughts and prayers tonight. I'm going to go hug my husband and pray for you together!
You are so very much loved (even by strangers like myself).
Go collect some hugs from your boys and soak up their love.
And please keep us posted on what happens this upcoming week.

Melissa said...

Amy, I am laboring with you in prayer. We are Strangers, but sisters in the Lord. May God grant you immeasurable comfort and grace for all the days to come, no matter their number. Praying for your family as well, as their heartache over watching you suffer has to be overwhelming.

Marc and Charity said...

Storming the gates of Heaven, from Wales!

Anonymous said...

Amy, I've been praying for you and will continue to pray for you. God is good!
Donna W.

Leslie said...

I will pray for you Amy.

Amy K said...

I am praying! God IS a God of miracles still today. Even though I am a stranger to you, I will hold you (and your family) up in prayer for as long as you need!

ManyBlessings said...

Another stranger praying for you.
dawnz

Anonymous said...

Amy, Brandon, Gary,

You are on our minds so often each day. Our hearts are with you always. May the Lord continue to give you strength now and comfort to each of you in mind and heart. We pray for wisdom for you and the Doctors as they seek alternatives.

Our Lord said, "I will never leave thee nor forsake thee." Heb. 13:5

We Love You,
Don and Lilan

Barb said...

I still believe you'll get your miracle, Amy, and I'm still praying for you.

Anonymous said...

Praying. Always.
Much love in Christ...

ella said...

Another stranger praying for you.

lightshines said...

Still praying for miracles and healing. You are loved.

Pamela J. Edkin said...

Amy, I have been reading your blog and praying for you for months now, another "you don't know me but...". I was introduced to your blog by my pastor's wife. As I read this post I was reminded of Luke 11:5-8. It is the passage that follows the familiar section where Jesus is teaching the disciples how to pray and prior to the ask, seek, knock passage. Jesus reminds the disciples that when they are praying and it seems there is no answer or the answer is no, don't give up praying, begging, or asking boldly for your request "......because of his persistence he will rise and give him as many as he needs."
I will not give up my prayers for you now!

Wendy said...

I will pray for you too, Amy.

Jules said...

I'm stormin' heavens right now. Love to you and know that I'm praying.

Tammy C said...

Will keep you and the family in prayer.

Anonymous said...

Keeping you in prayer.

May He give you much wisdom, as well as all who you consult for options.

In Him,
The Gould Family

jennie said...

You dont know me, I was asked to pray and directed her awhile back and have followed your postings since. I have felt compelled to, I pray for you daily and will continue to do so.
Hugs and prayers.

Your Heavenly Father said...

My Dearest Children,
I love you more then you will ever know. I have wept when you have wept. I have heard your tears and your prayers. I have sent the Holy Spirit to whisper in your ear, "This is the way, walk in it."

My Daughter, Hold on to this promise: I will be with you every step of the path I have caused you to travel. You have never been out of My will. You will be healed, you will have to trust me for the timing and place. Trust Me, Hold on to Me, I never fail.

My Son, this path has been hard but you have walked with a strength not your own. As time goes on you will need to rely on Me more than you ever have. I will be there, and nothing will come to you that you, in My strength, will not be able to handle. Hold on to this promise: "I am with you always."

My Children, Come to me, and I will give you rest. I will give you a peace that will pass all understanding.

I love you, My child.
With you always,
Your Father who is in Heaven

Olive said...

He is mighty to save. Amy, I am praying.

Anonymous said...

Amy dear, Our God is still a God of miracles, and that is what we're praying for you here in Springfield. Spend much time in prayer and with Brandon and Gary. Thank you for the update. May God be with you every step of the way.

Love,
Jackie

Jenni Halley said...

My heart aches for you in facing this reality...yet, you remain faithful and continue to believe that prayers will change this. We will pray diligently for them to find a treatment or some option for you, and for you to find peace and strength.

Laurel Wreath said...

I am praying honey, praying hard.

Munchkin Land said...

Oh me... I'm here via Wendy at Showered with Grace. I will defintely keep you and yours in my prayers. I'm hoping for a miracle too!!

Laura said...

Praying for a miracle for you.

Anonymous said...

Amy,
When in church tomorrow, I will ask those in attendance to storm the heavens for you. We have some powerful praying people in our church as there are in so many other churches around the world.

We know that God will hear our prayers on your behalf.

Commit your way to the Lord; trust in him , and he will act. Ps 37: 5

We are so sad but praying for you this day and the days to come.
Uncle Cliff and Aunt Karen

Kili @ Live Each Moment said...

We will be praying.

Kim said...
This comment has been removed by the author.
Kim said...

You know we will be praying for you, Brandon, and baby Gary.

Kim

blackpurl said...

my prayers are with you!

Leigh said...

Amy,

Emily Baker sent me your way today. I am in tears as I read your blog, but not because I am fearful for your death, but because of how precious you are to me. You are a MIGHTY vessel of the Lord, Jesus Christ, who has affected my life, my marriage, my friends and my family, and helped to bring me closer to my precious Savior. I cannot thank you enough for your continued testimony of God's grace. I am so unworthy of the blessings you have brought to my life. I praise the Lord for you and your family. I will be praying and asking everyone I know to pray for you. What a mighty Savior we serve, who understands everything you are going through and uses all for His glory. How worthy He is to be praised!

For now, keep breathing the breath that God gave you to breathe to worship Him. (Listen to Breathing the Breath by Matt Redman)

Love,
Leigh Taylor

Anonymous said...

Praying for you

I hope you find peace in all the days of your life, however many you are given

eclecticeducation said...

I am so sorry for you. I will be praying.

PEZmama said...

Bless you, sweet sister, and your precious family as well.

I will be praying and have asked my readers to do the same.

Christine said...

We are praying for you, dear sister in Christ.

Anonymous said...

Storming Heaven for you and spreading the word to all I know to pray for you.
Tracy
(Australia)

Joyful Days said...

Hands to heaven in prayer for you.

Wendy said...

Oh Gosh Amy, I just don't know what to say. I have been reading your story for quite some time now and I am just heartbroken for you. I believe in a God who provides healing and a God who provides comfort and peace. I will be praying for all three for you. I can't imagine the many range of emotions you are going through but know that there are many, many people who are approaching the throne of God on your behalf.

Lyndsey Kate said...

Precious Amy ... I'm yet another who doesn't know you personally but feels so privileged to have been allowed to walk this journey with you, praying for you and your family along the way. You may never know this side of heaven how many people you have touched with your story, but I'm certain that it is many. Praying fervently for you, your family and your physicians. May He fill you with peace as you face the days ahead.

Mississippi Girl said...

Praying for you!!!
Jennifer R.

Anonymous said...

Amy, Brandon and Gary, So sorry to hear the news that the doctors have told you. However, we know ONE who can defy the doctors if He so chooses this side of heaven. May God bless you, Amy, and give you peace and comfort as you have to face so many hard decisions. We will be praying hard for God's will to be done. We so want you well and strong. We love you dearly.

Grandpa Ed and Grandma Linda

Paulette said...

Hello Amy,
This made me cry because I was hoping for different results.
I will continue to storm heaven for you just as I have always done.
I cannot even imagine what this is like for you, even though my dear friend went through all this with her cancer, and through her eyes I can see yours and know in retrospect what you are dealing with.
I think you truely are one of the most courageous young woman I have ever known. Your faith in this battle as was Linda's (my dear friend) was to be admired.
I will continue to pray and seek God on your behalf and may he give you a peace that passes all your understanding.
You are loved dear Amy

Breathing His Joy said...

Amy praying for you to have your miracle and the peace of God breathing into every inch of your body. Thank you for being a blessing in my life. Your passion and faith for Christ Jesus is an inspiration to me. Heaven is being stormed with prayers for you tonight!!

Linds said...

Storming heaven for you, Amy. So many prayers from England.

Mark and Rebecca said...

Praying for you.

Katie said...

My prayers are with you and your family. Our God is STILL a God of miracles. I BELIEVE! Stay strong.

Susanne said...

Praying for you and your family and doctors, Amy!

Anonymous said...

God be with you and your family. We will pray for all of you.

Anonymous said...

'At the moment we ask, He will answer,
He is never asleep or away;
He doesn't remove every burden,
But He always gives strength for the day!' Rugh K. Zook

My heart just aches for you - it's something each of us must face someday. May the prayers of all those who mean so much to you, strenghten you & your family at this time. Praying for you in Ireland.

Carrie said...

Amy, we have been praying for you all along. Your spirit has been so "worthy" through this. We will continue to pray for your healing.
In Christ's love,
Carrie

Anonymous said...

I check your post alot and lift up prayers for you daily. If I could reach out and hug you I would and make it all go away. You are a strong woman to have battled all this. I will continue to uplift you and your family in my prayers.

BEcky

annb said...

Amy, I can't even begin to understand what you're going through, but will keep you and your family in my prayers. I pray that God will comfort you and guide you and your husband no matter what happens. I pray for your healing and for peace for you.
annb

Carol (Aaron's mom) said...

I was praying for you this morning Amy and could feel your sense of being at the bottom and it looking like there is no where else to go, and I felt reminded in the spirit that He is the GREAT PHYSICIAN--- even when all other Doctors are at a loss as to what to do---Jesus is our Healer and Deliverer. Still praying and petitioning the Lord on your behalf for a complete healing and miracle for you.

You are loved and thought of often, and are such a blessing in so many ways.

Theresa said...

I am praying for a Miracle from God. His peace be with you and your family!

Anonymous said...

Just another reader...prayers for you from Florida. Strength to you and your family.

Tracy said...

Amy, you have been on my heart all day. I don't know you, but you are an example to me of keeping your eyes on God and His sovereignty and goodness even in the middle of a trial harder than I can imagine. I am praying for you!

Mindy said...

Dear God MOst High,
I just want to pray for Amy and her family. Lord my prayer s are many. I pray that you will give Amy your peace and comfort as she faces the days to come. I pray that you'll give her and her family YOUR wisdom and understanding of what should be done for Amy.
Lord I ask that you will give her comfort from whatever pain she is or will be expiriencing. I ask that you will go with them ALL the way.
And Lord mostly give them all you love so much that they feel it so REAL that it is tangible to them.
In YOUR Name I pray -
Amen

Will continue to pray for you and yours!

Dunn Family said...

Dear Amy,
There are no words, only prayers!
We have been and will ocntinue to storm the Heavens for you!

Love,
Gina

BooMama said...

Praying for you....

Kimberly said...

You are in my thoughts and prayers!

Pam said...

Storm the heavens...I love the thought of it and I know there are so many people out there doing just that for you.

Angela said...

Amy, I don't know you personally, but my heart aches for you and your family. you have my prayers!!!! In Christ, Angela

Anonymous said...

Trust Him when dark doubts assail thee
Trust Him when thy strength is small
Trust Him when to simply trust Him
Seems the hardest thing of all.

Yellow said...

Dear Amy,
I am new to your blog and I wanted you to know that I am praying for you. May you find a peace in God that passes all understanding, may you find healing occurring in your body, soul, and mind....may you have good, restful nights and lots of joys each day. So many are standing with you and praying for you. "Joy comes in the morning."

Susan said...

"But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us."
I pray that God's will be done in your life and that you and yours are at peace and in agreement with whatever that is.
Have you contacted the University of Pittsburgh Medical Center? They're pioneers in the field of transplantation. The dept head/lead surgeon's name is Starzl. At least when I worked there.

ann said...

Praying for you in North Carolina.
Romans 8:18 For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.

Undeserving said...

We're still here for you both and will be on our knees for you.

M & F

jmvanwinkle said...

I will pray for you, your family, and the doctors too.

imoldfashioned said...

Another one who knows you only through your blog, which has been such a blessing. Praying for you and your family.

Zoe said...

Hi Amy, I don't know you personally, but Faith Schwartz passed your story along to me. I am praying for you right now. Who knows what the Lord will do, but we know He can and sometimes does work miracles. Thanks for your honest post, and I will pray that the Lord grants you peace in this time.

-Zoe

Brenda said...

This news is heartbreaking, but the Lord will not let you down.

My prayers for you continue.

ZooKeeper said...

Prayers up. Just found you via MiryClay over at Homeschoolblogger. I'll share this privilege of prayer for you.

bubbebobbie said...

Amy the Lord has numbered your days before even one of them had begun. Until that number of days comes about, no one can tell you different. And more than the beginning of an end, sweet sister in the Jesus, in Christ there is no end only beginnings. My heart joins yours and that of your family as we beseech our Father to heal you.
Because of jesus, Bobbie

Donna Miller said...

Dear Anita,

I am Balaea (Davis) Miller's Mother-n-law. I work with Rachel at Care Net (well I guess I should say used to due to my recent diagnosis of colon cancer that has spread). When Rachel told me last week that your daughter was praying for me I was honored. I want you to know that as one mother to another my prayers Go before the Greatest Care giver and comforter for her on a almost daily basis (somethimes several times a day). Rachel keeps me updated and I just got the blog sight and just wanted you to know your daughter is a such an example of faith, trust and love to her God and Savior. May you feel the nearness of Him these days and as you sit by your daughters side wanting so badly to take it all away for her...but there is one who lent her to you for a time who will care far more we created ones can begin to imagine. held by His righteous right hand...Donna Miller