Well Duck

No Remission Just Yet
Today Dr. Cripe called with the news.  I still have Leukemia present in my bone marrow.  I am not in remission.  We will most likely move on to a drug that was recently approved by the FDA to treat relapsed ALL.  Dr. Cripe is investigating whether there are any clinical trials that are using this drug in new ways since its approval.  The drug is call blinatumomab and helps my immune system recognize and kill the Leukemia cells.  I will meet with Dr. Cripe at 9:30 on Monday to talk about the plan.  From what I’ve read about this drug, it is given IV over 4 weeks and then there is a 2 week break.  Multiple rounds can be given to achieve remission.  There are some promising results from the clinical trials, but not everyone achieves remission.

So How Am I?
Doing ok.  It’s obviously not the news I wanted.  I’ll need time to process how I feel.  At this point, I’m still thinking about remission and SCT.  It’s just that remission will need to come in a different way than I thought.  While I would prefer the easiest path to a cure, that doesn’t mean that’s the only path or the one I need to take.  There are still effective treatments available.  I’m willing to go through the treatments for however long it takes.  The goal is a cure.

Next Steps
As mentioned, we will meet with Dr. Cripe on Monday.  This will be our chance to ask more questions.  We will also discuss any clinical trials that may be available.  Barring any new information, I would expect to be admitted next week to begin treatment with Blinatumomab.  Once I achieve a 2nd remission, we’ll still move on to SCT.  I’ll obviously update when I know more.

Normal Things
Aside from finding out that I am not in remission, today was a good day.  Lindsey worked, but I felt well enough to get the kids to day care.  I got to wake them up and help get them ready.  Doing all the things that I haven’t done for so long.  It was good to take them to Miss Lindsay’s and pick them up.  Knowing I’ll be going back to the hospital, it was even more precious.

A Duck Dynasty Prayer
Maybe I didn’t cry out loud enough.  Maybe I didn’t cry out often enough.  Did you hear my pleas oh God.  Did you see my tears.  Did you know my desire for remission.  To be cured of this disease.  To be with my family?  Where are you?  But I know the answer.  You are with me.  You are right here beside me.  In this world I will have trouble, but I take heart because you have overcome the world.  Cover my family in your love Lord God.  Help us as we deal with the next few days.  Help Lindsey and I to be normal with the kids.  Let them bask in your love and our love.  Let us be prepared with the questions we need to ask.  Let Dr. Cripe make knowledgeable decisions and find a treatment that will work for me.  My timeline for recovery has increased, but you are with me each step of the way.  There are more treatment options and more days ahead.  Thank you for another day.

21 thoughts on “Well Duck

  1. Rob,
    prayers for you and your family., I was hoping you would get the news that you were in remission however, it will be okay God has a plan for you and when the time is right his will be done. it is hard to be patient when we expect all the right answers and to hear the news we want to hear. Keep trusting in the Lord and know that your family will continue to be in my prayers

    Liked by 4 people

  2. Oh Rob – I am so sorry! You are still in my thoughts & prayers as always! I am retiring from IUH tomorrow so let me know if there is anything I can do to help you & Lindsay as I may have some time on my hands and would love to do whatever I can to lessen your load right now! Just let me know what you need!

    Liked by 3 people

  3. I know this was not the news you hoped to hear today. And I’m so very sorry. I sat and prayed and then went to read the Bible and look for a verse for you. I was distracted by a little book that was meaningful to me during some dark days. I’m ordering it now to be delivered by Amazon so tell the girls to look out for another package!

    Liked by 4 people

  4. I have read everything I could “Dr. Google” today about this new drug. I thank God that it is available for you, and that it has such promising results! We will continue the journey together with so many people walking the path with us! You are going to beat leukemia, and you are going to help others as you travel this road of treatment! Much will be learned from your journey, that will be used to help others! I couldn’t be prouder of you, Lindsey and the kids! We are in this together, and we will succeed! Love you so much! Mom

    Liked by 4 people

  5. Oh Rob I am so sorry. I cannot imagine the emotions you and your family are having right now. My continued thoughts and prayers are with you daily.
    Dear Lord I do not ask for much, I ask for continued good health and happiness for my daughter and grandchildren. Today I ask that you please take care of my friend Rob and see him through this difficult time and see him through to remission.

    Liked by 3 people

  6. Your prayer reminded me of a couple famous biblical sisters that cried to Jesus “If only you had been here our brother wouldn’t have died…” Jesus wept then and I am sure that Jesus wept with you today as when His children hurt, He hurts. Some things are beyond understanding and it is during these times are when our faith is tried and tested. God never promised us an easy journey, but He did promise He would never leave us. I am thankful for you, your testimony, and the fact that there is a new drug with promising results. God continues to carry you and your family. Stay strong!!

    Liked by 3 people

  7. Rob,
    My heart feels so heavy at the news that is the opposite of what we all wanted, but amazingly in my Beth Moore “Living Free” bible study yesterday, Isaiah 55:8 was a theme verse and one of the paragraphs that stood out to me was this:
    “Human intuition points us to what just seems right, but the things of God are seldom intuitive. In fact, you would be better off to figure out what comes naturally and then do the opposite.”
    Gods ways are higher and so are his thoughts.
    I prayed for a baby sister, and got the opposite and look at how well that turned out😉 God knew much better and now I know that to be true and I’m happy He didn’t just give me a sister.

    Below are the lyrics of a song that came to mean a lot to me in 2004. It’s what has been playing in my head the last few hours especially after reading one of the paragraphs in your post, so I wanted to share it:
    Never Alone (Barlow Girl)
    I waited for you today
    But you didn’t show
    No no no
    I needed You today
    So where did You go?
    You told me to call
    Said You’d be there
    And though I haven’t seen You
    Are You still there?
    I cried out with no reply
    And I can’t feel You by my side
    So I’ll hold tight to what I know
    You’re here and I”m never alone
    And though I cannot see You
    And I can’t explain why
    Such a deep, deep reassurance
    You’ve placed in my life
    We cannot separate
    ‘Cause You’re part of me
    And though You’re invisible
    I’ll trust the unseen

    Hold tight to what you know – God is on your side even when His plan seems to take a turn an unexpected direction.
    Love you

    Liked by 3 people

  8. Hi Rob,
    It’s okay the new treatment will probably be the one that keeps you in remission forever.. I loved the Duck prayer..God Bless you and your family over and over again. Sleep tight okay you have so many prayers being sent to you.prayer is power…

    Liked by 4 people

  9. Sorry about the results of the BMA. Your prayer this day was the exact prayer I prayed one lonely night in 2002 when Charles was on hem/onc. I pray that God doesn’t mind when we question where he is; if He sees us, if He hears us.

    I’m down on my knees again tonight,
    I’m hoping this prayer will turn out right.
    See, there is a boy that needs Your help.
    I’ve done all that I can do myself
    His mother is tired,
    I’m sure You can understand.
    Each night as he sleeps
    She goes in to hold his hand,
    And she tries
    Not to cry
    As the tears fill her eyes.

    Can You hear me?
    Am I getting through tonight?
    Can You see him?
    Can You make him feel all right?
    If You can hear me
    Let me take his place some how.
    See, he’s not just anyone, he’s my son.

    Sometimes late at night I watch him sleep,
    I dream of the boy he’d like to be.
    I try to be strong and see him through,
    But God, who he needs right now is You.
    Let him grow old,
    Live life without this fear.
    What would I be
    Living without him here?
    He’s so tired,
    And he’s scared
    Let him know that You’re there.

    Can You hear me?
    Am I getting through tonight?
    Can You see him?
    Can You make him feel all right?
    If You can hear me
    Let me take his place some how.
    See, he’s not just anyone, he’s my son.

    Can You hear me?
    Am I getting through tonight?
    Can You see him?
    Can You make him feel all right?
    If You can hear me
    Let me take his place somehow.
    See, he’s not just anyone.

    Can You hear me?
    Can You see him?
    Please don’t leave him,
    He’s my son.

    Liked by 3 people

  10. Prayers to you all for the days to come. Sometimes God doesn’t answer our prayers exactly how we want him to but He will answer how he sees is best!

    Liked by 3 people

  11. Rob
    Keeping you and your family in our thoughts and prayers. Your courage and faith amazes us and we KNOW that ” God’s got this!” We don’t understand why His timing isn’t the same as ours but we know He has a plan…. in HIS time!
    Our prayer is that you and your family are kept strong and faithful and will soon be in remission and then cured by His grace.
    With much admiration…..
    Dan and Cindy Hanenkratt
    Dorothy Keever

    Liked by 3 people

  12. Grant me, O Lord my God, a mind to know you, a heart to seek you, wisdom to find you, conduct pleasing to you, faithful perserverance in waiting for you and a hope of finally embracing you. Amen

    A prayer I use often. I wanted to yell at God yesterday …My God My God why has thou forsaken me and remembered this song of Psalm 22…

    I pray that we all trust God in His plan and that His will be done and that we have the wisdom, strength, and the perserverace to accept His will and shine like Him to all we come in contact with!

    Love to you and Lindsey and the kids.
    Aunt Liz

    Liked by 3 people

  13. Rob,
    I have been reading you blog and praying for you and your family. I am inspired by your faith, humor, and honesty as I watch you walk this difficult journey. As someone in your exact stage of life, I am praying for strength and calmness for you all. Thanks for being so transparent.

    Liked by 2 people

  14. I only know you through my daughter, Amanda Campbell, but I hope it helps to know that I’m praying for strength and healing for you and strength and comfort for Lindsey and your precious children. May God bless.

    Liked by 2 people

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