Last night I had dream.  I was living in an apartment complex along with some other couple friends of ours.  Rich was doing this experiment for a class where I was supposed to put my cat, armed only with a flashlight and a wrench, down this vent filled with crocodiles to see if it could survive.  I kept asking “Why can’t you use someone else’s cat”?

Today we will get the official results of the past two weeks of tests and scans.  We will also find out if Tuesday was randomized for one Transplant (Autologous stem cell rescue) or two.  We are faithful that she will get what she needs, while simultaneously willing it to be one.  It’s very risky.  Especially in the midst of RSV and Flu season.  It’s scary to think of poisoning your child to the brink of death and than waiting for her body to accept back her clean cells.  Terrifying to think of doing it twice.  I really do want to be faithful, but my inner control freak is getting the best of me.  There is a power struggle going on between blind faith and mother’s instinct.  Tuesday looks so good.  She dances and dances and then some more dancing.  She is so full of Joy.  She doesn’t look sick and this is the hardest part because that means nothing.  This is a sneaky, evil disease that likes to come back, even after chemo.  Even after transplant.  Even after Radiation, and Acutane (go figure?) and antibody treatments.  So the question remains, what is better, one transplant or two?  
A very dear friend of  mine gave me the following, which I have hanging on my fridge, because that is where you hang these things.
“Faith is about risk.  Too many people want it to be without risk, and because it isn’t, they choose not to believe.  To have faith is to have courage.  Faith means taking a risk that God is really there.  There is a reward for that risk, eventually, and it’s called KNOWING.  Eventually, faith gives you evidence of the existence of a higher being.  Without taking the risk, you can never get to the knowing, and you reinforce your disbelief.  Risk is the currency of life, and in the same vein, it’s the ticket to meeting God.”
So again, today, we step out in faith.  She will get what she’s supposed to have.  And if that happens to be two transplants, then we’ll just jump off the study, I mean, well, I don’t don’t know what I mean.  Stay tuned. 
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19 Responses to

  1. t h a i t r a i t says:

    Praying for strength for all of you. And thankful that Tuesday is dancing.

    Love, love, and more love,

    t & L

  2. Jen B. says:

    Praying for all of you…especially little Tuesday! I'm sure she'll get exactly what she needs. Have faith… God will take care of her! (& you, too!)

  3. Dawn Johnson Warren says:

    “When you have come to the edge
    Of all light that you know
    And are about to drop off into the darkness
    Of the unknown,
    Faith is knowing
    One of two things will happen:
    There will be something solid to stand on or
    You will be taught to fly”

    Funny thing about going through this kind of insanity is that you seem like a super hero who can fly to all of us on the outside, while to you it’s just living, trying to remember to breath. I only know you through this blog but you have touched me as a graceful woman who has been taught to fly.

    Continued prayers for the whole family as you each have your own challenges through this experience. Prayers that your faith stays strong and that soon life will return to normalcy as you celebrate each year to come with Tuesday as a survivor.

  4. Christy says:

    What a beautiful friend you have to give you such an inspirational saying.
    Continue your faith… it has gotten you this far.
    Hugs to you for being on this tremendous journey and marching through like champions!
    Love that Tuesday is dancing!

  5. mames says:

    i think i am going to write out that quote and place it next to my bed. i needed that today, thank you.

    tuesday has all our prayers, i can see her dancing in my mind’s eye. and it is just beautiful.

  6. Bre says:

    I can perfectly picture Tuesday dancing round and round. We all had faith that she would do so. So keeping with that….I have faith that she will receive the best care and will continue to dance.

    Love & Hugs,
    Bre

  7. Jennifer L says:

    You must be a very strong person to have not already fallen apart at the seams. I will continue to pray, hope, have faith, whatever it is, for you and your family. I hope you all have a very merry holiday

  8. albert & angela fontenot says:

    JK,
    So happy for you guys right now. The balance between blind faith and a mother’s intuition sometimes seems impossible to find. Rejoice in this day and the knowledge that even as the war rages on, This battle has been won by Tuesday. What a wonderful victory. Congrats on the cclean scan. I’m praying that God will give you guys exactly what you need as far as transplant.
    love,
    angela

  9. BoufMom9 says:

    Jess,
    Do not waiver. Faith is your comfort, so cling to it.
    Tuesday is God's great gift to us all and He has so many wonderful things planned for her. He isn't finished yet.
    Have faith, Jess.
    KNOW. BELIEVE. TRUST.
    Love & Prayers,
    Debi

    If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus. Philippians 4:7 NLT

    When peace like a river attendeth my way,
    When sorrows like sea billows roll;
    Whatever my lot, Thou has taught me to say,
    "It is well, it is well with my soul."

    Have a listen, Jess:
    http://www.youtube.com/watch?v=UCCLTm1TMeQ

  10. Leslie says:

    Choked up Grammy here, utterly speechless!

  11. Lisa says:

    In addition to all the wonderful things said, how about having faith that your mother’s intuition hasn’t failed you yet?

  12. freedmanning says:

    Where you find the inner resources to keep everyone up to date with not only timely and pertinent details through your blog, but do so with such insight and prose? I ran into Ashleigh from Peds Path today at–of all places–the gynecologist office(my current rotation). Everyone is following everything, but you probably knew that. Evy randomly pipes up with questions and prayerful moments for Tuesday and all Whitts. I follow her lead–the intuitions of the innocent.

  13. * TONYA * says:

    It’s only 1 honey. I’m so relieved for you … and of course for miss tutu. Yet another day of great news. Your family is truly blessed. Love you guys. Smooches.

  14. Leslie says:

    He’ll Find A Way
    Words and Music by: Donna Douglas
    From the CD: He’ll Find A Way
    Artist: Billy and Sarah Gaines

    At times the load is heavy
    At times the road is long
    When circumstances come your way
    And you think you can’t go on
    When you’re feeling at your weakest
    Jesus will be strong
    He’ll provide an answer
    When you found all hope is gone
    He’ll find a way

    For I know that if He can paint a sunset
    And put the stars in place
    I know if He can raise up mountains
    And calm the storm-tossed waves
    And if He can conquer death forever
    To open heaven’s gates –
    Then I know for you, I know for you
    He’ll find a way

    And at times your heart is breaking
    With a pain that’s so intense
    All you hold are broken pieces
    To a life that makes no sense
    He wants to lift you up and hold you
    And mend each torn event
    He’ll pick up the pieces
    That you thought had all been spent
    He’ll find a way

    For I know that if He can paint a sunset
    And put the stars in place
    I know if He can raise up mountains
    And calm the storm-tossed waves
    And if He can conquer death forever
    To open heaven’s gates —
    Then I know for you, I know for you
    He’ll see you through
    He’ll find a way

  15. Sharlene says:

    I HAVE FAITH. I HAVE FAITH. I HAVE FAITH. And Tuesday’s journey has only strengthened my faith. That child will go on to do more great things. I know it.

  16. Shannon says:

    That is a beautiful, inspirational quote. I too have faith that God will take care of Tuesday and see her through the next steps, no matter how risky & scary. So relieved for you guys that its only one transplant! Love to you all!

  17. Aunt SuSu says:

    Jess, I know someone that had all the faith in the world and if she was here you know that Gram would tell you that just have faith in God and in yourself and in Tuesday as we all do and Tuesday will be alright. She is a dancing for all of us.

    We love you,
    Aunt SuSu and Uncle Jim

  18. Kristy says:

    Hope you’re still enjoying the dancing, JK. Little Miss TuTu’s light shines so bright. I love how she has just blown away all of the doctors’ expectations. She’s got good things coming her way. We’re here to support you through the difficulty of the transplant. But for now and until then, enjoy some more of that dancing. Much love, Kristy

  19. Brandi says:

    JK,
    I am praying daily for Tutu and I know that God will make sure this child gets exactly what she needs. I read the post above and am soooo glad she got picked for one treatment. I love the saying you have on your fridge.