Thursday, July 5, 2012

What's Next..

Sorry for the delay in updating - we have had internet trouble.
This will be a very long post, we hope you will keep reading.

Tuesday's appointments were definitely more mentally draining than Monday's.
The praise from Tuesday was that all medical test results were good and Elena's heart, lungs, kidneys, and liver are all functioning within normal limits.
The hardest part was how overwhelming it is to hear what short term side effects will happen to Elena as a result of high dose chemo and total body radiation. It is just as overwhelming to hear the list of long term side effects that can happen.  While these lists are long and scary, we have to choose to go forward with a bone marrow transplant in hopes of a total cure from cancer for Elena. 

Whether Elena's next bone marrow test is positive or negative for leukemia, we do have a plan to move ahead with a bone marrow transplant.

Just last week, Egleston received approval for a new local research study. This study is for children who are MRD positive heading into transplant. Elena would be the first child on this study, but not the first child to receive the new drug used in the study.  This drug is not a cancer killing drug. It is a "mobilizing agent" designed to move the cancer that is resistant and "stuck". We know that Elena's is. The drug will move the cancer out of the nooks and crannies of the bone marrow so that it can be killed by the high dose chemo and radiation that Elena will receive in the days immediately before her transplant.  This is currently the best option we have.  We are thankful this study opened and we are thankful that we can remain in Atlanta for Elena's treatment!

Here is a time line of the plan:

July 9th
sign BMT consent forms
Elena's bone marrow aspirate
BMT nurse visit
radiation simulation

July 10th or 11th 
find out the results of Elena's bone marrow aspirate

July 16th 
Elena admitted for bone marrow transplant  (will be in the hospital for 4-6 weeks straight)

July 25th 
Transplant day!

If God answers our continued prayers for Elena's bone marrow test to be MRD negative (ZERO leukemia cells detectable), then Elena will have a "standard" bone marrow transplant at Egleston not on the new study. The time line would remain the same.
The only thing that would halt the time line is if Elena's test results show an increase in disease (leukemia) in her body. Please pray that this will NOT happen.

Needless to say, Elena has felt a little overwhelmed the last couple of days.  She is hearing everyone say that her bone marrow transplant (BMT) will be her hardest battle yet. She has already battled long and hard - 29 months of chemo (April 2009 - August 2011), news of a relapse (February 2012), more chemo, a total of 49 days in the hospital, hearing a BMT was in her future, and constant changes in plans relating to when her transplant would happen. She is weary of having to prepare herself for more. We all are.

She has definitely had less than ideal summer plans.  While her friends are planning fun activities and swimming, Elena is trying to keep doctor’s appointments straight, considering what bone marrow transplant will be like, fearing total body radiation, and wondering when she will ever be able to start school.

Elena's transplant and our time apart is getting very close.  We are aware that the road ahead will be very long and very difficult. In the coming days, we will share more details about BMT with you.  Thoughts of what is still to come aren’t far from any of our minds, but we are going to try to push those thoughts aside and focus on enjoying right now and these eleven days before admission into the hospital.
We ask you to please pray for God to renew and restore us.  We ask that He will give us lots of joy and fun before we go in for her BMT.  We ask Him to help us focus on today and not think through all of BMT.  We don’t want to miss any fun before being admitted because of dread.  We ask for God’s mercy on Elena during BMT.  Ultimately, we pray that all of this work and effort will pay off in a cure for her.

In Him,
The Tates

“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.” Isaiah 26:3


  1. You are always in our thoughts and prayers - love to all - The Slater's

  2. My prayer for all of you is & will be Hebrews 10:23, "Let us hold unswervingly to the hope we profess, for he who promised is faithful."

    My new favorite song is Steady My Heart by Kari Jobe & when I hear it the chorus becomes my prayer for is the chorus:
    Even when it hurts
    Even when it's hard
    Even when it all just falls apart
    I will run to You
    Cause I know that You are
    Lover of my soul
    Healer of my scars
    You steady my heart

    Love you all!
    Jenny Thompson

  3. Praying for peace and pleasure during the next 11 days as you enjoy your time together with family and friends! Lifting you up as you prepare your heart, soul, body and mind for what lies ahead. We love you

  4. We have a friend in common named Apryl, and she gave me the link to your blog. My son has relapsed T-cell ALL and is currently at Children's in DC undergoing a BMT. In fact, today is his day 0 when he receives the donor marrow! So far, all has gone well. I know just how you feel going into is frightening, but it is your only choice and so you are hopeful as well. I wanted you to know I'm thinking of you. You are 19 days behind us! Let me know if you have questions. Jackie

  5. Thinking and praying for you guys in the days ahead.
    Linda del Valle

  6. Thoughts and prayers continue for you, precious ones!

    Jan Kennedy