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Saturday, May 11, 2013

Going home

Thus far, our experience with MD Anderson has been … frustrating. We know from the testimonies of so many it is an amazing place for healing and that is why we are here. However, we are discovering getting to a treatment plan may be a more lengthy process than we hoped. We maintain MD Anderson has the most experience treating sarcoma – again that is why we are here. But it is still a paradigm shift from the personalized and expedited care we received in Oklahoma City.

We have had a lot of difficulty communicating with Dr. Benjamin’s nurse, who is the only direct point of contact within his staff. When we do talk with her, she rarely has the answers we need or even listens to our questions. Long story short, we found out yesterday we will not know the results of my pathology until late next week at best. This means it is very unlikely I will have an appointment with Dr. Benjamin next week to discuss a treatment plan. I also found out he will be gone (not for sure of the start date) until early June. So, I may not have a treatment plan for another four weeks. To add to this, they scheduled my MRI at 8:15am on Mother’s Day. So, the one thing communicated to us yesterday by the nurse was that we can go home tomorrow instead of waiting around in Houston for another week with no answers.

I am frustrated because there is no closure. We came to Houston anticipating a treatment plan because of the four weeks of extensive preparation and testing in Oklahoma. We provided (in advance) every lab, operative, pathology and clinic report, every film and scan. We came with a diagnosis. We were in search of a second opinion to feel confident with our plan of attack. And now, we are heading back home with no more answers.

You have to understand, I live every moment of every day knowing I have poison not only in my right forearm, not only in my vertebrae, but perhaps throughout my body (in microscopic traces). I wanted it out the moment I first heard on April 12 that it was in my body. Regardless, I know chemo will be the first step.  Although I’m not excited about that, I am ready to lose my hair in order to kill the poison. . . and this is where my frustration lies. I feel as if we are so close to a treatment plan, and yet so far away. The news yesterday was another hope deferred – something that is becoming all too familiar in this unexpected journey. I will let Chris provide specific prayer requests. But in broad terms, my prayer is that my hope will remain in Him and not in man.

I am very thankful for my dear friend, Melinda, who has walked this path more than once. She reminded me yesterday, that although I may feel like a number at MD Anderson, I can rest assured the Creator of the universe knows the number of hairs on my head (which, ironically will be very few in the months to come). I have to rest in the Truth He knows me. None of these interruptions are a surprise to Him. He is the one thing we can hold to right now.

“The Lord is good, a refuge in times of trouble. He cares for those who trust in him.”  Nahum 1:7

Specific prayers:
-- Pray for God’s continued healing of Kelsey’s body in this time of waiting.
-- Praise God for His provision through friends and divine appointments.
-- Romans 12:12 – “Be joyful in hope, patient in affliction, faithful in prayer.”
-- Pray for clear communication with Dr. Benjamin’s staff in the days to come so we will know when we need to return to Houston and that it will be soon.
-- We are thankful for a great night of sleep last night, a day without any appointments and beautiful weather.
-- Pray for safety as we travel home. Also pray Kelsey’s back would not be so sore on this trip.




  1. Love the pics of Alexa on our back porch :). Praying for healing during this wait. I guess there is a reason for the wait. Our house is always open when you need it!

    1. She LOVES the backyard, porch and driveway! It is like her own private park.

  2. Chris and Kelsey,

    I'm so sorry to hear that this wait is going to be so long! I shed many tears of frustration waiting for phone calls to be returned from Sarcoma Center nurses. Just keep reminding yourself that for me, that was two healthy years ago. Unfortunately, long waits and wading through the MDA machine is part of receiving their expertise.

    Have you asked if Dr. Benjamin can leave information with one of his colleagues to get you started on a treatment plan before early June? Like a "if the pathology is ____, do ___" kind of thing? I wonder if there is someone else in the department you could see in his absence.

    I can relate to the feeling that you want to do something and do it now. It feels like the clock is ticking and there is poison in there. Trust the doctors--if Dr. Benjamin felt his absence was going to be detrimental to you, he'd make sure you saw someone else. Trust the Lord--He controls every cell, the vacation plans don't.

    I'm praying for you!


  3. Kelsey, I am frustrated for you too. It does seem as though the process at MD Anderson is at a snails pace. Take this time to build your strength and prepare your mind and enjoy not being stuck by another needle, for the treatment ahead. I know that you don't like this poison in your body. The treatment can be very, very tough. I bet even if you do lose your hair, you will still be beautiful. I do know how though this is. You do have God on your side. He has all of the power. <3 Happy Mother's Day <3
    God Bless,
    Judy Voth

  4. Glad you are probably in Dallas by now. Hope you get to respite there for a bit. Praying for you, Chris as you do your presentation. God's timing is always perfect, even though it feels tooooo long to wait. Do you know when Dr. B leaves yet???

    If he's like my favorite "scientist" dr. at UT San Antonio Med, he'll keep in touch and advise from wherever!!!! Modern tech allows for amazing contact when you'd think it won't. Trust the Lord to do "amazingly abundantly above what we can think or imagine.:!!!!


  5. Philippians 4:19 And my God will meet all your needs according to his glorious riches in Christ Jesus.