Houston – Day 1

It was an early alarm this morning.  5am.  After two showers and plenty of coffee we took the short drive to MD Anderson for our first appointment.

We arrived by 6:30am to register, and then waited to meet our doctor.

Once he arrived we discussed Courtney’s case, and he reviewed her most recent PET Scan results.  Right away he assured us that two specific areas we were concerned about (adrenal glands, and ovaries) were not anything to worry about right now.  He did want to take a much closer look at the lymph nodes in her neck.

They did a scope of her nose and throat, just to look for any abnormalities, and found none.

The discussion then turned to the original pathology, the diagnosis of Leiomyosarcoma.  He talked about how rare it is, and how even more rare it is on the head where Courtney’s appears to have started.

The doctor ordered some additional testing.  He wants to confirm the diagnosis before coming up with a specific plan of care and treatment.  He feels there is a chance the diagnosis could be wrong.

In order to do this, he’s ordered a brain MRI for later tonight.  This will involve a two hour procedure and include contrast fluid injected via an IV.   This is necessary, really just to rule out a few things.

He’s also ordered an ultrasound of her neck, which is scheduled for early Friday morning.  This will give him a better view of the lymph nodes.

In the meantime, they are re-reading the pathology slides of the original tumor here at MDA.  Pathologists will finally get a chance to look back at the original cells from the second biopsy.

The doctor feels this could shake out to be one of three things:

  1. Leiomyosarcoma
  2. A different type of sarcoma
  3. An aggressive type of Melanoma that can spread to any other parts of the body.

A day that we’d hope to get answers has turned into a day with more questions.

We still feel strongly that we are in the right place.  If the original diagnosis turns out to be wrong, we will be grateful knowing we got a second opinion. If they confirm Leiomyosarcoma,  then we’re still in the best place to discuss treatment options.

They are planning a Tumor Board Conference tomorrow afternoon, to discuss her case as well. This should provide a lot of insight. 

So we wait.  Oh, how we hate the waiting.  I’ve never been a patient person.  It is hard to believe that it has only been 3 weeks tomorrow that we even started this journey.  It feels like so much longer.

We are having to learn to live life with uncertainty.  This might be the first lesson of dealing with cancer that we are really grasping.  As much as we want to know now, and as fast as we’d like to know it, we have to remember that God’s got this, we’ve got great doctors, and we’ll know soon enough.

Even in the midst of this frustrated waiting period God shows up, in little ways.

Courtney had to have blood drawn, and you know they use needles for that right?  Of course she was nervous.  When we got to the lab, it was massive.  The whole MDA complex is massive!  But this place is a well oiled machine.

We signed in electronically at the lab, a few minutes later they called us back.  There were maybe a dozen techs standing by to take patients to rooms for blood work.  We were paired up with one one young lady who walked us to her station.  There, her iPhone was playing a Kirk Franklin song quietly in the background.  Courtney explained her reaction to needles and asked if she could lay down to have the blood drawn, so she took us to another room.

They let her sit in a reclining chair that laid almost all the way back.  The tech then went to work.  We both warned her that Courtney is a “hard stick”.  She smiled, and if that girl didn’t hit that vein the very first try, within seconds!  Praise the Lord!

After the blood was drawn, she stopped and said “I believe God works in little ways”.  She told us how terrified she is of needles, and how she too has had issues with having work done.  But here she is, doing the job she does!  It may seem small, but that experience in the lab today was a Godsend to us. He puts just the right people in our path, for just the right time.

Please pray for the MRI tonight.  Specifically as she gets the IV.  We do not want another repeat of last Friday at the PET Scan.

Over the next few days, please pray for:

  • Peace & Patience – as we learn to live with uncertainty.
  • Wisdom & Clarity – as the doctors and pathologists here at MDA do what they do best.  To nail down exactly what this is, where it is, and what to do about it.
  • Healing – We continue to pray for total and complete healing.

Thank you again for staying with us on this journey.

We love you!

Adam & Courtney

19 thoughts on “Houston – Day 1

  1. Adam, thank you for allowing me to be a part of your journey. I only know you and Courtney through Courtney’s parents. I literally grew up with Courtney’s mom, Sharon, and feel blessed to have reconnected with her through Facebook. You have a gift of being able to share you feelings, and I’m confident God will continue to bless you and Courtney, and that He will use this situation to His glory. Praying for God’s blessings and peace for you both!

  2. Praying for total and complete healing everyday for you, Courtney
    Praying for peace, wisdom and strength for you and all your precious family!
    Love you guys!
    Beth Burch

  3. Adam and Courtney,, I love y’all so much, I am crying right now!!! praying for y’all!!! I love my cousin !!!! ❤️🙏❤️

  4. Adam and Courtney, I am friends with Sharon and Jimmy. They were my teacher at Evangel. I too have been down this long road and believe me I know what y’all at
    Re going through the feelings and questions you have. Yes you guys are in the right p,ace and just keep remembering God is in control you got this Courtney just make sure you always keep a positive attitude and never give up. Praying all times of the day and night for you both.
    Jeanie Shumock

  5. Courtney, if though I don’t know me you are in my thoughts and prayers. Your grandparents used to pick me up at my dorm when I was at the university and take me to church. You come from a wonderful family. We don’t know why bad things happen to good people, but it all in God’s plan to get glory. Hold on my child, joy comes in the morning. Love and prayers.

  6. Courtney, you and your husband , as well as your family members are uppermost in my thoughts and prayers . You will continually be there as our Mighty God helps the medical staff attending you to get to the root of your medical needs and get busy making you well . I’m Joy Beard Ivey’s mother and she and her family prays for you all too .

  7. Thank you for the updates, I am calling Courtney and the entire family’s names in prayer every day . I am praying for healing and that the Lord continues to put the right people in your path each day. Prayers that you have peace in the decisions that are being made by your physicians .

  8. Courtney, I have been and will continue to pray for peace, wisdom, strength and total and complete healing for you!
    Adam! Thank you so much for the detailed day you two had. It’s hard when we are to far away. I just love the way God loves us. He gave y’all that precious nurse 😥 HE’S GOT THIS AND I’M EXPECTING A GOOD REPORT 🙌🏻
    I love all of you so much!!!
    Kelly ❤️

  9. Adam, we are praying for you and Courtney as well as your little ones. If there is ANYTHING you guys need us to do while you’re out of town, please don’t hesitate to contact me.

  10. Adam, thank you for the detailed updates. Thankful you are using this medium to keep everyone updated. These updates are helping so many of us to pray extremely, specific prayers.
    Wylie and I are standing in the gap…asking our Father to pour out His peace & love, to you & Courtney, now & in the coming days. Much love to you both.

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