Hi everybody! I created this blog so that you all could cheer Rory on throughout his battle with DSRCT. I know all of you care so much about Rory and want to be updated on everything going on and so I thought a blog would be the best way to do it! Thank you for all your love and support.


"Trust in the Lord with all your heart and lean not on your own understanding" - Proverbs 3:5

Prayers for Rory Wheeler from India

Wednesday, April 13, 2011

Hello from Houston

Yesterday (April 12th) proved to be anti-climatic or better yet, almost too simple of a day for what was our initial consultation with Dr. Ludwig and his team at MD Anderson about Rory's treatment plan.  I am trying really hard to not read into anything that was said or over analyze the simplicity of yesterdays doctor visit, but instead remain confident that an "outside the box" treatment is exactly what Rory needs.  

Let me first start off by saying how impressed I am with MD Anderson.  They seem to really have their stuff together and are good at being professional, yet caring.  We have never had an oncologist or doctor explain to us the reason why a treatment was chosen, and that is exactly what Dr. Ludwig did.  He broke it down into chemicals, proteins, and molecules as to why this new treatment option may work for Rory and while we all just nodded our heads as if we understood, it was nice to know he had a reason for choosing this treatment rather than just scrolling through the different options and blindly picking one.

As you all know, all the "standard" chemotherapy's that are typically used to treat DSRCT have NEVER worked on Rory's tumors.  They have been chemo resistant from the start, never shrinking, and hardly ever not growing.  Like Rory, his tumors prove to be stubborn and have a mind of their own.  With that, Dr. Ludwig and his team evaluated the options of going back on a previously used chemotherapy or moving on to something that was outside of the box and hardly ever used to treat DSRCT, but may be just what Rory needs.  And with that, they chose to put Rory on Pazopanib which is a multi-tyrosine kinase inhibitor that interferes with cancer cell signaling and growth and is most commonly used in kidney cancer and has been recently approved for treating colon cancer.  Like I said, Dr. Ludwig explained to us why this treatment option, not commonly used for DSRCT, could work based on similar proteins found in colon cancer cells and DSRCT, but it's all over my head.

While this treatment is in uncharted territories, here is where I find my peace.  After Dr. Ludwig explained to us this treatment option, he hit us with a big BUT!  He explained to us, that because this is not a standard treatment for DSRCT (as if there is one), there would be about a 30% chance Rory's insurance would cover the drug and that it could take a few days to hear back from the insurance company.  Great!  So the doctors number one treatment option for Rory right now is going to come down to insurance coverage.  After telling us this, he said, "I'm going to go get you the information on the drug so you can read up on it and i'll be right back."  I kid you not, in about three minutes, Dr. Ludwig's nurse, Angie, came into the room, looked at us and said, "your prescription for Pazopanib is up at the Pharmacy."  I looked at her in confusion and said, "but we are waiting to hear from our insurance."  Remember how I told you they have their stuff together?  Well so does God!  While Dr. Ludwig was in talking to us, his team was already calling Rory's insurance company for approval and guess what?  They approved the treatment, just like that!  While we know nothing about the validity of this treatment option working on Rory's tumors, there wasn't a dry eye in the room.  I choose to believe this was God's work making a treatment option readily available to us when there seemed to be none left.

This treatment requires Rory to take a pill every day for the next month (he starts taking it Friday) and side effects should be pretty mild.  In a month, we will return to MD Anderson to meet with Dr. Ludwig, rescan, and re-stage Rory's cancer.  If you want specifics of what to pray for, pray that this drug works on Rory's tumors by shrinking and killing them.  In addition, please pray for no side effects and that Rory is able to gain some strength and weight back.  

It is no doubt that Rory and I are in a major trial of our lives.  It is my prayer that we "will come forth as gold" ~ Job 23:10  

Keep the prayers coming; God hears each and every one of them.


"Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him."  ~ James 1:12



  1. I am so happy for you guys! You deserve the best treatment and care! Kirsten, thank you for posting info on the drug, I am sure a lot of other DSRCT families will be following Rory's progress as he navigates through this new treatment! You guys are in my prayers!
    If see the Steele and Blevins family, please give them hugs for us! It is wonderful that you guys get to meet and support each other!!! I envy that.

    Keep on Keepin' on.
    Loiss, William's Mommy

  2. Sometimes simple is exactly the solution that works! As someone that tends to forget this - I find the Lord gently (or not so gently) reminds me , usually after I've exhausted myself in over analyzing and doubting and freaking out.

    You two will win this fight!!

  3. Kristen and Rory,

    Thinking about you guys a ton and praying like crazy! I don't know you Rory, but I know Kristen and she is an amazing woman so I know you must be amazing too! I am praying that this treatment works and that the side affects will be minimal. Kristen, I am praying for your strength as you help Rory through this process!


  4. I will pray as you have asked: specifically and intentionally. I am also praying for strength for your families as they support you in this battle.

  5. Kristen,

    Thank you for sharing this! I (we) continue to pray for Rory and you everyday. What a blessing, the LORD provides what seems to be little (but they're huge) moments like the insurance; what an encouragement (and the cool thing is, is that He's given you guys the sensitivity to Him to know that it is in fact Him who orchestrates such things -- He is ever present!). Rory, brother, you're going to make it through this, my man! Praying for you both; and praying the LORD will just work through this new treatment (He apparently wants Rory to have it, insurance companies never work that fast on their own ;-), with NO side effects!

    Blessings in Jesus,

    Bobby Grow

    PS. If you could remember me in prayer too, I'm going in for my 3rd post-treatment CT scan (I always get anxious a few days before -- it's on the 4.26).

  6. I stumbled across your blog today! My husband was diagnosed with DSRCT 6 months ago. He is also being treated at MDA. Check out my husbands testimony he gave at a mens retreat about his struggle with DSRCT. Www.vimeo.com/brelandbooth/bradbooth
    here is our caringbridge site: www.caringbridge.org/visit/bradbooth
    sorry to overwhelm you with all of our info! I just get excited about having other couples on this journey with us!
    stacey & brad booth

  7. HI, just wondering how Rory is doing and what is next as far as his treatment plan???


    Angela Grow

    ps still praying...

  8. This comment has been removed by a blog administrator.

  9. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?