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.

Kristen

"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

   

Houston, we have a problem...

And you're going to fix it.

I know it's been a long time since I've blogged, and I do apologize, but things have just been VERY hectic around here.  So with that, I'll try to give you the reader's digest version of the past five or so months.

After several failed attempts at Chemotherapy, Rory's cancer has grown back with a vengeance causing several complications with Rory's kidneys and small intestines.  With our doctors at U of M running out of options, we decided to seek treatment elsewhere that has more specialized knowledge and treatment options for patients with DSRCT.

So here we are, April 11th 2011 (exactly 2 months before our wedding), and we are flying down to MD Anderson in HOUSTON for a consultation tomorrow (April 12th) with a team of doctors who hopefully will have some treatment options for Rory.  Our number one hope is that the doctors will want to perform surgery on Rory.  At MD Anderson they perform a de-bulking surgery (same as what Rory had done at Sloan),  but after the surgeon removes all the tumors, they run a hot chemotherapy through the abdomen in hopes of killing any microscopic tumor cells.  This procedure is known as HIPEC and if you'd like to know more about it, feel free to google away.

Continue to keep Rory in your prayers.  We need some answers and we need some treatment as soon as possible.  

~Kristen

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. ~ Jeremiah 29:11

P.S. I will do better at keeping this updated :)