Days Go By

Lately, every time I sit down to update everyone on Rory's progress, I find myself feeling overwhelmed with the daunting task of reliving events that will haunt me for life.  I've decided that blogs are much more fun to update when I get to report good news.  But with more and more people inquiring about Rory, I figured I better buckle in to my "sleeper chair" here at the hospital and give you my Reader's Digest version of the past three months.  (WOW THREE MONTHS - I really am horrible at this).

I believe I left all of you blog readers hanging with our initial visit to MDA when Rory was put on Votrient.  So I will pick up with our return visit in May.

When we returned to Dr. Ludwig at MDA the PET scan showed that 20% of the tumors were responding to the Votrient and 80% remained stable.  HOORAY!  We have never had the news that Rory's tumors were responded to a treatment so we were definitely on cloud 9 and we were told we didn't have to return until July.  Now I know I said earlier that blogs are much more fun to write when there is good news to write, but this good news was VERY shortly lived.  The morning after we got the goods news was quite frankly one of the scariest moments of my life.  I had awoken early to give Rory his meds as I normally do.  Rory took them and then laid back down to get some more rest.  As I nestled in to my bed I began to notice Rory's heavy and labored breathing.  I jumped out of bed, ran over to him and found him gasping for breath and unresponsive.  Natural instinct jumped in and I sat Rory up in bed and 911 was called.  As I sat Rory up, it must have opened an airway because he began breathing normal again and became responsive but his eyes were wide open and my heart rate must have been through the roof.  After several tests, scans, and doctors it was determined that Rory had a pulmonary embolism.  At first doctors were concerned that it was due to the Votrient, but it was later determined it was not and that the Votrient was still safe to take.  Thank goodness.  With that giant scare, we spent a few days in the hospital and Rory was put on blood thinners and we booked our flights home.

Upon our arrival home, things seemed to be returning to normal until Rory started urinating blood.  We were instructed by our doctor to head to the ER and to stop taking the blood thinners.  During this hospital stay a slew of things happened.  First thing first was that Interventional Radiology placed a filter to prevent any further blood clots from traveling from his legs to his lungs (pulmonary embolism).  Next, it was determined that Rory's kidneys were once again shutting down and that the neophrostomy tubes would have to be replaced (not sure if I ever mentioned that they got taken out at one point).  So the tubes were put back in and things seemed to be going well until later that night when Rory's heart rate reached 140 BPM with a rising temperature and and "deer in head lights" Rory.  We were rushed to ICU where they began pumping him with fluids and placed on antibiotics.  They determined that he was dehydrated and that he has sepsis.  Slowly they were getting Rory's heart rate under control and Rory was feeling much better.  However, this lengthy hospital stay left Rory extremely weak to the point where he was having difficulty standing and or walking.

Thankfully, Rory was released from the hospital the Tuesday before the best day of our lives, our wedding!  Despite the hard month Rory and I had, the wedding was just what the doctor ordered as we were surrounded by all of our families and friends who have continually supported us throughout this battle.  A day that could have been easily filled with a somber atmosphere was instead filled with love and laughter.  While people frequently told us that they considered it a "privilege" and an "honor" to be apart of our day, it was Rory and I who were left humbled and uplifted by everyone who made it out to celebrate with us.  Rory and I are pretty confined to the house these days, but the wedding provided us with a "night out on the town" that we will never forget.

A snippet from our wedding day we would like to share with all of you! (Click on It)

That pretty much brings us to present day.  Rory and I have been married for a month now and I am proud to be Mrs. Rory Wheeler.  I couldn't have asked God for a better partner in crime to this crazy roller coaster of a life we live.  Rory's strength is a constant battle, but we are working with physical therapy and are remaining positive that with time he will regain some muscle in his legs and arms.

Just this past Tuesday (July 12) Rory was admitted to the hospital for a high WBC and is being treated for an infection.  Eating is a daily battle for Rory as his stomach is bloated and full of gas from lack of movement and he cannot eat more than two bites before getting full.  I know all of you continue to keep Rory in your daily prayers, but I would request that you pray much for frequently for him and pray specifically that his body releases the trapped gas (yes, it's ok to pray for Rory to fart... I do it allllll the time) so that he can eat more and that his strength returns.

Our entrance to the reception

Kristen

^"30 Even youths grow tired and weary,
   and young men stumble and fall;
³¹ but those who hope in the LORD
   will renew their strength.
They will soar on wings like eagles;
   they will run and not grow weary,
   they will walk and not be faint."

~Isaiah 40: 30-31

Some more pictures from our wedding for you to enjoy!

Father and Daughter Dance

A little Disney magic added to the wedding ceremony!

Our lovely wedding party

Mr. and Mrs. Rory Wheeler

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 :)