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 :)  

Thankful for YOU

It was one year ago, the day after Thanksgiving, that Rory decided (with a little encouragement from his sister-in-law) that the pain in his abdomen was intense enough that it was probably time to head to the ER.  And while we were all optimistic that it was something easily treated, we never imagined the heavy dose of information we were about receive that night.  With a year of fighting behind us, I decided to reflect on that very night.  

Earlier that week, as Rory continued to complain about his pain that seemed to come and go, he finally decided to head to an Urgent Care center.  He was examined by the doctor who believed his problems were stemming from an enlarged prostate and so a CT scan was scheduled for the following week.  We kind of joked about it and went about our Thanksgiving celebrations we had planned for the week.  The morning of Thanksgiving, Rory and I ran the Detroit Turkey Troy (a 10k - for those of you that don't know that equals 6.2 miles).  Rory ran the whole thing and said he even felt great.  Little did we know at the time, that he was carrying around a nerf football sized tumor in his abdomen.  Talk about being strong!  That evening we enjoyed a Thanksgiving meal with both his parents and mine and the following day we headed to his brother's house where we were going to spend the rest of the weekend with his family who came in town from Illinois.  That Friday afternoon we arrived at his brother's house and Rory's pain just seemed to intensify as the day went on.  With a little encouragement from Rachel (Rory's sister-in-law who is a nurse), we decided to eat dinner and then head to the ER where she worked.  We decided that we wanted to get the treatment going for whatever was causing the pain asap and not wait for the scheduled CT next week.  When we got to the ER, Rory was immediately given some pain meds and finally was getting some relief.  I knew he was feeling "good" when he told me to "take a picture so everyone can see what we're doing tonight."

The night Rory checked into the ER

I remember sitting in the ER room waiting for the CT scan results when the doctor came back and told us that he needed to do further testing and that what they were seeing on the CT scan was "not good," but that they didn't want to say anymore than that before more tests were conducted.  And with those words, my gut dropped and Rory was wheeled back for more tests.  With the second round of tests came the spot-on diagnosis that whatever Rory had was an extremely rare tumor and we were advised to seek out a transfer to U of M.  The ER doctor could neither confirm nor deny whether it was cancerous or not without a biopsy, but believed from the looks of things on the scan that it was indeed cancerous.  The rest of the night was the longest night of my life.  In fact, I didn't sleep for over 48 hours and the next few days all we did was hurry up and wait for a room at U of M to open so Rory could get transfered.  While much of the night was a blur, the one thing that stuck out in my head was the immediate reaction I had.  I never got angry at God, I never asked God why, but I remember just saying to God, ok, I've never been in a situation like this before, and I'm not sure how to quite handle it, and so if ever, I NEED YOU NOW!  And with that, He took over.    

Finally on Monday, Rory was transfered to U of M and a biopsy would be preformed on Rory's tumor to figure out whether or not the tumor was cancerous or not.  To make a long story short, by the end of the week, Rory was diagnosed with DSRCT.  But remember how I had already given it over to God in the ER?  Before Rory was even diagnosed, He was already in the works.  When Rory got transfered to U of M, the doctor who happened to be on-call when we were transfered, was a doctor at U of M who specializes in sarcomas and who has treated DSRCT patients in the past.  God put us right where we needed to be to get the proper diagnosis because many times DSRCT is misdiagnosed as lymphoma by doctors who have never had experience with it before.

This year, as we approached the one-year anniversary of Rory's diagnosis, emotions overwhelmed me.   And yet I now understand that it was God's perfect timing, that Rory's diagnosis was the same week where we we celebrate a holiday known as Thanksgiving.  This year, more than ever, I am thankful for the things that really matter: my faith in God, Rory, my family, Rory's family, and our friends.  I am thankful for all the support and prayers that all of you have been giving to Rory and I in this year long battle.  We would be no where without it.  It is your love, and your prayers, and your words of encouragement that keep us going.

Katie, Rory, and Karen

This year Rory and I were able to enjoy a much more calm and relaxing Thanksgiving weekend and for that we have God to thank.  He is the one who continues to give Rory the strength to fight.  For those of you who know Rory, you know he is not a cancer patient.  He is still a 27 year old handsome young man, who continues to live life to the fullest and seems to have more energy than I do most days!

I can't express how blessed I am to have Rory in my life.  He has made me a better person and he has made my faith in God stronger.  When Rory was diagnosed we had only been dating 10 months and while many may believe it would have been easier to walk away, that thought never crossed my mind.  After weeks of dating, Rory was already the love of my life and I was already in it for "in sickness and in health."  Rory, If you ever read this blog, which I know you do sometimes, I love you so much more than you will ever understand.  There is no doubt in my mind that God made us for each other and I am so blessed to have finally found you!

Happy Thanksgiving!

A personal prayer that I have never shared with anyone involved Rory and I's engagement.  While I trusted God with everything going on in our lives, after Rory's diagnosis I continually prayed to God that I DID NOT want a ring on my finger unless it was a promise from God that He was going to watch over the two of us.  When Rory surprised me with the ring, it was so much more than a proposal.  It was a promise from God telling me that He was watching over Rory and I and that we were in the palm of His hands.  Now every time I look at my ring, it not only reminds me of Rory's love for me, but of God's love for us.

HAPPY THANKSGIVING EVERYONE.  I am thankful for all of YOU!

Kristen    

~“Give thanks to the LORD, for he is good; his love endures forever.”   Psalm 107:1
  

  

Has it really been a month?

 Wow, life sure does fly by and Rory and I have been keeping rather busy.  Since my last post, Rory has gone through two more rounds of chemo, a stent replacement, a CT-Scan, and a PET scan.  Rory's second round of treatment was much like the first.  He had very little side effects and pretty much pushed right through it.  Following his second round of chemo (Irinotecan and Vincristine) Rory got his kidney stents replaced and a CT-scan done.  Here's the good news.  Rory's CT scan was the first time we have ever received a good report from the doctor.  Our doctor told us that there are no new spots (YES), that several of the sports have shrunk (YES and YES) and that a few other spots stayed the same or grew very slightly (OK, i'll take it).  According to the doctor, the slight growth could be due to the necrosis in the tumors rather than actual tumor cells growing (in laymen's terms - that's a good thing).  So all around a very much needed good report that has been (in my opinion) long over due!  For the very first time, I left the doctors office feeling like I could breath.

For Rory's third round our doctor added Temodar to the Irinotecan and Vincristine cocktail.  Our doctor informed us that this could really make Rory nauseous and could have a greater effect on his counts.  Well Rory finished this third round last Friday (11/5) and he has yet to get nauseous from this chemo and as I type this he is at the office hard at work.  This past weekend we were able to enjoy a busy Saturday with the Spartan football game, a steak dinner at a local camp, and a get together at my brothers house.  It was a full day and Rory was the last one standing, while I was the one who petered out early!  Also, Rory has finally gotten his appetite back and as you can see from the pictures has been gaining his weight back!  After surgery he was at 126lbs and at our last chemo visit he weighed in at 151lbs!  WOOHOO!  He's been working hard at it, eating non-stop and lifting weights.  So far, so good!  I pray it stays that way.          

One of Rory's biggest requests has been to get his ileostomy bag reversed.  After his surgery in NY we were told by the surgeon there that he could have it reversed sometime in October.  After the positive CT scan results, Rory contacted Dr. LaQuaglia's team last week to see about the possibility of a reversal.  Angela, the NP, got back to Rory, requesting a PET scan be done so that Dr. LaQuaglia could get a better look at what was going on in his abdomen.  Once Dr. LaQuaglia has a chance to look at the PET scan he will determine whether he can have the reversal at this time or not.  In addition to the reversal, while he is in there, Dr. L said he would remove any spots remaining that he can see.  WOW!  We weren't expecting that.  I have prayed continuously that God removes the present sports in Rory's abdomen and that he removes any of the sports we cannot see.  Talk about answering prayer.  Rory's CT scan showed no new sports (prayer answer #1) and Dr. LaQuaglia wants to remove the current sports that are remaining (answer #2).  Rory had his PET scan done just yesterday (11/8) and the results will be shipped of to NY asap.  Please pray that the results show the cancer is continuing to shrink and that Dr. LaQuaglia will be able to reverse the ileostomy and remove any remaining spots that he can see.  I will be sure to keep you all updated on whether or not a return visit to NYC is in our near future!


In other news, our wedding is fast approaching.  Seven months and counting!  I am getting extremely excited and all the details seem to be coming together (including Rory's recovery).

Thanks for all your constant love, support, and prayers.  They keep us going.

~Kristen

1 Thessalonians 5:16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Winner Round One - RORY

Rory and I at breakfast in Disney

Today Rory and I once again traveled to Ann Arbor to meet with Dr. Schuetze.  The meeting was pretty uneventful with nothing too exciting to report on.  Rory had some blood work done and Dr. Schuetze examined Rory and that about sums the visit up.

Next week Rory will start round two of this chemo treatment and we say BRING IT ON!  Rory,  THANKFULLY, tolerated round one with very limited side effects!  A few days of diarrhea, but no nausea and his counts never plummeted.  He continued to work, go to the gym, and golf.  We were even able to enjoy a short trip to Disney World where we ate ourselves silly and got to ride all of Rory's favorites.  It was a great vacation and one we both desperately needed.

As Rory enters round 2, continue to pray that he tolerates the chemo well and that it works to kill any cancer cells remaining.  Rory's doctors are going to lower his Irinotecan chemotherapy dose by just a smidge in hopes of controlling the diarrhea a little better.  Hopefully that'll do the trick.  We also need prayers that Rory's counts will come up a little bit so that he can receive chemo on Monday.  While his counts never totally bottomed out, they did go down a bit and the blood work from today needs to come up by Monday so that he can start his chemo.  After this round of chemo, Rory will have another CT scan done and we need to hear some good news.  Pray that the scans show signs of healing and NED.

Enjoy the pictures from below.  They are from our Disney trip this past weekend.

Kristen

"pray without ceasing" - 1 Thessalonians 5:17

The Family in Disney :) 

  

Rory and I at "our spot" where Rory proposed to me 6 months ago

Rory and I before the 1/2 Marathon

NED - NOT YET!

Well I know it's been a long time since I've updated (over a month) and I'm sorry to those of you who have been wondering what's been going on (if anyone still even check this).  We've been living life and doing a pretty good job at it.  We've been enjoying weddings, lakes, football games, beautiful weather, golf and just being around all our friends and family.  Life has been pretty good :)    

That was until this past Thursday when we had our follow-up doctors appointment at U of M and learned the results of Rory's CT scan.  After everything Rory has been through these past couple months (surgery and the 8H9 trial) his scan showed us just how stubborn and relentless this cancer is.  He has two new spots of concern with one being the size of a golf ball near his lower left pelvic area and small spots near his liver.  UGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So here we are in chemo mode again!  Rory just got done with his first day of Round 1 of chemo.  He will be on Irinotecan and vincristine for this first round and with the next round we will probably add Temador or replace the vincristine with the Temador.  Don't know the plane yet.  Rory will be doing this treatment for about 4 or 5 rounds (1 round = 1 week of chemo/ 2 weeks off).  Our doctor has also been in contact with the National Cancer Institute (NCI) for a Allogeneic Stem Cell Minitransplant.  While I don't know the details about all this I know that the hopes of doing this is to replace Rory's immune system with a new one (from a donor) that will attack the cells that keep making this horrible cancer.  They will first test Rory's brother and sister to see if they are a match and if not he will be put on a donor list to find a match.  If his brother or sister are not a match, finding one can be a pretty lengthy procedure and I would ask that any of you reading this would prayerfully consider getting on that donor list.  So that's our plan for right now.  Our doctors (both here and in NY) are hoping that the chemo will get rid of these pesky tumors present and as of right now another operation is not in the talks.  

While Thursday was a rough day for both Rory and I we have entered into this week 1 of chemo with our heads held high and boxes gloves on.  We again are ready to FIGHT.  So while no evidence of disease is still something we long for to hear from our doctors mouths, we're focused on beating this thing  no matter what it takes.

Continue to keep Rory in your prayers.  Pray that this chemo kills the cancer for good.  Also pray that Rory tolerates this chemo well with no side effects.

Also, as you can see, this cancer is nothing to joke about and more research needs to be done to find a cure for it.  Gift To Cure is an organization whose purpose is to raise money to fund research and to help families financially who are battling DSRCT.  Go to their website http://www.gifttocure.org/ Learn a little bit more about the cancer and what the organization is all about.  There is a lot of good information on their website.  Currently this month they are running a $10 campaign.  The goal is to raise $50,000 but so far only $2000 has been raise!  Please, Please, Please consider giving to this charity!

Kristen

The song "Fight Another Day" by Addison Road is a perfect way to describe what Rory and I are going through right now.  Download it and listen to it.  Here are some lyrics.....

"Have a little faith when the walls cave in,
Pray for strength to fly against the wind.
Will you walk away when the fire gets hot,
Or fight another day?  


Even when your heart's been broken,
He'll be there with arms wide open.
Be strong and his love will lead you to fight another day"


we are fighting ANOTHER DAY!