Almost out of the woods...

Tonight will mark the 72-hour period of when Ryan got his first dose of chemo. All of our doctors told us to expect the worst between 48-72 hours. So far, so good. Ryan is definitely still VERY tired today, but maybe backing off on the one anti-nausea med that they gave us to help him sleep will make it so that he isn't sleeping constantly... haha. Kendra Prudhomme, RN, I am not.

Things Kendra is good at:

• Learning useless information on Wikipedia
• Finding information instantly on Google
• Speaking Spanish
• Getting cars stuck in snow or mud
• Doing dishes by hand

Things Kendra is not good at:

• Cleaning (reference my post from 4/28)
• Packing for a trip (reference my post from 4/20)
• Laundry
• Being a nurse
• Loading the dishwasher

Sooo tired...

Well, the effects of the chemo finally hit today, although we still couldn't be more happy with how kindly it is treating Ryan. He is currently in bed again, after taking a three and a half hour nap this afternoon, but of course he plans on getting up to watch the Red Wings tonight at 10:00. Fatigue, restless legs, and hiccups have been the most prominent side effects so far, but no nausea. Praise the Lord!

We are HOME!

Ahh, what a good place to be! Our humble little house has never looked so good...literally. My awesome in-laws had someone come clean our house top to bottom and it hasn't looked so good since the day we moved in. I'm talented in a lot of areas, but deep cleaning is not one of them. :)

Ryan is doing really well. He's tired and has been hiccuping most of the day, which I learned from a quick Google search is a very typical side effect of one of his chemo drugs, and also anti-nausea meds. He's super tired right now at 7 p.m. and he keeps falling asleep, but the nausea hasn't set in...yet. We'll wait and see what tonight and tomorrow bring.

Colton has been in a fabulous mood ever since we got home. "MY TOYS! MY BED! MY TUPPERWARE DRAWER! MY DAD'S DRESSER, WHERE I CAN PULL ALL OF HIS CLOTHES OUT!" Thanks for praying for this little guy, he had a very good ride home and there really wasn't much protesting, and even two naps!

It is looking like a reality that we will be able to be home for about three weeks, and maybe even go back to work for some of that time (YAY! I miss my students and coworkers so much). Ryan has dr. appointments and chemotherapy treatment next week again, but the following week (May 9-13), I think we might be able to work a pretty full week since he has no treatment! Colton will be so excited to play with his daycare buddies and see Miss Rene and Miss April. And I know that Grace Adventures will be glad to get their marketing director back whenever they can. Ryan and I (and Steve & Cathey too, for that matter) are so blessed to have jobs where we do. Our employers have both been so incredibly supportive of us up and leaving for three weeks and delegating responsibilities. It has been such a relief to know that we are able to concentrate on Ryan's well-being at this time and make that our top priority.

Thought for the day:

Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” WHY, YOU DO NOT EVEN KNOW WHAT WILL HAPPEN TOMORROW. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.” James 4:13-15

If something in your life were to happen and everything changed in one day, or even in the blink of an eye - is your life focused where it should be? Are you serving and cherishing the people around you? Are you focused on what's important? Who knows what tomorrow will bring. Tomorrow will be four weeks since we got the phone call from University of Chicago that flipped our world upside down, and we were not expecting that sort of news in the least. I picked up the phone when Ryan called me as I was pulling in our driveway, and I immediately started chattering at him about something that I thought was terribly significant at that moment - how I was frustrated with somebody. Then in the space of about 20 seconds, that frustration was totally unimportant. Since that day, Ryan and I have taken a hard look at where we spend our energy. We decided to stop arguing about things that don't matter, and to focus more on serving the other person than serving ourselves (which we should have been doing the last five years of marriage, I know). An extensive addition to our house this fall, which was a huge priority of mine, seems much less important (plus also totally unrealistic). I have made a conscious decision to stop putting energy into situations or relationships that don't need or deserve my attention, and to start investing more in things that matter - the people that care about me, especially my son, my husband, and my Lord and Savior. Church. Ministry. Impacting people for Christ. Ya know, these are really the only things that matter.

This is what high definition means - seeing the important aspects of life clearly. Are you living in high definition or are you still stuck in standard definition?

Quick chemotherapy update

Ryan is still receiving his chemotherapy drugs right now. He's already had one drug, now he is working on the second one. So far he feels nothing. He's been pumped full of fluids and anti-nausea meds, and we're going to keep him full of those same things once we get back to the hotel tonight.

We are hoping to leave tomorrow morning for home, provided that Ryan is doing okay. Our oncologist suggested that we try to "outrun" the nausea, which will likely hit worst about 24 hours after Ryan receives the treatment.

A week from today, Ryan will receive one of the two drugs again - thankfully it will be the kinder, gentler drug of the two. We're not sure yet if we will be getting this near home or in Zion again. We are going to try to get in with a local oncologist, but the timeframe is kind of tight. It may not happen, but it really doesn't matter to us where he gets treatment. Then the third week, he will not receive any chemotherapy. Then the whole cycle repeats itself.

We are feeling your prayers, loved ones, friends, acquaintances, strangers. We can feel your support in a palpable way. The Lord is definitely sustaining us - He is good all the time.

Psalm 121:

1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the LORD,
the Maker of heaven and earth.

3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.

5 The LORD watches over you—
the LORD is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.

7 The LORD will keep you from all harm—
he will watch over your life;
8 the LORD will watch over your coming and going
both now and forevermore.

Those who trust in the Lord...

For the last five years I knew it was a possibility I could get cancer. It was so unlikely though. I thought maybe I'd have to have a liver transplant in about 20 years, but I think in my mind I was planning on God protecting my body from ever having serious complications.

When we heard about the cancer it was so scary. There were so many unknowns. Then around every corner there seemed to be two options, one devastating and one hopeful. Is it cancer or not? Is it this kind of cancer or that kind? Is there this treatment option or not? Every time the answers came back different than what we prayed for. As we went to Mayo hoping and expecting to get options for treatment, we were devastated when they did not give us much hope medically.

When we arrived at CTCA I told people I'm pessimistically hopeful for more options. Why would they have a different answer than Mayo? Yet when we spoke with them, it was as if we were given new life when the doctor said that there were still options and reason for hope medically.

So there I was. Throughout this entire process I have prayed that God would heal me medically or miraculously. However our hope ebbed and flowed as we got different medical news. After a bomb from a doctor, Kendra and I would feel like we were gut punched; hope was escaping us. Then as we fixed our eyes on Christ that hope would come back... until we spoke to another doctor or got a test result back.

All along I've said I don't put my hope in medicine, but I don't deny that God might use it. This whole experience is a process. Hope and faith and grace are a process. That's why were called to work out our faith with fear and trembling, Phil 2:12. I almost felt guilty as I was relieved and hopeful for my healing after speaking to the doctors here at CTCA. Why did medical options raise my spirits? I had had found peace again after the news from Mayo, but I'll admit I thought the only way I was going to be healed was solely in God doing a miracle. When I got news that medically I may have options I felt like a new man. I wondered if I was putting my hope in chariots and horses of modern medicine instead of the name of the Lord as in Psalm 20:7.

Is it wrong to find hope and encouragement in medicine and in man during this time? If so, why have we been praying that God would open options for us both medically or miraculously? You see this is an answer to prayer, to have options. And yet, my hope is still in Jesus Christ. My greatest sense of peace is that I know God is able to save me. Whether He chooses to or not, my hope is not dependent on a cure, but on His promise.

So as I reflect on the last three weeks, it wasn't my hope that ebbed and flowed, but my faith. Do I trust that God is in control no matter the circumstance? Today I do. I have cried out as the father in Mark 9:24 cries, "Lord help my unbelief" so many times in the last three weeks. He is there to answer when I call. I would say my faith is greater than it has ever been, and yet I've also felt like Peter and Thomas at moments denying and doubting.

So where is Hope born out of? Faith. Where is faith born out of? Trust. Which leads me back to one of my favorite passages.

5 Trust in the LORD with all your heart
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight.

7 Do not be wise in your own eyes;
fear the LORD and shun evil.
8 This will bring health to your body
and nourishment to your bones.

Quiet before the storm

Well I don't remember much about today. I was under anesthetic for a good portion of it. Two different procedures, but both went well. I am feeling the effects of having my port put in. This is an implant below my left collar bone. It is about the size a milk cap, maybe a little thicker. It will be there indefinitely and will be where the Chemo is administered.

The doctor said it did not appear to be any cancer in the colon. This was to be expected. He took a couple biopsies just to confirm and we should get those results tomorrow. However we are all moving forward finally that it is for sure cholangiocarcinoma. Therefore I will begin chemo tomorrow. I'm taking two drugs this week. One will be very difficult. High degrees of nausea and vomiting and it is worst for younger patients, go figure. I would rather be in pain than nauseous. It is probably my least favorite feeling. Please pray that the effects are limited.

Otherwise I am in high spirits. I'm glad we are finally able to begin doing something. This feels like an action step and I'm glad about that. We will now shift our prayers to God using the chemo to eliminate the cancer.

Please pray for my family tomorrow. Kendra is a kind and compassionate person. The amount of empathy in her soul astounds me. I am jealous of it. However she will almost literally go through this with me as she feels so keenly when I'm in pain or discomfort. Also I cannot imagine having to watch my son go through this. It will be difficult for my mother to see it as well. We all know this is an answer to prayer, but it will be tough for them to watch.

My motto for tomorrow will be, "my Grace is sufficient for you".

Success

Port insertion and colonoscopy both were uneventful. Doctor doesn't think Ryan has colon cancer but we will get results tomorrow. Pray for quick recovery.

Songs for the Spirit

I've loved Christian music for many years, but wasn't something that I liked instantly after I became a Christian at 16. Chris Tomlin was the artist that introduced me to the genre when I was in college, and he's probably still my favorite, with Casting Crowns being a close second. But worship music has really been powerful for us the last couple of weeks (Ryan referenced that fact in his earlier post). At times it has brought us joy when we've been reminded through music of God's incredible, endless love for us. At times it's gutted us to sing about God's goodness when it feels like he's allowing really terrible things to happen to us.

Ryan and I have discovered and rediscovered some songs lately that have been uplifting to us. Hopefully they will speak to you in some way, wherever you're at in life!

First one: David Crowder Band, "How He Loves Us". This song has been a great reassurance. God loves us passionately. When the world feels like it's crashing down around us, it is so good to know that our Creator wants to have us run to him and that his grace is sufficient for our needs.



Secondly, Chris Tomlin: "Our God is Greater". Our God is mighty, powerful, and he is our Healer. If we are going to come through this, it will be because our Lord chose to heal Ryan.



This next song is the one that has been my own personal "anthem" for most of the last month: Aaron Shust, "My Savior My God".



The last one here is the most difficult one to post, because it's hard sometimes for me to say "Your will be done, Lord". I've had to learn to surrender my will and my husband and that is not easy when a person is headstrong and wants to control situations! Jeremy Camp, "It Is Well"



There are so many more that are on heavy rotation right now, but those would be the top ones.

Update from Cancer Treatment Centers

It is hard to believe that a few weeks ago we did not have any words like chemotherapy, cholangiocarcinoma, or oncologist in our everyday vocabulary. Nevertheless, this is the reality of where we are at and we are learning more every day.

We met with my medical oncology team and other people today. They conveyed the same feeling of positivity and encouragement that we felt initially last week. All signs point to poorly differentiated adenocarcinoma consistent with cholangiocarcinoma. What this means is that the cells of the carcinoma are still cholangio, however they look very different from regular cholangiocarcinoma. This has made it very very difficult to diagnose the cancer. It also could be why things have progressed so quickly even though this is normally a very slow-moving cancer.

I also have ulcerative colitis which which carries a risk of colorectal cancer. There is a completely remote chance that the cancer could be colon cancer that has metastisized to the liver. Colon cancer and cholangio cells look very similar. There is nothing to point us to this conclusion, no medical signs or symptoms. However if it were colon cancer, it would be A LOT BETTER for our prognosis. The treatment would be different and it would be less serious. We are not expecting it to come back colon cancer. The chances are almost impossible. However please pray diligently between now and tomorrow that it would be colon cancer. I will have a colonoscopy tomorrow to rule this in or out.

At this point we have a big day scheduled for tomorrow. I have a colonoscopy tomorrow morning, then a chemo port will be implanted tomorrow afternoon. Both of these are surgical procedures. The pathology from the colonoscopy should be back by Wednesday. If it comes back negative for colon cancer, we will move forward with treating it as cholangiocarcinoma. We will combine chemotherapy with diet, vitamins, minerals, and supplements to aid the chemo, and heal the liver. Chemo will start on Wednesday afternoon right now.

We are optimistic about the effectiveness of the chemotherapy drugs. In the words of the oncologist today, "these drugs are damn good drugs". Also fast-moving cancer responds better to chemo (confirmed, Brian, thank you). We will know in about six weeks if it is responding.

I have been thinking about this whole situation as I go about my days. Sometimes it is easy to watch a sports game or go through a mall and look at all the people going through the motions and feel so different from them. Then you start thinking, "why me God?. I've tried to keep your commandments my whole life. I work in ministry. My goals are noble. I'm a great guy who it seems like You have big plans for, why me?". I've really been convicted however to start thinking, "why not me?" You see I've not kept all the commandments just like the rich young ruler, there are things I've struggled with. I'm a sinner, and this is a fallen world. Sickness and disease are a part of this. However God also promises to not give us more than we can bear. I can bear this. Maybe other people aren't ready or could not bear this at this time. Sometimes I feel like telling God, "No Mas". However I know He is using this in so many powerful ways. As I said to a friend the other day. I wish everybody could go through this, with out having to go through it. The glory of God is so close I can taste it. The hymns and worship songs I sing are so literal and real. The words are no longer distant hyperbole that I can't relate to. It is well with my soul.

Commenting

I've had a few people ask how to comment on our blog. You can sign in with your Google, LiveJournal, Wordpress, AIM, or TypePad account. Or you can sign in with your name & URL (or leave URL blank). Or at the very least, just pick "Anonymous" but sign your name, please. :)

Happy Easter!

This weekend has been great so far! We have been jam packing it with activities, which helps tremendously in getting our minds off of cancer... that is such a good thing.

Yesterday we went to two malls, not just one. Once we shopped all of Gurnee Mills, we headed for the Wisconsin border and shopped at Pleasant Prairie, kind of like Birch Run but half the size. They are run by the same company, so PP was very similar. Quote of the day from Ryan: "I think you need to buy more shoes."  Uh, okay!  Done!

This morning we went to Gurnee Community Church and enjoyed great worship. I missed our home church this morning so much... felt very homesick. After church, we headed downtown to the Field Museum. We looked at the Horse and Ancient Egypt exhibits and finally Colton had ENOUGH. He never napped yesterday on our grand shopping excursion, so needless to say, he was done at three thirty today. He is sacked out in his car seat next to me as I type this on my phone. :)

Tomorrow we will resume the appointments. We anticipate that we will have the BIG meeting on Tuesday, and chemotherapy will probably be on Wednesday.  We won't be home until late this week.

Please start to pray for Ryan's body and his tolerance of the chemo. It will be difficult, no doubt. Please pray for lessened side effects, and please pray for the caretakers too. I am getting nervous - I DO NOT want to watch him go through this. But this is what we need to do.

I'm attaching some pictures of us on Easter Sunday, including one of the effects of two busy days on our son. Happy Easter everyone... He is risen, indeed!

Weekend time!

So looking forward to the weekend... we are going to have a lot of fun. Last night, we got to hang out with Amy. Today we are going to go to Gurnee Mills Mall, and tomorrow after Easter service (still to be determined where we will be celebrating Christ's resurrection) we are going to visit the Field Museum and see their exhibit called "Horse" (can you guess who wants to see that?).

Hope, it's a beautiful thing.

Today we had lots of appointments with nurses, oncologists, lab technicians, etc... it was a busy day. We met a lot of people who were incredibly nice - this place just amazes me with how helpful and positive everyone is, from the food preparation workers all the way to the doctors and nurses and front desk workers at the hotel. The patient is clearly the focus here at this institution... anyway, I digress. I'm sure that you're wondering why I titled this with the word "hope" in it. Let me tell you why!

The oncologist that we met with today, Dr. Mellihor (can't guarantee that is spelled correctly), was very upfront with us about what we're facing. He confirmed that yes, this case of cholangiocarcinoma IS inoperable. But, he encouraged us to not start planning a funeral yet. Every case is different, and he didn't want us to think that we were just going to be another statistic. He is planning to take a much more aggressive approach than our Mayo oncologist. The Mayo oncologist basically told us to do a conservative approach to chemotherapy (so as to extend life, not really to fight the cancer). The CTCA oncologist's exact words were "Let's go after this". I wanted to pump my fist in the air and shout out "Darn right, let's get after this right now!" It's so encouraging to have someone that is willing to give us a shot!

Dr. Mellihor said that if chemotherapy will shrink Ryan's tumors, then we might be able to do an operation in the future to remove any remaining cancer. Radiation might be useful at some point to "kick start" the shrinking of any stubborn tumors. Transplantation wasn't even discussed... that would be far in the future, I imagine.

So the next few days are going to be full of more tests and appointments... a more extensive CT scan, meetings with nutritionists, GI doctors, even a possible ... sigh ... colonoscopy (small chance there might be some intestinal involvement). We will meet with our team of doctors next week (probably Tuesday) and get the full picture and put together a treatment plan. Ryan will most likely even get his first round of chemotherapy Tuesday or Wednesday. This will likely knock him on his butt, to say the least. But he is definitely the toughest person I've ever met - I'm confident he will handle it well.

While this is a wonderful piece of news, we won't start saying "Phew, we're free and clear." We have a long road ahead of us, and odds are still against us. Chemotherapy has about a 30-40% success rate of shrinking tumors. But on the other hand, we continue to place our hope in the healing hand of our Lord, not in modern medicine. If it is God's will that Ryan is healed, then He will make that happen in one touch of his hand. One touch of the cloak heals us; chemotherapy is only a tool.

So here is an updated prayer list: please pray for a miracle, peace, grace, answers, open doors to share with people why we have so much hope, and for Ryan's body to respond to treatment. We continue to be appreciative of you thinking of us, praying for us, and all of the cards, gifts, spa treatments!, and kindness that have been poured out on us. We are so amazed and humbled. We love you guys.

Vanity of Vanities

You might be wondering where the title of our blog came from. A couple years ago I met a gentleman at a camp conference. He was diagnosed with stage four cancer and had battled for so much longer than he should have. Dale spent some time talking with me processing about what it is like to live with a major medical disease. His wisdom and grace was so encouraging. Later that conference Dale spoke to the entire conference and talked about his journey. About halfway through he said,

"Though we're walking through the valley of the shadow of death, & there's monkeys and dragons on the sides of that valley trying to distract us & rob us of our joy, as we abide in Him every day, every day is filled with joy. This moment right here is filled with peace, fellowship, & rejoicing-every day is lived in high-def."

The last couple weeks Kendra and I feel like we have been living life in high definition. The glory of God has never been clearer, His hand has never been more evident, and our marriage more sweet. We are riding a tidal wave of God's grace and the prayers of saints and friends.


I was reading Ecclesiastes this morning and it made more sense than ever. Solomon talks about how futile all his efforts were to satisfy his own soul. He tried wealth, building cities, women, everything and in the end nothing satisfied. It is all vanity to him. At the end of chapter 2 however Solomon comes around and explains living in High Definition.

Ecclesiastes 2:24-25  A person can do nothing better than to eat and drink and find satisfaction in their own toil. This too, I see, is from the hand of God, for without him, who can eat or find enjoyment?

This is vastly different from the old saying, "eat, drink, and be merry, for tomorrow we die". Solomon's goal is to enjoy every day for it is given by God who gives good gifts. How much time do we waste worrying about life's insignificant trials? The assignment at work, the jerk on the highway, getting laid off at work, not getting the raise you expected. We waste time and energy focusing on these things. Kendra and I feel like we have been stripped of everything insignificant. Our focus is on Christ, and then each other and our family. We are committed to taking advantage of every moment we have, such as to appreciate each other or share the truth with a stranger.


What are you wasting your time and energy on? Better yet, are you intimidated and awestruck by the Glory of God the Creator of heaven and earth? If you are everything else will pale in comparison to dwelling in His presence.

Welcome to CTCA

Hey guys, we're here! We arrived at CTCA at about 10:30 p.m. last night. The hotel that we're staying at is very nice, it's owned by the Center and very modern. So far the staff that we've encountered has been very helpful. We have only accomplished eating breakfast so far this morning, but Ryan's initial appointments start in a little over an hour.

I had a line pop in my head two days ago that I've been thinking over and over again the last couple of days that I wanted to share with you all - it's sort of an amalgamation of a few different phrases and song lyrics, I'm sure - "With the Lord before us and the body of Christ behind us - who can stand against us?" What comfort there is in knowing that we are surrounded by people who are helping carry us through this and diligently praying for our family. What comfort there is in knowing that the Lord is sovereign and has the smallest minutiae of this journey planned out, and that his will is perfect and good.

On the road again....

Here we go! On the road to Cancer Treatment Centers of America in Illinois. Colton has approximately ten billion toys with him, and I packed way more clothes than I needed to. The back end of this car is sagging under the weight of four adults' luggage and one baby's. (The baby's luggage far outweighs ours.) Ryan is not feeling the greatest today, so please pray for him. Just some aching pain in his back.... not sure if it is cancer related or if it is just muscle ache. We are hoping for the latter. This week we have been working a bit at our normal jobs and trying to send out medical records to major cancer centers across the nation for their opinions on Ryan's case. We are in contact with some top GI doctors and praying that someone, somewhere will want to give us more options. Well typing this on my phone so I am signing off for now.

Update 4/13/11

Hi guys, Ryan wrote this last night and I’m sending it out this morning.  I’m adding a mother’s postscript to it too: would you please pray for our son Colton?  He is having a very hard time adjusting to being in new places, seeing new faces, a different bed, a different routine…he had a rough day on Tuesday.  Please pray for him to quickly adjust and that we as parents can still meet his needs that don’t get pushed aside just because we are at Mayo Clinic. Also, his first birthday is on Thursday the 14th, so please pray that we as a family will be able to celebrate him fully.



(Written Tuesday night)

I am sitting in the house of a new set of friends that I’ve never met before. A generous couple from Rochester has opened their house to us to stay in indefinitely. What a blessing to be in the company of wonderful Christian people who are so gracious. This has been such a burden lifted off of us.  We aren’t sure how long we’ll be here at Mayo, but it looks like this could be a permanent place through at least next week.

We left Chicago this morning at 6:00 a.m., stopped at University of Chicago Hospital to get my medical records, and proceeded to Mayo Clinic (we arrived around 1:30 CST). I got blood work done today, and a CT scan is scheduled for first thing Wednesday morning.  After that we will begin the process of being “checkers”, which basically means people that show up with out an appointment who have to wait to see a doctor. We will meet first with an oncologist and go from there.

We have had some specific prayer requests of late. 1. That the appointments would be expedited, 2. that we would have peace and grace for what is in store for us, 3. and that the cancer is operable and there would be treatment options. This last request is of utmost importance – please, please pray for this one.

Answered prayers: the appointments have been moved up; we have had Grace and peace today. We are waiting to learn my medical status, but we praise God for answering prayer in a huge way. The school situation for Kendra (e.g. getting time off) seems to have worked itself out in an amazing way. Again she is so humbled by the people and district she works with. That was another answered prayer.

We are anxious for what the future holds but we are so excited about who God is transforming us into. I’m learning so much about who God is and how He operates. He is so good, and I’m at peace because “we know that in all things God works for the good of those who love him, who have been called according to his purpose” Romans 8:28.

Please pray that the CT scan would come back quickly tomorrow, that we could get into see a doctor quickly after that. Please pray that we would meet a doctor who is compassionate, progressive, aggressive, and optimistic. Please pray that my condition is operable and treatable. Please pray that we would have opportunities to share our faith and hope with those around us. Pray that we would have the grace and peace for whatever the future holds.

Again we can hardly count all the answered prayer requests that God is blessing us with. We have prayed for things for years and years that are now coming into reality in days. Every day is more challenging and more rewarding. To God be the glory.

Update 4/14/11

Dearest Friends, Family, and Prayer Partners,

This is being written on the road home from Mayo. We were able to get in to see an oncologist this afternoon – first the appointment was moved up to 3:30, and then to 1:30. We were told that if we were nearby to come NOW, so we did. When we met with the oncologist, he did a physical exam and asked us some general health history questions. Afterwards, he sat down and showed us the results of the CT scan. He did not have good news for us.

The cancer has spread locally outside of Ryan’s liver, making treatment options very limited.  Removing the tumors is not an option, a transplant is not an option, and at this point, this doctor feels that chemotherapy is a treatment, but not a cure.  He staged this cancer as Stage 4 advanced cholangiocarcinoma.  We are STILL waiting to see what Mayo’s interpretation of the biopsy results is, as the cancer cells are not entirely consistent with cholangiocarcinoma.

We have already scheduled an appointment on April 21st at the Cancer Treatment Centers of America.  We don’t expect to get a different diagnosis, but we know that their approach will be more holistic, which we are open to.  Chemotherapy will still likely be the regimen of choice along with other things.

Our hearts are breaking right now as it feels like doors continually get slammed in our faces. But we do cling to the fact that our God is a God of miracles, and we will continue to place our faith and trust in the same God that we did two weeks ago before this happened.  He loves us endlessly, and his plans are mysterious but we know that he works all things out for the good of those who love him.

Please continue to pray for grace and peace, for miracles, and for our family.  Our parents and brothers are taking this hard, and undoubtedly this will come as a blow to many people that care about us.  We want to encourage you to not lose hope, to not be bitter, and above all – please continue to lift us up before the Lord.

-Kendra

Update 4/11/11

Today has been an indescribable day. We had a up and down weekend but are so grateful for friends that have been surrounding us with support. I had made calls on Friday afternoon to a couple hospitals to begin lining up treatment. Everything was coming back 1-3 weeks to set up an appointment. We were not okay with that time frame. So I began calling and calling and calling all the doctors all morning and afternoon. Long story short we are on our way to Mayo Clinic as I type. This is an overwhelming answer to prayer. The told us if we showed up we can get in within 48 hours. Please pray that we would get into see the doctor as soon as possible. Pray that we would see the correct doctors and that treatment would begin and be lined up quickly.

We have had arrangements made for us for tonight, as well as for the first couple nights in Minnesota. This has been so gracious and overwhelming…a huge answer to prayer.

There are a few complications with Kendra and her work. The district has been tremendously trying to support us and encourage us and has done a wonderful job of doing so. Please pray that Kendra would have options and arrangements made so that she could take the time off that is needed. We have felt so blessed by her coworkers and supervisors and they couldn’t be more helpful and gracious.

Please continue to lift our families in your prayers. It is tough for all involved. Pray for grace and peace through out this. We continue to be overwhelmed by God’s glory. We are seeing it more clearly than ever and the world we live in is just starting to come into color. It’s incredible.

Finally please continue to pray that the cancer is treatable. It is extremely important that it is operable. We pray for a healing whether medically or miraculously. We know God is sovereign and we are leaning on his promises every hour. I feel as though God has prepared me for this my entire life. I’m so excited about the person he is transforming me into, the person he is transforming my wife into, and the couple that Kendra and I are becoming.

We can see God’s hand at work all over the place. It’s an unbelievable story and we have a front row seat.

Update 4/8/11

Dear Friends and Family.  Tonight we want to update you with where we are at in this journey that the Lord has suddenly diverted us onto.  Ryan received word from the doctor that did his procedure that the cytology indicates that he has liver bile duct cancer, which is called cholangiocarcinoma.  It has advanced outside of his liver, as the tumors are located right in the liver/pancreas/gallbladder region, as well as a nearby lymph node.

Now that we know what we are dealing with, we plan to get some different opinions about how to proceed.  We are in contact with three different institutions at this time, and we hope to be able to get information from them and even appointments!  Typically the waiting period is about 1-3 days while they review Ryan's case, and then 1-2 weeks to get an appointment.  PLEASE PRAY that things would move expeditiously.  We are feeling a tremendous urgency to see an oncologist as soon as possible and start treatment.

If you would like more information about this type of cancer, you can go to http://www.cholangiocarcinoma.org/.

We cannot thank you enough for continuing to pray for us.  You are each a blessing to us.  We have heard from so many people this week about how they are thinking of us and praying for us, and we know that the Lord is listening and covering us in his grace at this moment.

At times it feels like there is a weight on our chest and the anxiety is difficult. However we know that our God is sovereign. We are confident that His grace is sufficent for the task at hand.

Please pray for peace of mind as this will be our current reality without a treatment plan for the next couple weeks. Please continue praying for a miracle whether within or outside the confines of medicine. Pray that God would be glorified through this process and we would have open doors to share our testimony with others.

At this point we aren't sure what our needs are. We will attempt to go back to a "normal" routine next week and begin to prepare for future absences at school and work. However we can tell you that our eyes are opened to the glory of God and regardless of outcome we will never view things the same again.

Update 4/4/11

Friends and Family,

Our God reigns. He reigns in sickness and in health. The results came much quicker than expected. There was a doctor in the room that was able to look at the tissue samples. They do appear to be consistent with cancer. There are some unknowns. They were a little abnormal for cholangiocarcinoma so they are not sure what cancer it may be (although it is most likely cholangiocarcinoma). They will send the samples in for tests and we will know what it is for sure. It also appears to have already spread to a lymph node. There aren't sure how extensively it has spread to the lymph system. Until they can give us more answers, we can not make many decisions.

Kendra and I are continually overwhelmed by the support of friends and family and it has really helped us get through this tough day of waiting. This will continue to be a huge need for us in the future. Please lift up our families in your prayers as well. Many great things can come out of this and we are trying to be obedient. I was able to have three really cool conversations with the doctor and two nurses after the procedure as I shared why I'm not concerned. That my God is in control, and I DO trust Him.

Emotionally, we are doing okay - but up and down. We will send out more information when we know it, which will probably not be until later on this week. We have felt God's presence in the last three days and cannot say thank you enough for your support.

Psalm 71

Update 4/1/11

Dear Friends and Family,

It is with an uncertain and heavy heart that I write you today. Many people know that I have been diagnosed with a very rare liver disease, Primary Sclerosing Cholangitis. I have been managing the disease and the symptoms have been almost non-existent. I see a specialist in Chicago twice a year. I did so on Tuesday of this last week. Everything was routine until they called me with the results of my MRI of my liver. There is a large spot on the bile duct, and a couple small spots on the outside of one of the liver lobes. This spotting is consistent with cholangiocarcinoma. This is a very rare and serious form of cancer that is linked to my condition. The potential of cancer complicates matters. My doctors and most others will not do a transplant once cancer presents. There is a possibility that Mayo Clinic would treat the cancer and then do a transplant. All of the treatment options ahead of us carry substantial risks and there are so many unknowns.

I will have more tests on Monday. If or when cancer is confirmed, then we will try to get into Mayo as quickly as possible.

Here is the good news. This is almost never caught until the very late stages. We're hopeful that it is in the very early stages, if it is determined to be cancer (it wasn't in the last MRI six months ago). My blood work last week was all very healthy and stable. Because of this the doctor was very surprised from the MRI. I feel very healthy and don't have any symptoms. There are some treatment options: Radiation, Chemo, Surgery, Transplant. Kendra and I are choosing to focus on these things and thank God that he has protected us in these ways.
Please pray for me and my family. This is a scary time and yet my God is just as faithful now as he was this morning before I knew anything different. I am confident that He is in control, and I am only to concern myself with honoring Him. Pray that God's will would be done and we would be satisfied with His will. Please pray that this is a false alarm and the tests would come back negative. Pray for peace and grace for Kendra, myself, and my family. Feel free to contact us if you have further questions. I will update you as long as there is something to update.

Philippians 1:6
being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.