...Yet not my will, but Yours be done.

Luke 22:42
"Father, if you are willing, take this cup from me; yet not my will, but yours be done."

The prayer of our hearts for two years:  Father, please.  Please.  PLEASE!  Take this cup from us.  Heal Ryan.  Please restore him to health.  Please give us normalcy again.  Please do not let him go from this earth too soon.

But Lord, we do trust you.  We know Your character, and we know Your truth.  We stand on that knowledge, and that knowledge coupled with Your enveloping grace, are the only cards we have to play.  So Lord, we ask that Your will would be done, because we trust that even though it doesn't make sense on this side of eternity, somehow these plans are meant to prosper us (and to further Your kingdom, more importantly) and not to harm us.

I imagine that as Jesus prayed that prayer in the garden of Gethsemane, that he was probably feeling a lot like we are right now.  Dreading what lay ahead.  But yet also peacefully resigned to the will of the Lord.

You see, friends, we have been grappling with our own future this week, much the same way that Jesus grappled with his.  My blog post last Monday was almost triumphant in nature.  That was the tone of the day.  Things were looking up.  We were going to get out of the hospital.  Bleeding had stopped.  Our oncologist was starting to talk about the possibility of doing more treatments in the future.  We were ecstatic.

And then the bleeding started again.  In earnest.

And our doctor, full of compassion and concern, told us last Tuesday the words that we have so dreaded hearing.  We are out of options.  We have done everything that we can do to save Ryan's life.  It was now time to go home and enjoy what time we have left.  And that time is probably better measured in days and weeks than in months.

We have always wanted to keep this community, you, our support network, as up to date as possible, but facing what seems to be approaching has been difficult.  We needed time to process. I do hope you'll understand why we haven't been forthcoming with this news - it has ripped our hearts to shreds and we have struggled with how and when to tell all of you. I know that this post is going to be a tremendous letdown for literally thousands of people, and I so wish that I had better news to bring.

Thank you for the grace, love, and support you have shown our family for now over two years. Please pray with us for courage, comfort and peace right now. We continue to place our hope in the Lord, and we always will.

We love you.

Just left CTCA

Thanks for praying us out of here!

Scans tomorrow - and Merry Christmas

From our house (or hotel, where we are currently), Merry Christmas! Ryan has scans tomorrow morning and we will find out the results in the afternoon. We are grateful for your bringing us before the throne. I would say that our state of mind is pretty peaceful right now. We are trying not to pin a lot of emotions on these results - after all, God is still in control no matter the outcome!

Another twist in the road...

Exhale.

I finally just got back to the hotel room after a very long day with my husband of appointments, consultations, crying, feeling better, breaking down again, putting on a brave face for Colton, and going to another consultation.  Essentially, we have not received good news today, but we still have options moving forward.

This morning, we met with our primary oncologist and he delivered a couple of bad news blows: the two tumors that were left in August (very small) are a mixed bag: one shrank, one grew.  However, there is also another mass that has appeared.  Our oncologist thinks that it is probably another tumor, but our interventional radiologist (that we just met for the first time today) postulated that it also might be scar tissue or something from a dead tumor.  Who knows.  Regardless, the treatment that Ryan has been doing lately - the nasty, nasty chemotherapy treatment - is not effective any longer.  So on to plan K (we've exhausted all of the letters A-J, it seems).

Radiation theraspheres.  Some of the people reading this blog right now are probably very familiar with these, but most of you probably are not.  Theraspheres are tiny, radioactive (Yttrium-90) glass beads that are injected into an artery near the right lobe of Ryan's liver, with the intention of attacking and shrinking and killing the 2-3 tumors located there (I should note, before I forget, that there is not any active disease in his lymph nodes, nor is there any disease anywhere else in his body - praise God).  This will hopefully take place in the next two weeks.  Pray for a.) our insurance policies to approve it, b.) for the consultations and procedure to take place expeditiously, and c.) for no more disease to spread in the interim.

A couple of positives about doing the theraspheres: Ryan will get about a month break from chemotherapy - if not six weeks.  He is MAJORLY celebrating this.  Also, this procedure does not have very many side effects.  He's been feeling fine lately (aside from chemo symptoms), so hopefully he has the next six weeks to enjoy a small break from the drudgery of chemo.

Some patients have had wildly successful experiences with radiation theraspheres, some have not had any success.  Our doctor does still have a couple of chemotherapy treatments in mind, so this is not the end of the line by any stretch of the imagination.  This is a temporary setback.  However, earlier today, it felt like I had my heart ripped out of my chest.  This afternoon has been very, very hard and full of rage and tears, but at the end of the day, I know that we serve a God who is sovereign, loving, and wise.  Nope, this wasn't my choice - I wanted to hear those words "cancer free" so badly today, but those will apparently be saved for another day in the future.  If this is His will, if this is His plan, then we gladly follow this newest twist in the road and trust Him implicitly.


Proverbs 3 (NIV)

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.

Life these days

Hello family and friends,

In case you haven't seen much of us lately, do not be alarmed.  We are alive.  We are doing as well as we can!  I'm crazy busy with school, mothering, caretaking, and some projects.  Ryan is busy with projects, work, speaking, and traveling.  We have been home very little on the weekends lately.

We are grateful.  Who would have thought back in those dark days of April 2011 that we would be here right now - busy, going about our lives, and doing our best to obey the things that God has placed in our lives.  It isn't easy - He continually calls us to step out in faith and do some tasks that seem extremely difficult.  Yet we know that His grace is sufficient for every day, and we are grateful for that grace that continues to buoy us down this long road.

The chemo blues

Ryan is on his fourth or fifth cycle of oxaliplatin, 5FU, and Erbitux.  It has been a battle.  I would definitely say that this has been his toughest chemotherapy combination that he has yet faced.  The side effects are numerous: rash on many different parts of his body, extremely tired, sensitivity to cold, virtually no appetite, acid reflux, digestive issues, sores in his mouth, the list goes on and on.  Taking care of Ryan has been a pretty tall order lately!  I can assure you that his attitude and his resolve is completely unwavering.  He is so nonchalant about getting treatment, even having a good attitude about the five-hour round trips to Chicago every two weeks.  His dad is the person that is making this trip.  We are thankful for him!

Scan time!

It is almost time for those fun, fun days of the year known as scan time!  These will be taking place on Thursday and Friday, October 25-26.  We are glad that we can combine this trip with some family time with Corey - he has a home game only 20 minutes away from Zion on the 27th, so we will stay after our appointments through the following Sunday.  Ryan will be getting a CT scan done on Thursday the 25th, and we will get results on Friday morning.  Given his lack of any pain or alarming symptoms, I am hopeful for good results!

Prayer requests

Friends, this road is long and hard.  I would definitely say that Ryan and I are both weary and downtrodden at the moment.  Right now I feel like I'm stuck on a perpetual Wednesday.  Nobody likes Wednesday because it's in the middle of the week and it's really far away from last weekend and the upcoming weekend.  It has been a really, really long and hard 18 months and we are exhausted.  Yet we know that we still have a far piece ahead of us.  Please pray for renewal and encouragement.  Please pray for us to keep our eyes fixed on the cross and that we would not feel any temptation to be disobedient while things are tough.  We long to glorify God at every turn of this journey, and it's hard to do so when we we feel like we are stuck in a valley.


Have we told you lately, "thank you"?  There are so many of you that are reading these words this moment and you have been reading since those dark days of April 2011 that I mentioned earlier.  Thanks for walking this road with us, however long you've known us.  We are thankful for your prayer and for your willingness to come alongside us as we figure out this journey that God has placed us on.

So close to going home, yet so far away!

Hello friends,

Well, if this hospital stay has been a test of my patience, I must say that at the moment I am failing that test miserably.  I am trying to work on my attitude, but at the moment it is not the greatest. :(

To sum it up succinctly, there hasn't been a lot of urgency on the part of the generalist overseeing Ryan's case to move this process along quickly.  I don't think that he had a firm concept of the fact that we have a two-year-old that we both miss terribly, that all three of us (Ryan, myself, and my father-in-law) have jobs with responsibilities - I am missing two days of back-to-school meetings this week - and that we left home on Friday just expecting to "run to the ER and back".  Four days later, here we are still.  Now he knows how we feel, after we had a conversation with him this morning.

The good news is that it really seems like we are leaving today.  We were initially told by a specialist this morning that Ryan would be getting a test done tomorrow at 11 a.m., but my husband channeled his frustration into a very direct persuasion that magically moved the test up to 4 p.m. today. :)  Once this test is over, Ryan will have to be in the recovery room for a short spell and then we can get on the road.

Please pray for traveling mercies, a Christlike attitude, and that we wouldn't waste opportunities while we are here at CTCA to share the hope that we have.  We know that God doesn't allow things like this to happen by accident.

The story of the slowest mad dash to Zion, ever.

Hi friends,

I realize that some of you are pretty sketchy on details of what went down with Ryan yesterday.  Of course, most of you know that we got amazing news this week about his cancer.  What you may NOT know is that we also met Chris Tomlin this past Thursday after his Unity Fest concer, which was super exciting!  I'm planning on writing a post about that soon. (I was going to write it yesterday afternoon, but yesterday fell apart...more about that right now.)

So after a phenomenal week, Friday morning started out kind of sluggish.  Because Ryan and I were out whooping it up late Thursday night (my parents watched Colton that night, so we were certainly footloose and fancy free!), I slept in kind of late.  Ryan woke me up around 9 a.m. to tell me that he had not slept well the night before and felt like he was coming down with some sort of cold or something. I got up and made him breakfast and sent him to work late with a mug of green tea and a kiss on the cheek.  I was mildly concerned because he was developing a "cold" and had had such low white blood cell counts this week, but didn't think much of it.

I went and retrieved Colton from my parents and went to a farmers market to get vegetables for a soup that I was planning on making Friday evening.  As I was chopping veggies and Colton was busy making total chaos of the house with his toys, Ryan texted me and asked him to come get him.  I texted back that I would come get him as soon as I got the soup going, which would only take a few more minutes.  Five minutes later, he called me and asked me again to come get him.  I told him, "Sure.  You just texted me a few minutes ago, though.  I was already planning to come."  He told me that he had no recollection of texting me and that he had just thrown up.  So I dropped the veggies, grabbed rain boots as it was super soggy outside, and Colton and I loaded up quickly. 

On my way to get Ryan, he called me two more times (it's not THAT far of a distance).  Each time he sounded more and more distant and "out of it".  I was beginning to get really scared because he wasn't acting completely conscious and he was talking very strangely.  When I arrived at Grace to pick him up, I found him laying down on the couch at his parents' house next door to camp, with his summer media specialist Brian sitting by him.  Brian told me that he had been in a meeting with Ryan when Ry suddenly started to act...not lucid.  Ryan abruptly got up and left the room, and Brian heard him throw up and try calling me from the bathroom.  Brian, if you're reading this, know that I'm really thankful for the way that you took care of him and didn't leave his side while I was coming to get him!  You are a gem. (Even if you DO go to U of M.) ;)

Ryan's dad arrived at his house and we decided that Ryan should get to an ER ASAP.  We decided that I would take Ryan to the ER and Steve would stay with Colton for the afternoon.  So I loaded up my groggy husband and we took off for Muskegon.  Mercy Hospital's ER turned out to be an exercise of patience, futility, and frustration.  Essentially, we were there for four hours, Ryan did not get any fluids or meds, and he started to get belligerent when I tried to give him gentle suggestions.  This belligerent side of Ryan is NOT something that I've ever seen before.  Plus, he started to get some seriously strange GI symptoms.  Muskegon and CTCA corresponded on the phone and it was decided that Ryan needed to get to Zion that day.  Unfortunately, we could not go by ambulance (still trying to figure that one out), so we went in Steve's car.

This is when things got really dicey.  Ryan was still fairly disoriented, and was asking Steve and I the same 10 questions every five minutes: he inquired about his horses, our dog, our son, his brothers, he asked if Brian the media specialist was okay, he had no recollection of anything that had happened to him that week, and he wanted to stop and use the restroom every fifteen minutes.  We made three stops between Muskegon and the Michigan/Indiana border.  Then, as we crossed into Indiana, Steve's car started to act weird.  We pulled off at a gas station in Lake Station, Indiana and decided that it was not wise to risk going any further.  After checking several nearby car rental agencies and discovering that no one in northern Indiana rents a car past 6 pm, we called Ryan's younger brother Corey who goes to school in Deerfield, Illinois to come get us (this was an hour and a half from where we were).  As we were waiting, Ryan's demeanor started to return to normal and he was starting to feel better.  We were relieved that his symptoms were not nearly as intense, as waiting was hard enough on us already.

Finally, Corey arrived and took us the rest of the way to Zion.  We FINALLY arrived around 11 pm Central time and he was processed and admitted within the hour.  All in all, the mad dash to Zion took seven and a half hours.  Steve got a hotel room across the street and I stayed in the room with Ryan.  When we woke up this morning, Ryan was definitely beginning to recall some things that happened this week (he remembered the previous trip to Zion, and the Chris Tomlin concert), but he remembered almost nothing from Friday.

So far, he has had an Xray, a CAT scan, an MRI, blood cultures, urine samples, and several physical exams.  The doctors have ruled out high ammonia levels, there is no metastasis of any kind on his brain, his white blood cell count is normal, but his platelets are low and they won't entirely rule out some sort of infection until the cultures come back.  We thought that we would probably go home tomorrow (Sunday), but the on call doctor told me that she doesn't think that we will probably go home until Monday at the earliest, when Ryan's primary oncologist can visit him and evaluate him.  If Ryan does have some sort of infection, we might have to rule out treatment this week AGAIN.

Sooo...that is the long story of what has transpired.  We are doing okay.  My heart was in my throat the entire afternoon and evening yesterday when I had no idea what was wrong with my husband and he was acting so unlike himself, but today it is reassuring to see him at his normal self, eating food, being a polite, sweet man again, and able to recall things that have happened.  His GI symptoms are lessening, too, so that is an excellent sign.

We covet your prayers for wisdom for the doctors, peace as we continue to try to get answers about what's happening, for grace and strength to get through these long days of waiting and cooling our heels, for continued healing...and for this mama's heart as she so sorely misses her little boy.  I have only seen Colton for about an hour in the last forty-eight, and likely will not see him again for at least forty-eight more. :(

We will continue to update Facebook and our blog...especially now that I know where they hide the computer lab in this huge hospital. ;)

-kp

Exodus 14:14 "The Lord will fight for you, you need only to be still."

Update!

Brief update as Ryan is getting a few things done to him by his nurse...

1.) We met with the doctor this afternoon.  He is pumped and thinks that Ryan's prognosis is just amazing and miraculous!  The fact that it is out of the lymph nodes is really, really encouraging.  He said that we're starting to enter into "uncharted waters" because there are so few Stage IV cholangiocarcinoma patients that reach this point.

2.) For the time being, we are going to do four more cycles of 5FU/Erbitux before we do more scans - this will make the next scans sometime around mid to late October.  He might be restaged at the next scans.

3.) Around the bend: pending the results of the NEXT scans, we are going to look at possibly meeting with a surgeon (!!!!) to get the rest of the tumors OUTTA there.  <--- That means REMISSION, folks!

4.) Unfortunately, Ryan's counts are so low that we are not able to do treatment this week.  He is going to get 3 neupogen shots this week and we'll try again next week - yes, that means another trip to Chicago. :(

Prayer requests from Zion, Illinois.

Scans.

Ah, those dreaded scans.  The moment where we contemplate whether it's better to know what's happening in Ryan's body, or whether ignorance is bliss.  Like them or hate them, scan results come back tomorrow, around noon Eastern time.  As I write this, Ryan is probably loaded up on barium and getting ready to enter the little tube.  We sincerely covet your prayers as we await the results tonight and tomorrow morning.  Pray for healing. Restoration. A miracle. Peace. Wisdom. Grace. Comfort.

Jer. 32:27, "Behold, I am the Lord, the God of all flesh; is anything too difficult for Me?"

As anxious as we are about the results tomorrow, we claim this promise in advance: our God is still going to be the same loving, merciful, gracious God that He is today.  Our trust in Him will not be shaken whether the results are the best we could have hoped for, or whether we are devastated.  His character does not change like the shifting sands of our emotions.  No matter what we (or you) face in life, we must know this.

Psalm 91

1 Whoever dwells in the shelter of the Most High

    will rest in the shadow of the Almighty.

2 I will say of the Lord, “He is my refuge and my fortress, 

    my God, in whom I trust.”

3 Surely he will save you

    from the fowler’s snare 

    and from the deadly pestilence. 

4 He will cover you with his feathers,

    and under his wings you will find refuge; 

    his faithfulness will be your shield and rampart.

5 You will not fear the terror of night,

    nor the arrow that flies by day,

6 nor the pestilence that stalks in the darkness,

    nor the plague that destroys at midday.

7 A thousand may fall at your side,

    ten thousand at your right hand,

    but it will not come near you.

8 You will only observe with your eyes

    and see the punishment of the wicked.

9 If you say, “The Lord is my refuge,”

    and you make the Most High your dwelling,

10 no harm will overtake you,

    no disaster will come near your tent.

11 For he will command his angels concerning you

    to guard you in all your ways; 

12 they will lift you up in their hands,

    so that you will not strike your foot against a stone. 

13 You will tread on the lion and the cobra;

    you will trample the great lion and the serpent.

14 “Because he loves me,” says the Lord, “I will rescue him;

    I will protect him, for he acknowledges my name.

15 He will call on me, and I will answer him;

    I will be with him in trouble,

    I will deliver him and honor him. 

16 With long life I will satisfy him

    and show him my salvation. ”

Let the prayers begin!

Hello everyone!

I am writing this update from the hotel dining room in Zion as I am waiting for Ryan to get his pump hooked up for the second time - he has already received the rest of the infusion this morning and afternoon. We met with our PA this morning and he was really pleased with Ryan's state of being heading into the new cycle. He told Ryan that in comparison to most other patients, Ry's rash isn't that bad (a point of view that perhaps my hubs doesn't agree with!). A few blood counts are low, but not low enough to withhold treatment. I am going to take the lab sheet home and see what foods I can get into him that will help bolster these counts!

We haven't yet mentioned it yet publicly, but two weeks from now is going to be a very big week for us. We are going to be in Zion August 6-8. Monday the 6th, Ryan will be getting a PET scan done, and we will find out the results on Tuesday in the afternoon. Wednesday he will be getting treatment and then heading home.

These scans are a very big thing for us. They will show the extent of the impact that radiation has made - these will be the first scans that have been done since April, when it was decided that radiation could have a big effect on his cancer. So naturally we are both excited and nervous about these. The good sign (physically) is that there has been virtually no sign of the same pain that Ryan had before the last scans in April. We are asking that if you could think to pray for us the next couple of weeks, please do so any time that we pop in your mind! We need peace and comfort - the weeks leading up to these events are very unsettling. We also are crying out to God for healing, for negative scans, for a miraculous healing - for deliverance. We know that we likely still have a long road ahead of us, but to have encouraging news would be such a shot in the arm!

And yet though we pray for good results, we pray also that God's perfect will would be done. We know and trust that He is sovereign, and once again we are choosing to submit to His will for our lives, no matter what that entails. We desire to glorify His name from the highest of mountaintops and the lowest of valleys. He is good. All the time.


Bring The Rain - MercyMe

I can count a million times
People asking me how
I can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You

Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

On the road again...

Hey prayer warriors,

Holy cow, did those two weeks ever fly by!  Ryan and I have had an incredible time together in the interim between radiation/chemo and the first cycle of FOLFOX and Erbitux (which number cycle this is, I have no idea...I've totally lost count). We are headed to Chicago here in a little while so that we can do this cycle there.  We had planned on doing the treatment in Muskegon (near our hometown), but there was a lack of communication from Chicago to Muskegon, and then one of the drugs was rejected by the insurance company when Muskegon tried to clear the drugs through insurance.  Chicago is confident that there will be no billing issues with them, so we're on the road again...  Hopefully, this will all be cleared up two weeks from now so that we do not have to go to Chicago AGAIN and we can just go to Muskegon.

I have a long list of prayer requests to share with you:

First, I'm fearful, friends.  I know of two people currently going through FOLFOX that are doing just fine with the side effects (as a matter of fact, I recently did an all-day walking tour of Washington DC with one of them, and he held up quite well), but I am still scared of Ryan not doing well.  One of the FOLFOX drugs is Oxaliplatin, which has quite a few side effects and is a cousin to Cisplatin, the ugly drug that Ryan was on last year that caused so much nausea and numbness for him.  PLEASE pray for minimal side effects.

Second, we are mulling over, praying about, and seeking God's wisdom over three pretty major decisions that will have lasting impact on our lives.  Please pray for clarity and wisdom.  I can't share a ton right at the moment, but please just pray that God's will would be done, and that we would be guided by Him to make wise decisions.  We are very excited about all three possibilities.

Third, our sister-in-law is having a baby tomorrow, our third nephew!  Please pray for Jeremy, Megan, and baby boy Prudhomme - that they would be healthy, safe, and happy.  They live in the Dallas area.

Fourth, starting tomorrow we are making a big lifestyle change.  After having researched and been slapped across the face by some pretty compelling research and anecdotal evidence, we have been explicitly reminded by God about the importance of healing through nutrition.  This has nothing to do with our philosophy on eating animal products (Heaven knows how much we both love dairy and meat), but we are going to become essentially a "vegan/organic" family.  This is going to be really challenging for me as I am a typical Midwest young wife, and Ryan is a typical Midwest husband - I make meat and potatoes, he eats meat and potatoes.  We need to ensure that we are getting enough protein into his system and that he can maintain his weight, but we are confident that this is where He is leading.  If you run across Ryan and he seems grumpy, it could be that he is going through steak withdrawal.  Be kind. :)  Oh, and share delicious, easy vegan recipes with me if you have them!

Well, I think that covers the gamut of where we've been at.  We love you.  We continue to covet your prayer and your support and encouragement - this cancer journey is a long one, and at times is a very lonely one. We so love your comments, cards, and words of wisdom.  Thank you for walking with us!

...he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." 

2 Corinthians 12:9a

Week 5 appointment times

Ryan just texted me to let me know that he is safely at O'Hare. Praise God that he has not yet run into any major hassles while flying back and forth each week. We are so grateful.

This short week will be a busy one. I started off the work week with a sick day, because my son believes in sharing! He had a really mild bug on Sunday, and it seems to have struck Mom a little worse. Pray that Ryan will be able to avoid this bug and stay healthy. Other than that, we have work projects, wrapping up the school year, and normal, everyday things.

Ryan's fatigue continues to grow each week. I really, really hope that he can take a quick break once he's done with radiation so that he can get his feet underneath him. He is whipped, and not quite halfway through this journey.

This week, he has appointments at:
Tuesday, May 29: 1:40 PM CDT
Wednesday, May 30: 8:10 AM CDT
Thursday, May 31: 8:40 AM CDT
Friday, June 1: 7:30 AM CDT

Thanks for praying for us! We are encouraged. And while you're praying, please remember our friends the Hansens in your prayers. Collin Hansen lost his battle against cancer last Friday. He was diagnosed at the same time as Ryan (but with stomach cancer), and his death has rocked our community. Please pray especially for his wife, Courtney, son, Cole, brother, Blake and his family, and his parents, Goeff and Tami.

Week four appointment times

Wow...so when I typed "week four", it occurred to me that time has both crawled and flown by this last month.

Without further ado, here are the times for Ryan's treatment...as always, the posted times are Central time.

Monday: 2:10 pm
Tuesday, Wednesday, Thursday: 8:40 am
Friday: 7:30 am

We are so excited to be seeing a light at the end of the tunnel. Ryan is approaching the halfway point of treatment, and I only have three short weeks left of school - then we can all be TOGETHER again! Praise God.

Emotionally, I think we are all okay. Colton seems to be adjusting and is much less clingy than he was the first weeks Ryan was gone. I'm seriously busy with school and life, and doing fine. I would probably say that it's hardest on Ryan, since he's the one away from home...but he's okay. This week will be a little less lonely because three guys from Grace Adventures are coming TO Ryan to do part of staff training at CTCA with Ryan. Excellent!

Physically, he has felt better. He looks whipped. The combination of heavy radiation and Xeloda is definitely draining...but his attitude is so good about it. Please pray for lessened side effects. During week 2, he felt good well enough to run and be active, but last week he was so physically run down that he felt like going downstairs in an elevator was daunting!

We have everything set for him to fly back and forth from Muskegon from now on, and they will be really short, easy flights. Once school is over, we will start commuting by car again since I'll be able to drive him. Speaking of when school is over, I'm interested in what we can do for some (cheap or free) fun family outings. One thing that we are looking forward to is to grab some cheap tickets for when the Tigers play at Wrigley in June. I hope that we can see Verlander or Porcello pitch AND bat! :)

I think that ends this weekly update. Thanks so much for continuing to pray for us. We are super thankful for each and every one of you that pray for and encourage us!

Week three appointments

Oh goodness...it's Tuesday evening and I just realized that I did not yet post anything to the blog for Ryan's treatment times! My apologies.

Here are the remaining times:
Wednesday - 8:45 am CDT
Thursday - 8:40 am CDT
Friday - 8:40 am CDT

If you could throw in some prayer for me, too, I would appreciate it. I'm in the midst of a very tough, busy week and am feeling like there is just not enough Kendra to spread around. I am just stressed, no major concerns. I will be VERY glad when the next three and a half weeks are done and we can be reunited! In the meantime, I will continue to trust in God's perfect plan and timing. I know that there is a lesson in here that He is teaching me...I just know it. When I flesh that out and have a couple of hours to myself to write, I'll let you know what He's up to. :)

I wait quietly before God,
for my victory comes from him. He alone is my rock and my salvation,
my fortress where I will never be shaken. (Psalm 62:1-2 NLT)

Timely prayer

This Tuesday is when Ryan will begin his radiation treatment in Zion. He flies out at noon and will begin his treatment that afternoon.

I thought that it might be helpful to mention when his treatments will be so that people can know when to specifically pray for effective treatment and minimal side effects.

So this week it will be (and note that all times are Central time):

Tues: 2:00 pm

Wed: 9:10 am

Thurs: 10:00 am

Fri: 9:10 am

He will be flying home Friday and then either driving or flying back the following Monday (we aren't sure yet).

An introduction to the world of radiation.

Hello all!

This morning we met with our new radiation oncologist, Dr. Eden.  Let me start off by saying that besides my family members, Dr. Eden may be my new favorite person in the entire world.  He began the meeting by saying how encouraged he was that Ryan's cancer is localized and therefore treatable, and he firmly intends to take an aggressive, curative approach to treating Ryan instead of just palliative care.  He said that Ryan is young, strong, and "healthy", with a son and a wife to live for, so there is no point in not "completely going after it".  At this point, I screamed out a very happy, excited "Heck yeah!".  Tears flooded my eyes as someone said to us for the first time in a long time, "We want to try to get rid of this cancer."

We spent a long time discussing possible side effects, some of which are normal (fatigue, skin irritation, GI symptoms) and some are more rare and serious (long-term damage to the kidneys, colon, secondary cancers, possible infertility, and liver problems).  We are okay moving forward in spite of these...after all, we have very little to lose and a whole lot to gain.

So here's what the process will look like: we are on our way home right now, and next week Ryan will fly or drive down to Zion alone to have a two-day series of appointments to begin prepping for radiation treatments.  They will give him small tattoos to map out where they will give him the radiation (down to sub-millimeter accuracy), and mold a special board for him to lay upon so that he lays in the exact same position every day.  He will then fly back home for the last weekend in April and his treatments will likely begin the first week of May.  He will need to be down at CTCA every weekday for seven to nine weeks, with a break on the weekends.  He will concurrently be taking the same oral chemo that he has been taking because that chemo makes radiation more effective.  Colton and I will be able to see him on weekends (either we'll go to Chicago or he'll come home), and once school is done for the summer, I fully intend to be with Ryan until his treatments are over.

This doctor's faith was very evident from the get-go.  He said that he has a strong faith and believes that God uses him as an instrument of healing.  He insisted that he will pray with/for us the whole time that he's treating us.  In other words, he meshed really well with us.  We asked him about doing radiation close to home and while he did not say anything negative about any other provider, he did say that he believes that CTCA's radiation oncology department is second to none.  We felt extremely confident after the appointment was over that we should be in Zion for treatments, especially after having met Dr. Eden and hearing his approach to this.  After all, what Christian would not feel comfortable treating in a place called Zion?

Since we have elected to have the treatments done in the Chicagoland area, we are cognizant of the fact that our lives will be in upheaval for the next couple of months.  We are confident that God will provide for our needs, financially and logistically, in order for Ryan to get the best care possible.  We are already putting plans in place on how to juggle travel, lodging, "single parenting" (for me), nutrition needs for Ryan, and some family members are already asking if they can take time to stay with Ryan in Zion.  Truthfully, it will be a hardship for me and my students for me to be with him much.  I have a lot of responsibilities at school, and while Ryan absolutely comes first in my life, I need to balance that with the needs of my students.  This is a very busy time for me at school as I push to get my kids through their last chapters of the year and then prepare for the final exam.  Ryan has insisted that he will be okay without me - after all, the treatments for this do not seem to be too rigorous, and the side effects are very manageable.  This is why we have a support network in place, and I feel at peace with allowing other people to step in and help.

Specific prayer requests: for everything to go smoothly next week at the prep appointments on Tuesday & Wednesday, for wisdom & guidance & God's directive hand to be with the doctors, for provision for our needs, and for peace and comfort as we make this new bend in the road.  We continue to covet your prayers, and we praise God for how He continues to provide for our every need and that His will for our lives is absolutely perfect.  No matter what happens in the next couple of months, no matter what fork in the road comes along in this journey, our deepest desire is that His Mighty Name is glorified.


Psalm 24

Of David. A psalm.
1 The earth is the LORD’s, and everything in it,
   the world, and all who live in it;
2 for he founded it on the seas
   and established it on the waters.

 3 Who may ascend the mountain of the LORD?
   Who may stand in his holy place?
4 The one who has clean hands and a pure heart,
   who does not trust in an idol
   or swear by a false god.

 5 They will receive blessing from the LORD
   and vindication from God their Savior.
6 Such is the generation of those who seek him,
   who seek your face, God of Jacob.

 7 Lift up your heads, you gates;
   be lifted up, you ancient doors,
   that the King of glory may come in.
8 Who is this King of glory?
   The LORD strong and mighty,
   the LORD mighty in battle.
9 Lift up your heads, you gates;
   lift them up, you ancient doors,
   that the King of glory may come in.
10 Who is he, this King of glory?
   The LORD Almighty—
   he is the King of glory.

Praise God from whom all blessings flow.

Here was my Facebook status from Sunday night:

I'm so glad that we chose to ask people for prayer this week.

Here are very, very specific answers to prayer that we've had:

1. We felt more peaceful heading into these scans than I think we ever have before.  Sitting in the little room is always agony for both of us, and we were jovial and joking around the whole time.  My stomach only danced a couple of times inside my abdomen, instead of doing the cha-cha for 24 hours straight before the appointment.
2. I had a meeting on Monday afternoon that went as well as I could have possibly hoped for.  I can't share details at this point, but praise God for the results of it.
3. Ryan's scans showed that everything (tumors, blood work) totally stable again four weeks after starting the new treatment.  This is the best that I hoped for!  We have scans again in eight weeks and I'm going to throw my prayer energy into asking God for some shrinking of these darned tumors at that point.
4. Our oncologist mentioned that there is a new chemotherapy drug in the midst of FDA approval right now that he is excited about with regards to the treatment of cholangiocarcinoma.  I REALLY wish that I had asked him what the name of it is, but I forgot to. :(  If you read this and you're interested in learning more, I can get ahold of him and I'll ask for you.
5. Ryan is continuing to get more and more inquiries on speaking engagements. He is speaking several times this upcoming month and we are both sooo excited about how God is using this trial in our lives to impact other people!  By my estimate, around two thousand people have now heard Ryan (and/or me) speak at various events, and we have now had over 75,000 hits from 8,000 unique visitors.  I'm not boasting, because this has nothing to do with us, two ordinary people.  I give God the glory for how He has turned a painful situation into a way for people to draw closer to Him.  If we have to walk through this (which we do, unfortunately), there may as well be some eternal value to it!

We are in high spirits right now.  It feels like life is moving forward, ever so slowly...and even though the future still remains a giant question mark, we continue to remain absolutely certain that we serve an all-powerful God who works miracles, and has plans to prosper us - not harm us.  He gives us HOPE and a FUTURE!

The shifting sands of change.

Last night I had a dream.

I had a dream that we were sitting in one of the little oncologist's offices at CTCA.  We were about to receive news from our oncologist about Ryan's scans.  I don't remember exactly what the results were, because I was jarred awake by our son screaming around 5 am today.  He's not in love with his pack n play.  I'm not in love with him not sleeping through the night.

What I do remember about the dream is that I was frightened out of my wits.  THAT is really close to reality.  As many times as we've been through this, it does not get any easier to sit in that little room and get the news.  It's so nerve-wracking, and I feel like my heart is going to pound out of my chest.  Without exception, I jump every time Dr. Sheelvanth knocks on the door.

So now to the news that you've been waiting for.  Today's results were a little mixed.  Most of the problem areas (small tumors, 2 enlarged lymph nodes) are stable since November's scans.  That is great news.  However, the tumor that has been the largest the whole time - around 1" in diameter - has grown to about 1.5".  That is not great news.  Our oncologist could not speculate about whether it was because we have not had the most consistency since November in keeping to his schedule, or whether perhaps the tumors are becoming resistant to the chemo drug that he is on.

So what we've decided to do is to switch drugs.  Ryan's cycles will go from being four weeks, to two weeks long.  He will get an infusion every two weeks (once in Chicago, once in Muskegon), and he will be on an oral chemotherapy for seven days at the beginning of each cycle.

Side effects should continue to exist, but we've been assured up and down that they should be pretty manageable.  Ryan's hair might thin a little bit - I am not pleased about this, but Ryan doesn't mind too much.  I must just be a girl or something.  To be honest with you, I'm not crazy about change.  It's hard, and it's scary.  I was just starting to feel like I had a grip on everything, and now the rug has been slightly taken out from under me again.  I am not crazy about this feeling.

Overall, we are grateful that things are not spinning out of control.  Our doctor rated this at about a "seven" on a 10 point scale, with 10 being the best news possible.  Ryan's liver enzymes are at a totally normal level, which they haven't been for a few months - wonderful!

We will do scans four weeks from now.  There is a possibility out on the horizon that Ryan might do a radio frequency ablation, which is targeted radiation to a particular tumor (likely this one that is growing). If this were to happen, it would be like a minor surgery with a few days' recovery period.

We are grateful especially for your prayer support.  Please continue to pray, and pray often for us.  We continue to remain confident in our God's ability to heal, without doubt.

And in Ryan's own words: "Good news doesn't mean I'm healed, and bad news doesn't mean I'm dead."

So true. :)

Psalm 91

 ¹ Whoever dwells in the shelter of the Most High 
   will rest in the shadow of the Almighty.
² I will say of the LORD, “He is my refuge and my fortress, 
   my God, in whom I trust.”

Cycle 10

I had to go back on a calendar and count from April to see how many cycles we have done...we literally lost count. We are starting cycle 10 today. Please pray that this is very effective treatment, and that Ryan will feel pretty well afterwards.

I would be a liar if I told you that my spirits are great heading into it. I have been eyeing this date on the calendar for the last few weeks, dreading the day when our little shred of normalcy would come to an end. I am ticked off that cancer hasn't ended yet. I am cool with it so long as there is a light at the end of the tunnel, but there is not a cure in the foreseeable future and that just sucks. Yes, I know that I should be thankful instead of complaining, but wouldn't you rather that I not placate you with fake happiness? All the time the last two weeks I feel like our current state of life, with our hands tied by this cursed cancer, has been exacerbated by various circumstances. I'm not depressed, but I'm very sad. Just sad. And I hurt. Sigh. Okay. You have my express permission to stop reading this depressing manifesto. I know what's truth, but I'm just not feeling it in my heart at the present moment. Do you ever feel like there is a disconnect between your head and your heart?

So I'm going to end this with a call for encouragement from you, dear reader. I need fresh scripture, fresh promises. I am willing to stay in this fight but sometimes I need someone to prop me up. Can you do that?

We love you all and continue to covet your prayers for healing that only a mighty God can provide. Your importance to us cannot be minimized!

Tips on how to treat a cancer patient

Here is an article on what to do when someone you know gets cancer. This is put out by the same place I get treated at.
http://www.stltoday.com/lifestyles/health-med-fit/fitness/several-approaches-work-in-dealing-with-patients-who-are-fighting/article_9128b315-ec72-5881-890d-4e86902b3c99.html