At home, and happy!

Hello friends and family,

I would like to happily announce that this blog is being written from the comfort of my living room in New Era, Michigan.  Ryan and Steve and I returned around 3:00 AM yesterday morning.  It has been a very busy time trying to get things settled, organized, and for life to kind of return back to normal.  To give some perspective, Ryan and I have only been home for about 6 out of the last 14 days!  Naturally, there are a lot of bills to pay, laundry, housework, and bags to unpack (I hadn't even unpacked our suitcase from going to Zion for scans last week before we left again).

Ryan is doing pretty well, but has a long way to go before he's "normal" again.  Right now his demeanor and stamina is kind of like what it is after he gets an infusion.  But the story is, essentially he had a simple infection that has started to go systemic.  Actually, because his white blood cell counts were so low, it advanced extremely quickly.  He was pretty much fine last Thursday, and he was septic by Friday afternoon.  He also had a small spot of his body that was hemorrhagic because of the infection, so his oncologist is giving Ryan another full week off of treatment to completely heal from this.  That puts his next treatment around August 28th.  That will be an entire month off, which is the longest he has gone for the last sixteen months without treatment.  Although I celebrate that he has some time off to recuperate from a very, very long stretch of chemotherapy, I would be a liar if I didn't say that I was slightly nervous about losing ground.

Speaking of momentum, we found out from a CT scan this week that his tumors are dying quickly.  The two spots that I mentioned he still had last week had shrunk noticeably in only one week.  We are praising God for this news, as it finally seems like we have struck the right chord in treatment.  Radiation? New chemo regimen? New nutritional lifestyle? Just simply God's timing and healing?  We aren't sure which combination of those four things it is, but we are grateful that the Lord has chosen to move in this way.

We are also extremely thankful for the people that helped us through this.  We are especially grateful for Steve, who accompanied us on what was SUPPOSED to be a short trip to the ER, and turned out to be a multi-day ordeal in Zion.  Cathey and my parents took care of Colton and Tuff, our dog.  Corey picked us up when Steve's car broke down and took us to Zion, and then he let us use his car the rest of the trip.  Chad, Ryan's friend and coworker, looked after our horses and even made sure that they made it to the farrier.  Lots more people offered their help and support.  And we could not be more encouraged and grateful for the support that people have given us through our blog and Twitter and Facebook.  We are floored by the love and the excitement and concern that people have demonstrated to us the last couple of weeks.

In spite of the unexpected infection and hospital stay, we have had a VERY positive August.  We could not be more thrilled with the news we've received and are riding a tidal wave of happiness.  Medically speaking, Ryan should not be alive, and he should not be doing as well as he is.  By God's grace, we are in this position, and we give Him all the glory and honor.

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. :(

Praise God! Praise His Holy Name!

Psalm 100

1 Shout for joy to the Lord, all the earth.

2     Worship the Lord with gladness;

    come before him with joyful songs.

3 Know that the Lord is God. 

    It is he who made us, and we are his;

    we are his people, the sheep of his pasture.

4 Enter his gates with thanksgiving 

    and his courts with praise;

    give thanks to him and praise his name. 

5 For the Lord is good and his love endures forever; 

    his faithfulness continues through all generations.

Today is a day of rejoicing.

Today is a day of remembering God's faithfulness to us.

Today is a day of praising Him recklessly.

He has been so very, very gracious to us this day.


This morning we met with Dr. Eden, the oncologist who oversaw Ryan's radiation treatment.  He was smiling ear to ear as he entered the small examination room, which immediately buoyed our hopes!  He told us that the report from the PET scan read that Ryan's cancer has considerably shrunk/disappeared.  Nodal disease?  Appears to be gone.  Small lesions that covered the liver?  Gone.  All that remains are: two. tiny. tumors.  About the size of one quarter, each.

This afternoon we will meet with our primary oncologist, Dr. Sheelvanth.  Dr. Sheelvanth has been directing Ryan's treatment plan from the very beginning.  There are a few options that we discussed in April that will be on the table:

1. Continue with systemic treatment (i.e. more chemo)
2. A chemoembolization (injecting chemo directly into the tumors)
3. Radiation spheres (more localized radiation to the two that are left)
4. Surgery (long shot)
5. Transplant? (our desire, obviously, but still probably not on the table yet)

We will update later when we know more.  Until then, we are going to dance, sing, celebrate - and we invite you to do the same!  Our God has so richly blessed ALL of us. :)

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. ”