Saturday, December 27, 2014

A Time to Celebrate

Much has happened this year to have our family take pause and notice just how precious life is, but I am sure we are not the only ones.  What in your life has lead you to pause a moment and take note?


Even though this was our most difficult year as a family, it was a year that showed us God's loving kindness through so many people.  We are all still processing our loss as we move forward in life without Ken.  Many unexpected things have needed tending to. Many undone projects still need addressed.  I will admit that nothing has gone as planned, if you can actually plan out such a time as this.  Then the holidays came quickly as we passed by Ken's (would be) 45th birthday, Thanksgiving and now Christmas. 

Even though it is a time of readjustment, no matter what has gone on in our lives  - Christmas is always a time to pause and take note of the promises of God.  It is always a time to celebrate! 


  With that said, we hope you had a Merry Christmas!

Friday, October 31, 2014

Life Goes On

Today is a day in which our culture celebrates the myths and fears that surround death.  Some of the cultural traditions are fun and some are down-right scary.  Although we can claim to have had some fun on All Hallows' Eve, our family grew to be fairly indifferent to the celebrations going on around us on this day. In fact, it never crossed my mind to purchase candy this year so we are sitting at home with the porch lights OFF!

On the eve of All Saints Day, when many are celebrating the uncertainty that surrounds death, I thought I would write a little about the certainty that comes to those who have faithfully departed in Christ.  About a month ago we said "see you later" to my life-long friend and husband of twenty-five years.  Because of the long term nature of Ken's health problems our family had many opportunities to face reality and to prepare for closure.  We actually considered that part of his illness to be a blessing through the years.

 
Ken had survived liver cancer in 2006 by receiving a life-saving liver transplant.  Throughout 2014 his transplanted liver had been slowly failing and we knew that it was a matter of time before it had completely failed.  Even though Ken was diagnosed with a rare liver disease in 1989 he lived a life much better than the doctors ever expected.  Because of this diagnosis we learned to live a life that kept the truly important things in the forefront.  We learned to say the things that were really important to each other and to our children.  Ken wrote each child a letter before his passing yet there was nothing written that wasn't said at some time.   He did the same for me and I now have in writing letters that highlighted the years of spoken words.

About a week before Ken died he asked me to have our children, parents and pastors meet with him at the hospital.  He had struggled that day with a lot of pain and wanted this opportunity to speak some final words to his loved ones while his mind was clear. He spoke with us all as a group assuring us of his conviction and faith in Jesus Christ. He spoke individually to each of us assuring us of his personal love.   We then ended the night with bible readings and a service to accommodate the dying. 


As a final act of love and closure for us all,  Ken also planned the entire funeral.   He typed out the worship service,  he chose all of the Bible readings and all of the hymns. I think it was so well done it was ready for printing once the church secretary had added in the day of death along with the name of the Pastor officiating the service.  The funeral service ended with this verse from 2 Timothy 4:7 -
 
"I have fought the good fight.   I have finished the race.   I have kept the faith."  

As he planned the service with a specific message in mind,  this verse alone left us all with a final message.   Although life goes on, we were being encouraged to stay focused on the finish line of this earthly race so that life will go on eternally for us all, like it did for him.

Saturday, September 27, 2014

A Time for Everything



Thank you, Lord, for introducing me to Ken.  Because of him I have had the opportunity to live an amazing life! He was my best friend of my youth. We attended the same high school, got married, finished college together and then lived in a variety of wonderful
places in IL, MO, MI, TX and WI.

Ken was lead into the ministry which took us to the other side of the world and back.  He served churches in Almaty, Kazakstan; Townsend, WI; 
Washburn, IL and LaRose, IL. 

We were blessed with 25 years of marriage and three great children.  He imparted wisdom and truth unto them and through them, his legacy will definitely live on! 

This week we said "See you later" to a wonderful husband, father, pastor, and friend.  Words cannot express the impact that his knowledge and wisdom has had on so many people all across the world.  
He will be missed but never forgotten.  

We are comforted knowing that his faith was in his Lord and Savior, Jesus Christ.  We are comforted knowing that he fought the good fight, finished the race, and kept the faith.  His body has been healed and he lives eternally in God's presence. 

"For everything there is a season, and a time for every matter under heaven: 
time to be born, and a time to die. . ."


Wednesday, September 24, 2014

A Time for Comfort

Do you know people who must have all of the details before making a decision?  It sure can be annoying when you are waiting for THAT person to decide so you can get on with whatever you were deciding about - especially if it is Friday night and you are trying to decide what to do, where to eat or what movie to watch!

Well, I am normally that kind of person - one who collects information so I can make an informed decision.  This makes total sense to me and many others with a similar personality, but I can also admit to making several VERY naive decisions in my life.  I did not have ALL of the information before getting married, but I did it anyway.  I did not have ALL of the information before having children, but had them anyway.


This week I made another naive decision.  I had a general idea of what hospice was but found there was not time to gather ALL of the information.  We knew that Ken's health was failing fast, that he was not going to be able to fight for a liver transplant any longer so we decided to learn more about hospice services.  In less than two days, I met with three different hospice representatives.  I learned that hospice services can be offered in the hospital, in a nursing home, in a special hospice home or in your own home.  I naively chose our own home.  We home school, so why not do hospice at home too?

I have always said that home school is not for everyone.  I can honestly say the same about hospice care in the home.  It is not for everyone.   Shortly after we got home from the hospital, a hospice nurse met us at our home to make sure we had everything we needed.  Ken was very tired and went to bed.  He got up a few times in the night but by the next morning he was unable to get up any more.  I was overwhelmed with his care wondering if this naive decision was a very good one.  I did not have ALL of the information but am doing it anyway.

Just like getting married or having children, I have found that hospice care in the home is very similar.  Marriage and giving birth were definitely overwhelming at some point.  Both being married and raising children involved a learning process throughout each stage.  There is also no way to be married or to raise children without selfless acts of love and service to another person.   The past two days have been very difficult but our whole family is learning as we go.  The process of passing has begun and everyone in our family is finding ways to serve, love and care for Ken. We will learn through each stage, for however long that we need to learn.


We already have so many people to thank for being there for us, for setting up meals, for listening, for encouraging us and for praying. We appreciate it all very much!


Monday, September 22, 2014

The Greatest Tool of All

Although my husband is a pastor, I am not claiming that what you read next will be the greatest analogy or that I will have the best theological explanation for what I am about to say but it was on my mind to open up that tool box and show you a little of what was inside.



We are under a lot of stress right now as we think about all that life is and all that life is not.  And there are tools in our toolbox that truly help us get through each and every day.  These tools come in all shapes and sizes but have helped us live a life of purpose and a life of peace.  I believe many of the tools are meant to be shared and talked about.  That is one of the purposes of this blog - to write about ALL THINGS IN LIFE as we are LIVING them, to talk about the tools that we have been given and been using, hoping that it helps you live the life you were meant to live!

Most of the time we have a smile and a sense of peace about all that we have been through in this life and all that we must still go through.  Yet there are times, like right now, when it feels like the burden is too heavy to carry and the pain is too much to bear.  That's when we open up our tool box and use what is in there to get us through. 


The greatest tool of all in our "tool box of life" is God's Word which was a tool given to us as a gift.  I was very blessed to have found this tool in my tool box because my parents placed it there when they placed me in the hand's of God through Holy Baptism.  That gift was shared with Ken many years later and he too began to access this tool in his daily life. 

We had to learn how to use this tool but as we learned to use it we grew as friends, we grew in marriage and we grew in life with this being the greatest tool of all!  This tool is the one that brings us comfort when we are stressed, that breaks us when we are needing fixed and that fixes us when we are broken.  It is also capable of making all of the adjustments necessary to get us back on course and point us in the right direction if we were to get lost.  It is the foundational tool through which all other tools are made.


It is our prayer that God's Word is in your life too -  serving you, fixing you and comforting you as you experience ALL THINGS IN your LIFE.

Saturday, September 20, 2014

How Do You Do It?

After spending the past two months at home, Ken was readmitted to the hospital.  Due to the concerns and symptoms it was decided that going to a local hospital in Peoria was best for Ken and our family.  Our goal is to get several things back under control so that he can return home soon.

Our family has been through some good times and some "not so good" times, especially during the past eight years.  A question that I have been asked often this week is "How do you do it?"  or put another way, "How do you live with all of this stress and still smile?"


 In reality, we have been married 25 years . . . 


. . . for better and for worse and for more worse!
 


We have talented kids that appear to be well adjusted!


Yet this week we face the reality that Ken's chronic illness is really a terminal situation.  So, yes, there is a lot of stress!  Yes, there are decisions to be made.  BUT yes, thanks to God, there are tools in our "toolbox of life" that have helped us all cope with the stress.  Next time I will show you what is in our tool box!






Friday, September 5, 2014

The Mystery is SOMEWHAT Reavealed!

In an earlier post, I shared that our son was invited to participate in a "Mystery Mission Trip."  We have taught our kids that it is important to serve others so it was not a surprise that our son was excited about going on a trip with his track coach even though he did not know WHERE he was going or WHO he was going with!

The leaders of this trip work through Youth For Christ and none of the youth knew where they would be traveling to.  They just knew their group would be going SOMEWHERE to do SOMETHING. The YFC leaders wanted to instill upon this group that serving is more about the people than the place.  


Our son joined this smaller group from a town nearby.  They headed south to meet up with a couple of other youth groups from Central Illinois. This was the first mystery revealed ~ several groups would work together for the entire week SOMEWHERE. 


I asked our son where they went for the week and as it turns out - he still has no idea where they went!  He just knows they went SOMEWHERE down south and did SOMEWORK.  So, here he is with a shovel in his hand.  I would say this looks like evidence of hard work!


Here he is with a rake.  
"How do we get him to do this at home?"


In addition to working, there was a historical lesson based upon where the group was for that day.  These lessons took place in museums, parks and homes.  It looks like they also had SOMEFUN!




We did hear many stories from our son and I SOMEWHAT figured out where they went by visiting the Metamora Campus Life Facebook Page.  There are several hundred pictures posted here by Christian Papach, one of the leaders who happens to be an outstanding photographer.  I am very thankful to have a better understanding of the trip through Christian's pictures and appreciate his permission to post a few here. 
 
It seems that many friendships were formed and many things were learned as these youth experienced history lessons, life lessons, teamwork and the blessing of serving others.  Perhaps SOMEDAY we will find out exactly where they went!

Thursday, August 28, 2014

A Third Chance at Life?


When this blog was started earlier this year, I stated that it would include a variety of articles fitting the theme "All Things In Life".  A variety of topics will be coming in the near future, but today I will give another update on how Ken has been doing.

I wrote last month about Ken's "second chance at life" in two parts: Part One and Part Two because his first liver transplant in 2006 took place over the course of two days.  Now he waits for a second transplant which we have referred to as a "third chance at life".  Based on all that has happened during the past eight years, this really could be considered his fifth or sixth chance at life but then it would sound like we were talking about the neighborhood alley cat!



A second transplant is something that we never expected to be an option.  The reason it is an option now is because Ken's liver is failing from a liver disease known as primary sclerosing cholangitis (PSC).  The first transplant was necessary because the PSC had advanced into a form of liver cancer that was detected very early.  This time the PSC has lead to end stage liver disease.  The best way to describe end stage liver disease is to imagine taking one of these every day . . .
 


I have never known anyone to be told multiple times that they did not have long to live but now I walk this path once again with my life-long friend and husband of 25 years.  What does one do when they are told such news?  Do they really feel like going sky diving or Rocky Mountain climbing?  The first time Ken was told that he would not live long without a liver transplant, he was 36 years old and looked very healthy.  The diagnosis did not line up with any symptoms because there were none.  Although he could have gone, there was no time for sky diving when you are in need of cancer treatments.  Very quickly you do not feel like doing anything.

 
Ken is now in need of a second liver transplant because his liver has been failing all year.  He has been in the hospital more than home in 2014, but right now he has been home for about five weeks without a reason to go back to the hospital.  We have learned to manage many things at home and do receive weekly visits from a home health nurse.  Ken is very limited on how long he can be on his feet so falling from the sky is not an option.  However, we were told by a local doctor that he has never seen anyone with a liver this bad be able to be upright at all.  That perspective helps us appreciate the littlest of things.

A failing liver brings on many daily challenges so we must take each day as it comes.  We really do not know what the future will bring.  Like we told our children when they were 6, 9 and 11, "Daddy will either receive another chance at life, or he will receive eternal life."  Now they are 14, 18 and 20 and while the circumstances may seem a little different the message is still the same.

 

Thursday, July 31, 2014

A Second Chance at Life: Part 2 - "The Surgery"

As I recall the events that lead up to the liver transplant in 2006, I am amazed at how slowly the day progressed.  Prior to that day I imagined a phone call interrupting the normal flow of family life, followed by a mad rush out of the house into the van.  I could see us flying down the country roads onto the highway making great time as we drove across the state of Wisconsin, only to be stopped briefly by an empathetic state trooper who so kindly gave us a police escort the rest of the way. I expected a quick good-bye at the hospital as they rushed Ken off to surgery to receive the transplant.



Instead, we received the first call from the transplant coordinator at 3am, followed by a second call at 6am on July 30th.  We knew that Ken was in the top five on the transplant list so we already had most of our bags packed for the call, much like we did when expecting our children to be born.  Even though most things were ready to go we did not go back to bed after receiving the first call.  Once we got confirmation to start driving to the hospital we got in the van and headed south.
 
It was a rainy morning so logic set in and I decided to drive the speed limit because it made no sense to become an organ donor on the way to receive a transplant!  We made it to Oshkosh by 8am and the EAA Airventure traffic on the road was minimal, so we passed by the thousands of campers with no problem.

We arrived to the hospital by 10am.  We were met there by several family members and friends.  Then we hurried up and waited.  Ken was actually the fifth transplant of the day so he was taken at 5pm into the surgery.  We waited in the surgical family room all night.  Around 2 am on July 31, I received a phone call from the operating room that the transplant had just taken place!  So this is the day that actually marks the eighth year anniversary of Ken's first liver transplant.

Wednesday, July 30, 2014

A Second Chance at Life: Part 1 - "The Call"

The next two days represent an unusual anniversary for Ken but I decided to share this story in memory of the events that took place eight years ago.

Ken was diagnosed with a liver disease  known as primary sclerosing cholangitis in the Spring of 1989.  This diagnosis came about a year after he had graduated from high school and just weeks before we got married.
 

Nearly 17 years after the original diagnosis, Ken was then diagnosed with cholangiocarcinoma - a type of liver cancer in the biliary tree.  About 10-15% of people diagnosed with PSC will also be diagnosed with bile duct cancer, which is normally fatal within six months.

In the 1990's, Mayo Clinic developed a protocol that would open the door for liver transplantation for some people diagnosed with cholangiocarcinoma.  Otherwise, this door was not an option for this aggressive type of cancer.  Ken began the "Mayo Protocol" at the beginning of 2006.  He had to receive aggressive radiation treatments as well as oral chemotherapy for about two months.  He then underwent exploratory surgery to check for metastases before being placed on the liver transplant list.  This surgery showed no spread of the liver cancer, but did reveal a type of kidney cancer.  (A story for another day.) Ken was officially placed on the list and continued to receive chemotherapy while waiting for a transplant.  According to the protocol, the liver transplant needed to occur by the end of the sixth month of the protocol.  Ken was granted exception points for his MELD score in order to increase his chance of receiving a transplant in time.

On the last day of the six month of this protocol, we received a phone call from Ken's transplant coordinator that a liver may be available for him.  This call came at 3am but we were asked to wait for another call before actually driving to the hospital.  

Interestingly, we had prayed that Ken NOT receive a call for the transplant on this weekend.  We had a guest from out of state so we were hoping to enjoy the weekend visiting with her.  We also did not want to be caught up in the traffic from the EAA Fly-In in Oshkosh.  By 6am we had received a second phone call telling us to drive the four hours to Madison for a probable transplant.  

As it turned out, it was a huge blessing to have a guest at this time because we were able to leave the kids at home.  Ken said good-bye to each one knowing that he may not see them until after the transplant.  They were 12, 11 and 7 years old on this day.  



We did not know anything about the donor for Ken's first transplant for nearly two years.  In 2008 we did receive a letter from a wife who had lost her husband tragically in a motorcycle accident on July 30, 2006.  On this day we remember the gift that this man gave to our family by being an organ donor. Because of his gift, Ken received a second chance at life.


Tuesday, July 29, 2014

Are You Having Safe Fun?


Ken officially spent the first half of July in the hospital.  We expected the last trip back to Madison to be a short one designed to tweak his electrolyte imbalance, but it turned into a week long stay.  We were then home a handful of days before needing to go to a local hospital, which resulted in another week long stay away from home.  As we hung out at the UW Transplant Unit during the 4th of July weekend, we could not help but notice the greatly increased helicopter activity! 
 



While we do not know the reasons for all of the helicopter landings, we do know that a lot of people were NOT having safe fun.  We also know that there is a strong correlation between the increased travel to Wisconsin in the summer and the number of transplants that occur during this time. 


As I finished up this post we heard another helicopter landing on the pad nearby.  That makes it more than a dozen landings so far today.  We sure hope you all are having SAFE FUN this summer!

Saturday, June 28, 2014

This Mystery Needs No Solving!

Our son was invited to participate in a "Mystery Mission" trip.  This means that the youth attending the trip had no idea where they were going or what they would be doing!  They were simply asked if they were willing to give a week of their time to serve.  If so, then they were given a packing list and the dates they'd be gone.  As you can see, he packed his "guns"!


Not only did our son not know where he was going, he didn't really know who he was going with.   We look forward to hearing all of his stories very soon and I look forward to sharing more about this "mystery" trip when he returns.   For now, I ask that you pray for the safety of the group as they finish their week of service unto others and as they travel home.

Saturday, June 21, 2014

Thanking a Community

I recently shared some of the details of Ken's journey from the diagnoses of PSC to surviving cancer to how he is doing now.  There have been many ups and downs in this journey but our perspective is that God is using these things to teach us life-lessons and to mold us for His purpose.  Sometimes we talk to our kids about these life-lessons and sometimes these life-lessons just hit us and leave us speechless.


A recent life-lesson is related to the role of community in our lives.  Think about these examples of community:  church, bowling league, Weight Watchers, the local bar, Facebook, your home town.  I firmly believe the communities that we participate in can have the power to destroy our lives or have the power to be a blessing in our lives.

The power of community was recently demonstrated on a huge level in our lives a couple of weeks ago and it was a blessing!   Our church decided to host a fish fry and traditional auction in honor of their pastor and as a way to help offset the travel and medical costs.  Their effort was joined by many from surrounding churches as well as the general community.  Many people attended which tells me a lot of people really like beer-battered fish or a lot of people really care.  I believe it is mostly the latter which was very humbling for our family.


We would like to personally thank everyone involved but I believe the outpouring of love from this community has gone beyond any list of names that we could have been given.  Please know that we truly appreciate all that was done! 

The care and compassion spoke volumes to Ken as he now knows we are not alone in this journey.  This was a huge blessing!  The care and compassion also spoke volumes to our children.  I know that because of THIS life-lesson they will duplicate the efforts ten-fold throughout their lives as they will seek to pay forward this example in the years to come!

Wednesday, June 18, 2014

Journey from Transplant to Transplant

I wrote most of this post while on the transplant unit since Ken was readmitted earlier this week.  He was released to go home today so I now finish this in the comfort of our home! 

I first blogged here about when this journey started and here about the past six months.  This will be the one time that I will fill in the gaps on the history of Ken's illness.  It's a history that has been with us for the past 25 years but we have not let it stop us from living out our purpose!  
 

I only share this to answer any questions that people may have, to guide our prayers and to hopefully help others who struggle in some way.   Perhaps it will help some to know they are not alone in their struggles.  Maybe it will help others to know that things in their lives are not really all that bad.  I have been reminded often that "it is not what happens to us in life that matters but how we choose to respond that makes the difference."

1985 - 1987 If Ken where to tell the story he would probably say it started sometime in high school. He was an outstanding track and cross country runner but had experienced some unexplained fatigue from time to time.  A blood test revealed elevated liver enzymes which could have been due to a muscle disorder or a liver problem.   Due to his age and competitive running, the doctors ran a battery of tests that ruled out a muscle disorder. The symptoms seemed to have cleared up so no additional tests were ordered. Ken graduated high school in 1987 and then proceeded to attend basic training and tech school for the Air National Guard.

1987 - 1989 After tech school,  Ken returned to the central Illinois area to work.  He started college,  joined the indoor track team,  met his monthly obligation with the Peoria Air National Guard and planned to get married at the end of his freshman year.   Symptoms surfaced in the Spring of 1989 which lead to a diagnosis of ulcerative colitis (a colon disease) and primary sclerosing cholangitis (a liver disease).  Even though the prognosis was not great we still got married in May.

July 1989 Continued weight loss and a high fever landed Ken in an ER, followed by a surgery to remove his gall bladder.  This surgery confirmed the diagnosis of PSC and a recommendation was made to get a second opinion at Mayo Clinic.

October 1989 While both of us were full time students,  we were able to take a week off of school for testing at Mayo Clinic in Rochester, MN.  Both autoimmune diseases were confirmed to be present.  There were no known cures for either disease and very few treatment options at the time.

1990 - April 1995 Ken's liver enzyme numbers had returned to normal. The main struggle with his health at this time was due to flare-ups from the ulcerative colitis.  Long term use of steroids became ineffective and the symptoms could no longer be managed with medications.

April 1995 Six years after the diagnosis of ulcerative colitis and 6 months after the birth of our daughter, Ken had to have surgery to remove the entire colon. He was a student at Concordia Seminary in St Louis and had to take six months off of school in order to have three major surgeries to remove the colon and to create an internal pouch. 




May 1999 For most of the ten years following the initial diagnosis of PSC, Ken's liver enzymes remained within normal limits. In May 1999, Ken hit a point in which he was not feeling well and blood tests revealed elevated liver enzymes again. We were living in Almaty, Kazakhstan at the time and it was determined that we should return to the United States in order to have the status of the liver disease re-evaluated.  Since PSC is so unpredictable it was recommended that we remain living in the US in the event that Ken would need additional medical attention.  Months after returning to the US, the liver enzymes returned to normal. 


October 2004  We had moved to the state of Wisconsin ealier in the year so Ken needed to find a new liver specialist to monitor his liver enzymes although they had been close to normal for the previous four years.  Following this initial visit of routine blood tests and an MRI, Ken's new doctor from Green Bay referred him to UW Madison because he had discovered two masses in his liver.  Biopsies revealed that these masses were not cancer.   However,  the liver specialist indicated that it was not a matter of IF but WHEN this scar tissue from the PSC would lead to cancer.   Ken was then scheduled for a routine liver biopsy every three months until cancer was detected.

December 2004, April 2005, July 2005 Three additional liver biopsies were all considered benign but there appeared to be a progression toward the development of abnormal cells.

October 2005 Ken was diagnosed with cholangiocarcinoma - a type of bile duct cancer.  It was recommended that he participate in the "Mayo Protocol" which involved radiation treatments, chemotherapy, exploratory surgery and liver transplantation as the only way to survive this type of cancer.




January 2006 Ken started radiation treatments and chemotherapy under the direction of the UW Madison Liver Transplant team.


March 2006 Exploratory surgery showed that a spot on his kidney was renal cell carcinoma so half of that kidney had to be removed during this surgery.  The finding of kidney cancer was unexpected and unrelated to the liver cancer.  This surgery also confirmed that the bile duct cancer had not spread to the lymph nodes so Ken could remain on the liver transplant list!

July 31, 2006 Ken received the life-saving liver transplant at UW Hospital in Madison from a man who died in a motorcycle accident.

February 2007 Following a very rough recovery time, Ken eventually returned to work as the head pastor of the church he had been serving in Wisconsin.




August - December 2007 Unexplained, yet severe pain lead to hospitalization in December.  Many tests were done looking for a cause of the severe abdominal pain but nothing could be found.

January 2008 A massive bleeding ulcer was finally discovered.  Later it was determined that the ulcer was a result of the intense radiation treatments.  It was recommended that Ken be evaluated for surgery to remove the ulcer.  Surgery was scheduled and then cancelled because it was unlikely that Ken would survive the surgery.  He was then referred to specialists to continue managing the severe pain.

July 2008 Pain management options reached a dangerous and potentially lethal level so surgery was rescheduled to remove the massive ulcer.  It was determined that the risks of treating the pain were greater than the risk of dying in surgery.  This surgery was incredibly difficult and lead to the accidental cutting of a duct in the pancreas.  This lead to a series of complications that represented the beginning of an even rougher road.  The pancreatic leak lead to a drain tube - which lead to a fistulla - which lead to many serious pancreatic infections, the placement of a central line for nutrition, and hundreds of days in the hospital over the next two years.


January 2010 Surgery was scheduled to try to repair the pancreatic leak.  This surgery was cancelled because the surgeon believed that Ken would not survive the surgery due to the history of severe infections.

July 2010 Surgery to repair the pancreatic leak was rescheduled by a different surgeon.  This surgery was successful and over time the number of pancreatic infections decreased from monthly to just a few per year.

December 2011 - December 2013  Ken averaged about six hospitalizations each of these years but still made improvements in the quality of his daily life.  He was able to pursue hobbies, help with homeschooling and eventually serve as a guest preacher and Bible study teacher.  In February 2013, Ken was called to serve as a pastor on a part-time basis in Central Illinois so our family made the move from Wisconsin back to Illinois.

January 2014 - June 2014  Ken began to have one infection after another which required multiple hospitalizations.  So far he has been in the hospital in Madison more than 125 days this year.  We know that his transplanted liver is failing from an aggressive re-occurrence of PSC.  He was placed on the liver transplant list and is currently waiting for a second liver transplant.  

As I finish this, I'm thinking this is still a brief overview although it does not look like one!  Many details and stories are left out but I figure if you read this far it is because you wanted to know the story. I still hope that sharing this helps in some way.  When I write more in the future, I pray that the real help comes through the life lessons learned and the encouragement that we can offer to those in any circumstance.

As we continue down this path we really do know the end of this story.  It is the same ending for every one in our family.  Our prayer for you is that you too know the end of your story!

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.  Romans 8:38-39 





Sunday, June 15, 2014

Hapy Father's Day

Before giving an update I decided to post a picture that is bound to make you all smile.  Anytime I am in need of a smile, I open up a file of favorite photos and this one get's me one every time.  



These are our three PK's - AKA "little angels".  PK is short for THE Pastor's Kids.  I am sure you all know some PK's and I bet they are all "little angels" just like ours!

All kidding aside, I wanted to post something for Father's Day.  I know this day can be bitter-sweet for many people, fathers and children alike.  I think we all have experienced a time where our earthly fathers have let us down as well as a time that makes us proud to call him "dad".  I'm also sure there are many fathers that feel like they could have done more for their children at different phases in their lives and some who have sacrificed much for the success of their family.  Some have great earthly fathers while others do not even know who their father is.  Some have great memories with their dad while others have no memories at all.  I am thankful that our children have had mostly great memories with their dad.  I often remind them that despite the fact that he has had so many health problems, they have more great moments with their dad than most have in a lifetime.




I know there are so many situations and scenarios that could describe the modern day father-child relationship.  No matter the father or the memory - one great thing to remember on a day like this is that we all have a perfect Father in heaven who will not let us down, who will always be there and who sacrificed it all for each of us to live eternally with Him! 



I admit that we could use a smile on this Father's Day.  A week ago, Ken was re-admitted to the hospital so we were hoping that he would be able to be home for Father's Day.  We actually made it home Friday night but he got very ill this morning so we had to return to the hospital.  The doctors are rechecking all of the usual things and he is now resting comfortably in his room.  It was not the Father's Day that was planned but God willing, we know that we can pick another day and make it just as special!