Update from our Mayo Clinic trip

mayo-clinic-frontWe made it safely back from the Mayo Clinic this past Wednesday, September 3. My wife and I want to thank each of you who prayed for our family. The Lord really answered prayers.  Although there is no way to convey all that God did for us on this trip, the following are a few things we would like to share with you.

When we made the appointment, the Clinic told us to expect to be there from 3 to 10 days. Many people are done in 3 days and most are done in 5 days. During our first appointment the doctor realized what we already knew – that Sarah’s situation was very complicated and if we wanted to get some real answers it would take longer than they first thought.  We decided that we would just take it day by day and see what the Lord would do.  As the days passed, it became clear that we needed to be there longer.  Although we could have stayed longer with doctors wanting to schedule more appointments, we decided to leave after three weeks.  We felt that most of the important appointments were done and that the other appointments could be done in Rhode Island.  We needed to come home.

Each day brought new tests and doctor appointments.  It really is a miracle that my wife was able to make all of these appointments except for one.   I have no words to tell you how bad Sarah was doing when we left to go to the Clinic.  Each day she was in terrible pain. She had been bed-bound for many months.  The simplest of tasks was very difficult.  Even rolling over in bed would have to be planned and accomplished with much effort and pain.  We give all the praise and honor to God that we were able to make this trip at all – let alone stay there and get to these appointments.

We thank the Lord for everyone who gave financially to allow us to stay in a hotel that was attached to the Clinic.  It really did make a huge difference.  Because the hotel was attached, if she could get into the wheelchair I could wheel her to the appointments through interior corridors.  I was so proud of her as every day I saw her dig down deep within to get from the bed to the wheelchair.  Then she endured much pain in the chair and prayed that our Lord would give her the strength to remain in the chair long enough to complete the day’s appointments.  She is one of the strongest people I have ever met.  I thank God for her bravery and will to get better so she can fulfill her dreams of being a healthy wife, mother and pastor’s wife.

While we were there, she had 12 separate appointments with seven different specialists. Also, she had two appointments with nurse specialists and an all-day appointment with nurses and 15 other people with unexplained chronic pain.  The testing was extensive.  The doctors ordered 80 blood tests, several invasive neurological tests, two biopsies, and a myriad of other tests.  These tests ruled out a lot of horrible diseases and identified ongoing problems.

Although we were happy to be at one of the premier medical facilities in the world, we were on a roller coaster of emotions.  Some doctors were helpful and encouraging while other doctors were not so helpful and discouraging.  The first 10 days there really yielded no helpful results except for ruling certain diseases out.  This was a deep valley for my wife and I to walk through.  While expending so much effort and money to be there, our faith was tested day after day of no more answers than when we arrived.  Even in the depths of this darkness, the Lord provided reminders that He was with us and was watching over us.  I remember one day in particular. We were at our lowest point. We had just walked out of a few doctor appointments that were utterly discouraging.  The devil was succeeding at his dirty deeds of discouragement and distraction. We began to wonder how this was going to work continuing to serve the Lord without any help at all.  We knew we could not go on unless something changed. As I was wheeling her down the hallway, we entered the Landow atrium. It’s a beautiful atrium with a lot of windows and natural light with marble walls, columns and floors. To the side of the room there’s a black grand piano. Often people would sit at the piano playing songs to encourage the folks that walked by.  As I walked through that atrium pushing my wife in the wheelchair, the Lord broke through my busy thoughts to bring my attention to the song that was playing. It was the song “People Need the Lord”. It was as if the Holy Spirit tapped me on the shoulder and reminded me that God is not done with us yet -That people need Him and that He was going to use us to reach them with the Gospel and help them follow Christ.  I brought Sarah’s attention to the song and told her what God was speaking to my heart.  This breathed great life into us as God Himself encouraged us.  From that moment things began to look up. The next day the appointments were more helpful. As we walked through the atrium again that next day someone at the piano was playing the Hymn “How Great Thou Art”.  We serve a wonderful God Who is higher than the highest and yet cares for the lowest of the lowest.  I am thankful He is a personal God Who oversees the affairs of man and so tenderly cares for this simple preacher and his family.

Over the next several days more test results came back with more helpful doctor visits.  After years of wondering, things were starting to come into focus.

We came away from the Mayo Clinic with seven new diagnoses. Of these new diagnoses, three are difficult but have a high success rate of treatment. One is genetic in which her body does not make enough of one of the immunoglobulins that comprise the immune system. One is a painful nerve disease that is treated the same as another diagnosis.  We pray it responds well to this treatment.  Two of her primary diagnoses are not yet well understood and have no cure at this point. However, we did receive a lot of insight and tips to help manage the pain with these two while at the clinic since they are at the forefront of understanding these issues.

One doctor explained the history of medical diagnostics to help us understand where we are in hopes of a cure. He used the example of tuberculosis. When it was discovered in the 1800s it was thought to be an untreatable disease. People were “treated” by putting them into a sanitarium or being told to move to a dry place like Arizona or New Mexico.  Many people died.  Contracting tuberculosis meant a slow but sure death.  As time progressed they realized a bacteria was the culprit. As time progressed further, there was an antibiotic introduced to would help cure tuberculosis.  It is no longer a threat today in America as it once was. This doctor reminded us that with all of our knowledge there are many things we do not know yet about the workings of the human body. Although they know that there are many cases of chronic pain that are serious and severe they do not have a test to tell us the exact cause.  They are working on it all the time and believe eventually they will find a cause and a cure.

The trip home was difficult.  After three weeks of being poked and prodded, being sustained only by your prayers and the grace of God, my wife’s body just gave out.  Also, there was a complication with a biopsy that has not healed yet.  It is still causing difficulties.  Please pray that this heals quickly.  It took us 12 days to make the trip home.  We were hoping to get some family time on the way home and perhaps visit a tourist site. Sarah was just unable to do that. We did not go out of our way at all on the trip home.  The Lord in his goodness did allow us to make a few family memories with opportunities either inside or right next to a few hotels.  For example the children had the hotel pool to themselves a few times. Pool in NY MayoWorld's Largest Boot

 

 

Most days I had to stay close to Sarah to help her and couldn’t leave the hotel.  On one occasion the kids and I slipped away for a few hours while Sarah was resting and saw the “World’s Largest Boot”.

 

 

 

 

 

 

 

 

 

 

 

 

 

There was a large mall that had indoor rides a few miles from one of the hotels.  The kids enjoyed their time there.  But the Highlight of the trip for the kids was that Mommy was able to spend some time with them.  She is the best Mom in the Universe!

Mom and kids at MOA

Best Mom in the Universe!!!

Dad and kids at MOA

I love these kids!!!

One high point of the trip for me was that Sarah was able to get a haircut and manicure.  I really pushed for her to do this as I wanted her to do something “normal” that she hadn’t done in years.  Truthfully, my wife did not have a haircut outside of our home for over 2 years.  I watched a few free explanation videos and did my best to trim it myself a few times as needed over the years.  I praise the Lord she was able to get a real haircut!  I have learned to be ashamed at all of the things I take for granted every day.  God is good to us in so many ways we don’t acknowledge.

So what happens now?
Although the underlying cause of Sarah’s pain is still unknown, the doctors believe that dealing with these new diagnoses will alleviate some of her pain and symptoms.  All of these situations working together are amplifying that underlying root.  We are not yet sure how much help she will receive but we are trusting in the Lord for good results.

The doctors at the clinic made many notes and recommendations for ongoing treatment.  We plan to meet with Sarah’s primary doctor this week to create a treatment plan and add that to the many helpful natural therapies we use already. We will begin treatment on the diagnoses that we understand right away. She needs to meet with three more specialists here at home to look at a few more things. Also, she needs to have some dental work done that she hasn’t been able to do for the past 2 years because of her pain.  With the appointments, treatments, protocols and therapies, we have a lot to do over the next few months.  The doctors said to be patient with the process as there will be ups and downs.  It may take months to see significant changes from the treatments.

Another issue that makes Sarah’s case so difficult to treat is that her symptoms can change very quickly.  One issue can flare up and cause treatment of other areas to be delayed.  A dormant problem can increase suddenly or a new symptom can burst on the scene that complicates things.  For example, on the way home she had severe and unusual lower leg swelling that was painful and immobilizing.  An urgent prayer request is that her body would stabilize long enough for some of these new treatments to take hold and make a difference.

For the first time in years we have some good medical news and see some light at the end of the tunnel.  Thank you so much for your prayers.  We could not have made this journey without you.  We still have a long way to go.  We need your prayers now more than ever.  Our hope is in the Great Physician.  He is the God of life and healing.     Here are a few specific requests:

  • Sarah’s health to improve miraculously
  • for the biopsy complication to heal
  • that her body would respond well to treatments
  • that her pain would reduce quickly
  • finances to cover the extra expenses of the prolonged trip
  • wisdom for her primary doctor
  • wisdom for local specialists
  • strength and provision for my in-laws who moved here last year to help us
  • blessings for the people of Curtis Corner Baptist Church who have encouraged us and gone through this 6 year trial with us
  • wisdom, love and power for me to lead my family, help my precious wife and pastor CCBC effectively
  • that she would be able to attend church services as her health increases
  • to be strengthened with God’s power and to understand the fullness of His love
  • for Sarah to be encouraged daily as she battles her pain
  • for our family to live in the joy, peace and comfort of the Holy Ghost

Thank you so much for your love, prayers and encouragement!