Pretesting

Merry Christmas!! 

On Tuesday, December 22 we headed to Chicago for Keith's pretesting to make sure Keith is healthy enough to go through with the transplant.
  Pulmonary Function Test
  2D Echo
  Vein check
  EKG
  Blood draw - 17 viles!!
All the tests were quick and painless. On Wednesday, December 23 we met with Dr. Burt and his nurse Kate, at noon.  Dr. Burt asked Keith a bunch of routine questions and then went over the risks of the transplant. He then asked if we had any questions and was gone.  (About 5 minutes with the good doctor.)

Nurse Kate went over all the details. We asked if it was a possibility of doing the neupogen shots at home instead of staying 1 1/2 weeks at the hotel (we heard that a few people were able to do this, but also realize they live close to Chicago). The answer was "no".  In case Keith would get sick, he needs to be close to the hospital so that he can be taken care of quickly and by a staff that knows how to treat his situation.  Oh well, we tried. They will call us with the results of all the tests next week.  If all his tests come back normal, then we will head back to Chicago January 4 to begin chemo.  More on that later.

Jaden and Josiah came along with us on this trip.  We thought it would be good if the 2 youngest boys got a feel for where Keith will be and a taste of the big city!  Josiah loved it!  He was impressed with all aspects, except for the homeless on the street, it broke his heart.  Jaden was ready to leave the city the minute we entered...just like his dad.  But Jaden led the way to each appointment.  He had the whole -  hospital - Dr.'s office - hotel - parking garage, map, figured out. He has a great inner compass!  Which I was thrilled to learn. Mine has been off since birth!  So we followed Jaden.

     
Patiently waiting for dad during appointments.
  

On Tuesday, after all the appointments, we ventured out to the Water Tower Place (7 floors of shopping!) which is 3 blocks from our hotel.  We heard they had a Lego Store.  The sidewalks were busy, the store was busier!  Lots of Holiday shoppers!  What an experience. 

The next morning, Keith and I were both up by 5:45am.  My usual time to get rolling in the morning. But it was really only 4:45am Chicago time, so we had to wait for the hotel staff to wake up and make breakfast.  By 8:30am our time, Keith and I were both bored to tears!  Neither one of us watch TV, ever. Keith was wondering where the cattle auction channel was.  We don't have cable at home, but he had seen my dad watching it years ago.  It is going to be a loooooong 2 weeks in a hotel together.  A true test on our marriage is what I'm afraid of.  I don't think I could watch 30 seconds of auctioning cattle! At 10am the boys and I went to check out the Apple Store, Nike Store and The Disney Store, all within a few blocks of our hotel.

On the way home we drove directly into a rainbow for about 15 minutes.  By the time I figured out what God was so clearly and beautifully telling me, it faded away. GREAT IS THY FAITHFULNESS!!!  He had faithfully guided us to and from Chicago, we made it to all the appointments, and each test went flawlessly!

Thank you all for your constant love and prayers.  Another big hurdle was accomplished this week and we could not have made it one step of the way without each one of you cheering us on!

With joy and thanksgiving

It is with GREAT JOY that we announce our goal of $125,000.00 has been raised for Keith's Stem Cell transplant!!!  So many people prayed, believed, and donated, and it happened. In one month. What an awesome God we serve!

Looking back at all the emotions we had over the last several months....what a ride!  From hearing the diagnosis, the hope of a transplant, the relief of getting into the transplant trial, the defeat of denial by insurance 3 times, the humility of fund raising, to the thrill of meeting our goal. Whew! We could feel God leading us the whole way, He is so faithful.  It's almost crazy to know that He is that close to us all the time.

We could not have met that goal without the help of so many.  Family, friends, our Church family, our deacons, co-workers, neighbors, and even strangers worked so hard to make this all happen.  We are so blessed to be living in West Michigan! How wonderful to feel the love and support of the entire community.

There are still a few fund raisers out there that will help with additional medical expenses that arise along the way, as well as travelling costs, and the fact that Keith is self-employed and will not be working for several months. *Please Note:  The Lasagna Dinner and Pie Auction scheduled for this Saturday, Nov. 21, has been cancelled.*

On December 22-23, we will be going to Northwestern Hospital in Chicago for pretesting.  They need to make sure that Keith is healthy enough to go through with the transplant. On Jan. 5-16, we head back to Chicago for chemo and harvesting Keith's stem cells.  Then on Feb. 3-21, more chemo and this is also when Keith will get his stem cells back.  So exciting to finally have dates on the calendar!  Now to figure out the kids and grandmas schedule. :)

We are so humbled and thankful for everyone's prayers, acts of kindness, and generosity. I have hugged more people in the last 2 months than I have hugged in my entire life.  And saying "thank you" never seems like enough.  So please know that we are truly grateful for each of you!!

FUNdraising

So many good times were had at our fund raising events! We are overwhelmed by the generosity of this community!

Total raised at these events was around $30,000.00!!!

Norwex Products fund raiser October 26 

Community Restaurant Event - October 29 - around 350 people served

Johnny Cash - November 6 - 170 tickets sold

Skeet Shoot November 7 - 60 registered participants

Pizza fundraiser November 7 - 270 pizzas sold

Pedaling for Pledges - Chad Glass rode his bike 150+ miles 

Please join me in giving thanks for these tremendous acts of kindness!!

Upcoming Fundraisers

We have been blown away by everyone's support these last few weeks!  As soon as I posted that we were fundraising for the transplant, my facebook messenger lit up with people wanting to help!  We have been amazed at the generosity of our family, friends, church, and community!  The "family of God" remains strong!

 Here are a few of the flyers of our upcoming fundraisers.  Getting so exciting!!!

And also our GoFundMe link: www.gofundme.com/py55rxgk

Remember:  Community Restaurant accepts CASH ONLY.

Pumpkins....and done!

We grow pumpkins and gourds as a family.  And it is hard work!  But it is so fun to do together, (at least I think so!)  Each night after supper we would pick pumpkins til about 8pm. Then we would drop Jaden and Josiah off at home to do homework and get to bed.  Then Jake, Luke, Keith, and I would go and stock our 4 stands.  We were usually back home by 9 or 9:30pm.

Keith drove the skid steer through the field while the rest of us picked the pumpkins and put them in these boxes. So thankful Keith was still able to be out with us!

Then the boxes were loaded onto the trailer to bring to our stands.

Our stand at home. We pulled all our wagons home now, so this is our only stand still open.

    

 Our pumpkins were not as good this year; we didn't have as many and they were smaller in size.  But we still had a great year!  And are so thankful for all our buyers!

Fundraising!

Well, it's official, we will be fundraising for Keith's Stem Cell transplant.  We received our 3rd and final denial letter from our insurance.  But our hope and savior is not the insurance company! Our hope is in our Lord, and our savior is His son, Jesus Christ!!!  So we move forward in faith.
Here is our fund raising letter.  Feel free to share it or pass it on!

Dear family and friends,

I am writing on behalf of Keith, my sweet husband and wonderful father to our 4 boys: Jacob 19, Lucas 17, Jaden 14, and Josiah 10. We enjoy a busy family life, I work full time at Family Research Council (FRC), and Keith works hard as a farmer raising hay, straw, rye, pumpkins, and he also makes bead board in his shop which he sells to the local lumber yards. He also tackles a lot of the stuff at home like laundry, cooking, and running kids here and there. Recently, we noticed that a lot of his work and everyday life was becoming more and more difficult for him to do.

On April 7, 2015, Keith was diagnosed with MS, a neurological disorder that affects the central nervous system and disrupts the communication between the brain and the rest of the body. Unfortunately Keith's MS is progressing quickly and we have seen little success from the medication he is currently taking. Since diagnosis, he has been battling double vision, numbness and tingling in his feet, legs, and arms, fatigue, brain fog, nausea, and a lot of weakness all over his body. It's been hard to watch someone we love be over taken with this awful disease.

We are blessed that Keith has been accepted into Dr. Richard K. Burt's Hematopoietic Stem Cell Transplantation (HSCT), where high dose chemotherapy is used in conjunction with one's own stem cells to "reboot" the immune system. HSCT erases the immune system's memory and basically hits the "reset button". This stops the underlying MS disease activity and allows the body a chance to repair itself. This will take place at Northwestern Memorial Hospital in Chicago and can take up to 2 months time.

Unfortunately our insurance will not cover HSCT because it is still labeled as a trial and not FDA approved. We will need to raise $125,000.00 before they will begin the transplant. Keith will need to be off his medication for 3 months prior to transplant. So we stepped out in faith and Keith went off his medicine on October 2, and we are hopeful to start the transplant process in the beginning of 2016!

To help raise these funds, a friend has started a GoFundMe page in Keith's honor: www.gofundme.com/py55rxgk  You can also send checks to our Church:

Faith United Reformed Church

Memo: Keith Nienhuis
8270 120th Ave

West Olive, MI  49460

For tax deductible donations, write checks to Faith URC with Benevolent Fund in the memo line.

As we travel this road, we covet your prayers, words of encouragement, love, and support. We are so thankful to be part of a loving family, church, and community.

"Now unto Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever!-Amen."

Nichole Nienhuis

616-796-5949
nln@frc.org

Let us fix our eyes on Jesus. Hebrews 12:2

Focus...
Don't lose hope...
It is so easy to become distracted, depressed, and anxious, when we lose sight of heaven. But if we didn't have trials on this journey, we wouldn't long to get home. We would be content to live on this sinful earth.
           

Last week we received a phone call from our case nurse, Carrie, that we were once again denied coverage for Keith's stem cell transplant. ugh....each time is like another punch in the gut!
I talked to Dr. Burt's nurse, Kate, and she is sending another appeal letter this week. If the peer to peer conversation between Dr. Burt and our insurance company was denied, I have little hope that this next appeal letter will do any good. But our God is greater!
Since it sounds like our insurance is not going to approve, we have started to discuss fund-raising options. This is hard. We much rather work for what we need. But, there is no way around it, we need help. As I see Keith losing strength each week, it is becoming more important that we get started on this!  We can't let days/weeks go by just waiting for answers any more. And, unfortunately, we need to have $125,000.00 before they will begin pretesting.
So that is where we are...staring at a blank screen...where do we start?

I will praise You in this storm....

I heard from our Case Nurse (Carrie) with our insurance company on Tuesday, August 4.  She gave me the status on where things were, and what the hold up was.  It had already been 2 weeks more than what it normally takes to get an approval from an insurance company.
Carrie told me that the insurance company forwarded Keith's paperwork to a doctor for review.  This doctor then lets the insurance company know if they should approve the transplant. Well, the insurance company sent it to the wrong doctor, they sent it to an allergist. When they received the review back from the allergist is when they noticed it was sent to the wrong doctor.  But Carrie said, they have sent it on again, to the right doctor this time.
Friday, August 7, we were packing and heading up for a week long vacation at a cottage in Howard City. The case nurse called at about 10 am and said, "we received the review back and it is not favorable. The doctor said the transplant is experimental, investigational, and not medically necessary."  Carrie said she already talked to Dr. Burt's office and they want to appeal.  Dr. Burt would like to talk directly to the doctor who did the review.  I felt totally defeated, but thank goodness Dr. Burt is willing to talk to that doctor to see if he can get the insurance to approve the transplant.
The news had taken all the fun out of our up-coming vacation plans. But then I remembered my devotions from that week.  To praise God in all things, big or small, good or bad. Praise Him! Concentrate on His goodness instead of your pain.
God help us to rest in You and wait patiently for Your timing is perfect.  Help us to let go of trying to do this on our own and trust You for Your plan is better than we can ask or imagine! -Amen

What's been going on...

THE STRAW IS DONE!  So thankful to have that behind us. We had such wonderful helpers this year! We cannot thank them enough!

From left to right, Vicky Plaggemars -friend, Keith VanKlompenberg -friend, Lucas Nienhuis -son, Delani Nienhuis -niece, Jacob Nienhuis -son, Kris VanKlompengerg - friend, Seth Brower -friend, and seated is Nate Spek -friend. Also helping, but not pictured, Bob Telman -friend, Dave DeZwaan -friend, Matt Nienhuis -brother, Jaden Nienhuis -son, and Josiah Nienhuis -son.  And I guess I helped by providing food!

Notice the difference in the stacking of the bales on these 2 wagons.  Jacob stacked the load in the bottom picture. He is definitely a grandson of my father!! My dads loads were always stacked perfectly!

Delani sitting on top of the wagon.  "Jacob keeps adjusting all the bales I stack, so I might as well give up!"

                                      
                                    They worked 2 afternoons til dark, baling almost 4,000 bales!

The sunset on the final night.  Great is Thy Faithfulness!!

Also this week has been busy with the boys in 4-H at the Ottawa County Fair.  All 4 boys raised hogs and had a great first night at the 4-H show.  Lucas received a 1st place medal, Jaden received a 3rd place medal, and Josiah received a 2nd place medal! (Josiah's first year!) They were so excited!  Thursday night is the auction.  Each morning and night the boys have to go to the fair to clean the pens and feed their pigs.  

Jacob -19

Jaden - 13

Josiah - 9

Lucas - 17

As for the steroids, he probably won't be doing that again.  He felt better for 1 maybe 2 days.  Then was totally exhausted the next day. Then it took him a few days to feel decent again.

No word yet on insurance approval.  But we figured it would take longer than the 2 weeks they suggested.

One more thing...his vision is getting worse, almost more like tunnel vision. So, if you see him somewhere but he doesn't see you, it's legit, he's not avoiding you! I was sitting in the bleachers at the fair and he came and sat down probably 10 feet from me.  I had to get up and go over to him and say, "we are sitting right over here." We got some strange looks!  

What do you want people to know about MS?

Read this great article on facebook this week.  

What do you want people to know about MS?

By Editorial Team—March 21, 2014  www.multiplesclerosis.net

Explaining what it’s like to live with multiple sclerosis can often be difficult…and frustrating.  We recently asked our Facebook community what they wanted others to know about MS.  With well over 300 comments, here are some of the most common responses:

MS is unpredictable

• No two people progress the same – it’s not one size fits all
• My symptoms can change on a daily or sometimes hourly basis
• It can literally & figuratively knock you off your feet at anytime
• MS is like a box of chocolates you never what’s in it until you get it
• It’s a roller coaster…you have ups and downs, twists and turns, except it is never fun
• MS tries to steal your self worth every day by stealing little things you could do the day before
• Just because yesterday was a bad day doesn’t mean today will be

MS is real – it’s not an excuse

• This is not something I chose
• It’s out of my control
• I’m not faking it
• I’m not being a hypochondriac or lazy, I just hurt & need to rest
• MS is exhausting and can cause extreme fatigue and horrific pain

MS is not a death sentence  (and it’s not contagious!) 

• This is my struggle and what makes me stronger
• MS is not fatal, and isn’t always debilitating
• It doesn’t change who you are, just what you can do
• It’s a terribly frightening diagnosis to receive. But, with time and education, it’s not the end of the world

MS can be invisible

• I may look fine on the outside but feel terrible on the inside
• MS makes you appear somewhat normal on the outside, but wreaks havoc on the inside
• Others can’t necessarily see our limits, as we see and feel them and they can’t push us past them.

MS can sometimes be stressful and depressing

• Slowly and quietly takes away our mobility, our cognitive thinking, and our dignity
• It’s unbelievably hard to live with -mentally physically and emotionally

MS is a constant battle – for everyone

• It’s on my mind even when I feel well
• MS is something you think about every day; there is never a break
• It’s devastating  – it is not just to the victim but the whole family has the disease
• MS requires those who love us to be open minded with great big hearts

MS still has no cure

• MS can’t be fixed with the miracle potion you are selling
• We need research for treatment and a cure

Steroids

This week Keith has been receiving steroid injections at Holland Hospital.  The steroid injections are supposed to give him a boost of energy, nothing more than that.  Not sure how long they will last or how often he will need them or if they will even help.  But you don't know til you try! Thursday was his first dose. He said he felt a little stronger, and could stand for longer periods of time, but didn't sleep more than 2 hours that night.  Friday was the 2nd dose, and he left feeling like he could move mountains, compared to what he felt like before. :)  I also called to make sure he could take sleeping pills. Yes!   His 3rd dose is today.  Praying he gets the boost he needs to bale around 4,000 straw bales next week. Or maybe that is why we have 4 boys?  We are seeing a lot more of the the "big picture" lately.  God definitely knew what he was doing when he designed our family. The boys have taken over a lot of the work around here, mostly without complaining. They don't ask a lot of questions but they struggle with knowing what is happening to their dad.

You've been accepted!!!!

Dr. Burt's nurse, Kate, told us after the evaluation that we could possibly hear an answer tomorrow  (Thursday), or for sure by Monday.  She would call or send an email.

On Monday, July 13, around noon, Keith got the call from Kate.  It was great news, "you have been accepted off trial. The next step is to get your insurance to approve. It will take me about 2 weeks. I will call and let you know what I hear from them." 

Praise the Lord!  To God be the Glory! We knew it wasn't impossible cause we serve an awesome God, but WOW!  We are humbled to say the least.

Chicago...here we come!

On Monday, July 6, Keith and I headed to Chicago for Keith's evaluation. We had reserved a hotel room which was about 200 yards from Northwestern Memorial Hospital where Keith would have most of his appointments. We made it to Chicago with no problem.  Keith navigated while I drove.
Keith's MRI was Tuesday morning at 7 am. It was cold and rainy.  Keith was called in just after 7 and we were told it would be about 2 hours.  So I sat in the waiting room and read a book.  At 9am, Keith was not out.  At 9:30, I thought, "oh great, he got sick all over himself in the machine".  HA!  (He was really nervous about being claustrophobic in there for 2 hours!)  At 9:45, it wasn't funny anymore.  I thought, "should I go find a nurse and ask if he is OK?" At 10, I started pacing.  I went to get a drink, I went to the bathroom, etc. Then finally at 10:30 he emerges. 3 1/2 hours!! Later I read this on the results from his MRI:  "Please note that several sequences were repeated secondary to motion. The technologist noted the patient fell asleep during the exam."  Wow, I was freaking out and he was catching a nap!!
After the MRI Keith had to have some blood work done at the same hospital.
At 1pm we had to meet with neurologist Roumen Balabanov.  He also evaluates Keith and together with Dr. Burt will make a decision if Keith qualifies.  Dr. Burt gets the final word, it is his study.
Dr. Balabanov's office is at Rush Medical Center.  We took a 15 minute cab ride - Keith's first time in a taxi.  Traffic was busy and neither of us wanted to drive in that.  It was only $15 each way, whew!  Dr. Balabanov's evaluation of Keith is very thorough.  He is pleasant but not compassionate.  At the end he said, "I'm not sure why you are here, you do not qualify for Dr. Burt's study."  I said, 'we knew we didn't qualify, but you still wanted to see us for an evaluation."  He said, "we don't really know your condition until we evaluate you."  Let's just say we left there feeling very defeated.
At night we ate at Giordano's, Chicago's famous deep dish pizza.  It was excellent!
Wednesday was our meeting with Dr. Burt at noon. Keith was not feeling good at all.  Dr. Burt came in and said, "so, you were referred by Dr. Prentice? He is a good man."  Whew!  Off to a good start!  It was a whirlwind of questions, and a quick physical evaluation, small chit chat about being Keith a farmer and Dr. Burt growing up on a ranch, and again we hear, "you don't qualify".  But this time we also hear, "but I do treat people off study who still could benefit from HSCT. I will talk with Dr. Balabanov and we will make our decision and let you know."  He also went on to say, he has only treated around 200 people with HSCT, no one has died, but there are a lot of risks. They also were still unsure what type of MS Keith had.  Dr. Burt only treats those with Relapsing-Remitting MS (RRMS).
After Dr. Burt left the room his nurse, Kate, went over a timeline if Keith was to be accepted.  I thought that was very strange. Why would she take about 10 minutes, holding a calendar and pointing out dates and times to us?  I didn't want to get my hopes up, so I told myself it was protocol.
After leaving Dr. Burt's office we headed for home.

We stayed at the Hampton Inn on the 33rd floor. This was our view!

What is HSCT?

What is HSCT you may ask? First, your immune system is tamped down using low-dose chemotherapy.  Then, doctors use HSCT therapy, involving an infusion of your own stem cells, previously harvested from your blood, to reboot your immune system.  After a short stay in the hospital, you go about your normal life, needing no "maintenance" drugs.
Currently HSCT is only a medical trial, not FDA approved.  There are many qualifications you have to meet to be part of the trial.  We knew Keith did not qualify, but were excited to hear that they still wanted to evaluate him.  After your evaluation, Dr. Burt will tell you if you qualify for the trial.  If you do not qualify, but he knows that you could still benefit from HSCT, he may treat you off study or also called compassionate basis.
We prayed for God's will to be done.

How we got where we are

After the diagnosis on April 7, I remember searching and googling and surfing the internet for hours.  I knew nothing about MS.  I knew 1 person with MS.  I was scared to death.
On April 8, I sent a prayer request email to my co-workers at Family Research Council (FRC) explaining that Keith had been diagnosed with MS and to please pray for us as we digest this news.  FRC is based in Washington, DC, so our Holland office works closely with the DC staff.  Chris Gacek in DC, sends me an email back saying that there is a procedure done in Chicago by Dr. Richard K. Burt that is like a "cure" for MS.  It is called Hematopoietic Stem Cell Tranplantation (HSCT).  Dr. David Prentice a former FRC co-worker is good friends of Dr. Burt and worked closely with him in Stem Cell Research.  So through these co-workers I received Dr. Burt's contact information and sent him an email, and left a phone message that we are interested in HSCT.  Dr. Burt himself calls me within 2 hours of my initial email!  WOW! it sure pays to know the right people! He instructs us to send in all Keith's neurology notes and DVD's of any MRI's that he had.  After weeks of emailing back and forth and getting insurance involved, we finally get our evaluation date:  July 7 & 8.  Praise the Lord!
We have also joined a closed facebook group of people who are interested in HSCT.  There are about 4,000 people in all different stages of the transplant process.  Some have already had the transplant and their stories are so encouraging! A lot questions in that group being asked and answered has been so helpful to us! People of all different walks of life from all around the world, trying to get their lives back to normal.

                                            Dr. Richard K. Burt

                                               

MS Timeline

We have started a blog that will track Keith’s journey with MS.  I am definitely not a writer but it will be nice to have everything written down in one place. Hopefully someday we will be able to look back and see how far we’ve come, what it took to get there, and how God’s hand was evident in all of it.  Feel free to check it out and to pass it on!

1997ish
We were married, had Jacob, and living on a dairy farm in Byron Center.  Keith started having double vision. He saw his doctor and had an MRI.  At the time they said it could be Multiple Sclerosis (MS).  Keith had a week of steroid injections at Holland Hospital.  Double vision went away and he felt good for a lot of years. We figured it wasn't MS.
We had Lucas in 1998, moved to Olive Center (North of Holland), then had Jaden in 2001, and Josiah in 2005. Yes, we have 4 boys!!
2010ish
Double vision returns. Saw an eye doctor and was given glasses with prisms.  Doctor suggested being seen by a medical professional.  Keith being a typical man, passes on getting checked out by a medical doctor. Looking back, most of his symptoms he has now probably started out around 2010, but he figured he was getting old and slowing down. (He was only 40.)
2014
Legs started getting weaker. Vision is getting worse.  Fatigue sets in.  December 9, Nichole spends 2 weeks at Butterworth Hospital with Guillain-Barre Syndrome.
2015
While meeting with Nichole's neurologist we started asking him about Keith's symptoms.  He also suggests being seen by a medical professional. We get Keith into a neurologist, and he receives his first MRI of his brain on February 26.  Lesions are found on his brain and another MRI is ordered of the spine, March 12. More lesions found on his spine.  Lumbar puncture on March 26. Spinal fluid abnormal.  Diagnosed with MS on April 7. More fatigue, weakness, double vision, tingling, numbness, brain fog, slowed/slurred speech, trouble walking, trouble standing in one place, etc. April 21, started Gilenya  - the medicine prescribed to help stop the progression of MS. Gilenya should start working in about 3-6 months. Only $5,000/month. Insurance picks up the tab.  PTL!
And that is our timeline of the progression of Keith's MS. Keith feels like the progression has leveled off, hoping the Gilenya has started its job.