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