3 Months Post Transplant

Here we are already, 3 months on the other side of having a stem cell transplant!

Keith continues to gain and we are so thankful for this progress. Coming into Spring and Summer, he is getting the itch to get out of the house and start working again!

About 2 weeks ago, after having normal blood counts for a month, Keith was able to drop a few of his medications and discontinue his weekly blood work. He can also start working on some farm machinery getting his hands greasy, but still no dust with the bead board, hay or straw. He has done some bead board, mowed the lawn, and moved some bales, but he makes sure it's well ventilated and that he wears a mask. He has had no trouble doing these things except for the fact that it really tires him out. He is hoping to take over the bead board, soon. Again, we are so thankful for the work Dave DeZwaan has done, coming faithfully each week to fulfill the bead board orders. In a few days, hay is going to be cut and so it begins....the boys are ready!

HAIR :) His hair has been growing for quite some time but he was constantly shaving it bald hoping it would come in thicker. When it first started growing it was pure white, baby soft, and very thin. Then it was gray, thin and stubbly. But now it is red again, coming in much thicker and stubbly. He is good with that and is letting it grow!

Keith continues to go to Physical Therapy and Occupational Therapy each week. Physical Therapy is working on gaining strength and balance. Occupational Therapy is working on his vision, helping his eye muscles to work together and get stronger to eliminate the double vision. He is currently wearing glasses that he wore in 2013! His glasses from 2014 and 2015 are stronger lenses which he no longer needs. :) So some of his vision is coming back. PTL! In the last week Keith feels like he is getting much stronger almost like he has turned the corner from -healing from the chemo- to now just gaining strength each day. Again, we are just so thankful that we are on the up-swing of this disease, thankful to God for his healing work, and thankful to a wonderful community of believers that have been lifting us up in prayer.

This week Lucas will graduate from Zeeland West High School and Jaden graduates from Creekside Middle School 8th grade. Life has become more normal around here with end of the school year busyness and it feels good not to be consumed with doctors, meds, appointments, health, healing, etc.

We have also scheduled Keith's 6 month post transplant appointment in Chicago for August 8-10. Keith will have another MRI to see if the lesions on his brain and spine have stopped growing. This will be the true test to see if the Stem Cell Transplant has stopped the progression of his MS.

We recently experienced another huge blessing in our family. Keith's sister Karin and her husband Steve adopted a son from the Congo. They waited patiently for over 3 years to bring him home. They never lost hope and never gave up on him, always trusting in the Lord. On May 12, (my dad's Birthday!) Christian Abraham Steven Meeuwsen came home to join his forever family!!! We thank God for this precious miracle.

 Steve, Karin, Kate and Christian Meeuwsen

We also experienced a great loss to our Church family and community. The very next morning, May 13, a large part of our Church burned down. The cross on the front of the Church lit up at night and there was a bad transformer in the inside wall behind the brick that caused the fire. The Church is fully insured so we hope to start clean up and rebuilding soon. As for now, South Olive CRC has allowed us to worship at their Church after their services. Thank you SOCRC!!!

Faith United Reformed Church

Every day we wake up and thank God for our health, even though we don't always feel 100% healthy, we both know what it feels like to be so much worse. We are blessed to be living in such a great area of committed, caring doctors and beautiful, clean hospitals, loving friends, family, neighbors, co-workers, etc. It's been a long journey but we are seeing the light at the end of the tunnel and it is only by God's grace and mercy that we have come this far. Blessed be the name of the Lord!

May God bless you as you continue to be a blessing to others.

No news is good news

Christmas 2015

Well, they told us it would be 6 months before he would be feeling better, and it's looking like they were right. I guess going into this we (maybe more I) thought Keith would sprint through recovery. After all, he is a pretty tough guy! But they said, "we wiped him out, it is a very harsh treatment plan. Even tough guys struggle." Keith is gaining, but it is very slow.
Keith now goes every other week to have his blood tested here in Holland. All his counts are right where they need to be. PTL!
On Monday, March 21, Keith saw his neurologist here in Holland. Dr. Ariagno. This is the second time we have seen him, and we will continue to see him every 6 months. Dr. Burt is the neurologist in charge right now, but we want to keep Dr. Ariagno on board because after 5 years, we are done with Dr. Burt. Keith will always have MS, so we will need a neurologist here for future needs. We did not need Dr. Ariagno's permission to see Dr. Burt but he was excited from the get-go! At our first appointment, when we mentioned we were doing the stem cell transplant, he said, "this is the up-and-coming thing! We have to keep trying new things to advance medicine. If no one participated in these trials, we would never know if this kind of treatment works." So he was excited to see Keith now and was impressed at how well Keith looked and is doing, thought his counts look good, and his kidney and liver too.  Keith had to walk down the hall for Dr. Ariagno, a typical request from any neurologist, and again, the Dr. thought Keith did great! Keith no longer shuffles his feet when he walks, he picks them up. And he walks faster and his gait is steady. PTL! These may not seem huge to you, but this is PROGRESSION!!!
Keith and I have been walking up to a mile each night. (Man, it is FRIGID out!) Sometimes not as quick, and sometimes not as far, but he keeps a pretty steady pace, and again we are thankful to be out walking.
Keith is not supposed to be around sick people for 3 months. But he has been going to a small men's Bible Study at Church, with me to Couple's Club, out for breakfast a few times with friends, and to Tractor Supply (TSC) a time or 2. He is able to drive but not far. He is still pretty weak but is working on building his endurance. Again, it has been a very slow process and can be discouraging at times.
Keith is still not able to work and this will be for at least 2 more months. He needs to stay away from dust and dirt for 3 months. His shop is super dusty from running the bead board and his barn is dusty from all the hay and straw. A HUGE thank you to Dave DeZwaan who has been making all the bead board, and a BIG thank you to our boys who have been running the farm.
Some of the things he wishes would hurry up and heal are: his double vision and the numbness and tingling in his left foot/leg. He wears glasses to help his eyes see correctly, but he cannot stand to wear a shoe or even a sock on his left foot right now.
It has still not been one full year since Keith was even diagnosed with MS, and look how far we have come!! Next month we will celebrate on April 7 God's faithfulness to us over the past year. When we thought life was spiraling out of control, God had us in the grip of his hand. We have been covered in prayer and blessed in so many ways. Although it has not been easy, we have learned a lot of good things along this journey, especially all the different ways you can love and serve others. We continue to trust that God will provide for us, and that He would heal Keith so that he can do the things he enjoys again. We know that God's timing is perfect so we will wait on Him.

Happy Easter everyone!

What's been going on...

Picking up where I left off from our last post....

Keith received his stem cells on Tuesday, February 9th. That night he was up all night sicker than he has ever been. But the nurses stayed on top of things and he was better by morning. With all the chemo he endured, he was thankful to only have 1 night of sickness.
The night before he was discharged, Wednesday Feb. 17, he was up all night with bone pain. He said it felt like someone was drilling screws into his bones, mostly his legs, arms and hips. But it was a good sign, it meant the stem cells were engrafting back into his bones. He woke me up with his thrashing and moaning and we decided the Norco wasn't cutting it. We called the nurses and they gave him some Dilaudid through his PICC line and within a minute he was relaxed and not feeling the pain.
Keith was discharged from the hospital 3 days early on Thursday, February 18. Praise the Lord! He was discharged late in the day so we decided to stay at the hotel that night and head home early in the morning, Friday, Feb.19. It was so good to be home!

 We missed out on getting our picture with Dr. Burt, so this is

Allison, one of Dr. Burt's nurses, who made sure Keith was well taken care of.  She did rounds with Dr. Burt in the morning and then came alone in the afternoon.

The staff at Northwestern was amazing! ALL the nurses that took care of us were so friendly and wanted to know about Keith's process and even about our family. They all gasped when we said, "we have 4 boys!" It's OK, we are used to it. :)

Almost everyday was a beautiful, sunny day which helped with all the walking I did back and forth from the hospital to hotel. Some days were really windy and bitterly cold, but always sunny!

So what's next?

Keith needs to have his blood tested once a week to make sure his counts are going in the right direction. He has that done right at his doctors office, here. They fax his counts to Chicago and then Dr. Burt's office calls and lets us know how things are progressing.  He will need to have his blood tested once a week for 4 weeks, and then every other week for 4 weeks. In 6 months we will head back to Chicago for an MRI to make sure the lesions on his brain and spine have stopped growing. If those lesions stop growing or even fade away, the healing can begin of his nervous system. And that means gaining a healthy life back! The sooner you have the transplant done after you are diagnosed, the better chance of recovery you will have. Keith has noticed a few changes already, but it is still early, they say at 6 months post transplant he should be feeling like a new man. So stay tuned, we will update as he progresses. Right now he is weak from laying in a hospital bed for a few weeks, and he cannot be around crowds of people, his shop or barn, for a few months. Staying healthy at this point is huge! We are hoping he is able to start physical therapy next week to help gain some of his strength back. But otherwise he is feeling good!

We received some donations from a few friends that wanted the money to go to our kids so that they could do fun things when they came to Chicago to visit us. What a neat idea!

So, Friday night, February 12, Uncle Mike took the boys to Chicago and we went to Monster Jam! (Uncle Mike fell asleep! Sorry no pic.)

Then Uncle Steve, Aunt Karin, Kate, Aunt Taraynn and Delani, came to Chicago! We had fun taking the metro to Chinatown and watched some of the Chinese New Year Parade and ate Chinese food! It was snowing and freezing cold.

On Monday, February 15, the kids had off from school so they were able to stay Friday-Monday, so we went to the Field Museum. So fun for boys!

We also visited the Lego store a few times! 

The boys and Uncle Mike headed home Monday night.  Aunt Taraynn and Lani left Tuesday night, and Uncle Steve, Aunt Karin and Kate left Wednesday night.  We also had several visitors from our Church: Tuesday our friends Bob and Angela Telman came.  On Wednesday, our Elder Rick Diemer and his wife Kathy came with our Deacon Brian TenHaaf. We were blessed to have so many visitors to help pass the time!

We continue to be encouraged by our supporters. Thank you for the cards, gas cards, grocery cards, meals, goodies, etc! We are definitely feeling the love. :) We hold tight to our faith and God's promises and are excited to see what the future holds for Keith.  Love and blessings to you all!

Stem Cell Transplant

Yahoo! We made it. We thought this time would never get here. But GOD IS FAITHFUL!

On Wednesday, Febuary 3, we left for our final trip to Chicago. And boy! were we ready!

At 1pm that same day, Keith had a Triple lumen PICC line put in. This is for medication, hydration, chemo, blood draws, etc. Crazy spot, huh?

That night we stayed in the same hotel, Hilton Homewood suites, that we have been staying in on previous trips. I got a great deal through Travelocity for $81.75/night! I will be just sleeping & eating here, Keith will be staying at the hospital. On Thursday at 7:30am, Keith was admitted to Northwestern Memorial Hospital. His room was on the 15th floor, it was big, but it had one small window, and the view wasn't great. They right away told us that we would be moved to the 16th floor as soon as there was a bed available. The 16th floor is where Dr. Burt's patients are. 

The next day we were moved to the 16th floor to the exact same room we had during our last stay here. HA! Two big windows with a better view!

Also on Thursday, Keith started his first of 4 days of chemo. He would get chemo around 2pm each day and it would run for a couple of hours. (The chemo works to kill his immune system so it stops attacking his central nervous system. Once the immune system is killed, they put in the stem cells to jump start the growth of his new immune system.) They also gave him some anti-nausea meds to help him stay ahead of getting sick. He did great through all 4 days. He never got sick, but it drained him pretty good. A couple of laps in the hallway each day was enough to wear him out.

Friday afternoon, February 5, Keith's parents, Dale & Marla Nienhuis, came with our youngest 2 boys, Jaden & Josiah. Dale sat with Keith while me and the boys showed grandma the Water Tower Plaza, Lego Store, and we had to pick up more hand sanitizer, so we hit Bath & Body, too. Saturday night, we enjoyed some deep dish pizza. Other than that, we basically just hung out with Keith, and in our hotel room. They headed home Sunday noon.

Here we are at Gino's East, which is right behind our hotel and on-the-way to the hospital. We played 5 Crowns to pass the time. :)

Sunday night we watched the Super Bowl. Neither one of us had ever watched the whole thing, so we had to see what all the hype was about. We were both disappointed. Oh well, at least we know that we haven't been missing out all these years!

Monday. Keith is dragging, sleeping more than usual. He basically has no immune system, so he is pretty week, barely has a voice. Which most of you know, he barely had a voice to begin with. I'm ALWAYS saying, "what?" :)

Today is Tuesday, February 9th, the BIG DAY for him! New stem cells!!! Hopefully not a single one of the 9 million stem cells remembers anything to do with MS. Hopefully they are all babies and ready to begin a new, healthy life!

Frozen stem cells in big white container.

 Thawing stem cells.

 Stem cells coming back through IV.

So, everyone told us it smells like creamed corn when you get your stem cells back. Yep, the whole room smelt like it! So strange. 

Again, we pray for each of our supporters every day, and thank God for every one of you. I know we say this a lot, but we mean it! We would not be here, hoping for another chance at a healthy life, without God and without a single one of you! To God be the glory, great things He has done!! Love to you all!!

Missing these guys...the loves of our life!!

Harvest

On Friday, January 8, my brother Mike Vander Zwaag and our sons Lucas (17) and Josiah (10), came to Chicago to visit. Jacob(19) and Jaden (14) were too sick to come, so they stayed back with grandma VZ. On Saturday, Mike showed us parts of Chicago that we had not seen but that he is familiar with.

Then in the afternoon we went to Shedd's Aquarium.  PLEASE, if you ever visit Shedd's, buy your tickets online in advance. We waited an hour in line just to get tickets!!  But it was still fun once we got inside!

On Sunday we just hung out and then they headed home in the afternoon.  It was really hard not having all 4 boys there. We missed Jacob and Jaden A LOT! But having the others visit was just the encouragement we needed.

Also on Sunday, Keith started his Neupogen shots. These shots created new stem cells that do not know MS, they are also called infant stem cells. The shots also made the stem cells come into his blood stream so that when they harvested his stem cells it would just be through his blood and not bone marrow. On Wednesday, Keith had a lot of bone pain from the shots which just meant his bones were working hard to produce more stem cells. But he only had pain for a day, and by the next day, it was gone. PTL! On Friday, January 15, Keith's stem cells were harvested. He had a line placed in his neck at 7:30am. Then at 11am they had him hooked up and ready. The line in his neck and the machine that he was hooked to were the exact same I had when I had Guillain Barre. His blood was pumped into this machine, then it would spin the blood and separate the stem cells from the blood. The stem cells went into a bag and his blood was pumped back into him. In 3 hours they collected a whopping 9 million stem cells, in just 3 hours. BOOM!

The bag on the right that looks like applesauce are his stem cells. The bag on the left is plasma, they took some of that out too, not sure why.

His line was removed from his neck and we were on the road home by 6:30pm and home by 10pm. We couldn't wait to see our kids!!

Other than the bone pain for a day, Keith tolerated everything very well. He is feeling good and has even been riding his snowmobile at night. He needs to stay away from crowds, sick people, and no eating from salad bars, no moldy cheeses, and no meat, fruit or veggies that have been cut at a deli/store. And he has to wash his hands A LOT!

On February 3, we head back to Chicago for our final time there, Lord willing. Keith will have 4 days of chemo to kill his immune system once more, and the on the 9th he will get his stem cells back to give his immune system a jump start towards healing. He will be in the hospital the entire time and hopefully discharged by the 21st.

We are so blessed to have another part of the journey completed. Praise the Lord! He is so faithful. We thank God for all of you - our supporters, prayer warriors, friends - and we pray that He will pour a special blessing on each and every one of you! 

"I thank my God every time I remember you."

Ephesians 1:3

Mobilization

Mobilization is the term used by Dr. Burt's team, meaning: Mobilizing or moving your stem cells from your bone marrow into your blood stream. That is what we are in Chicago for this time. 

We left home on Monday, January 4 around noon. We missed a chest x-ray when we came in December for pretesting that needed to be done. So we knocked that out of the way and then unloaded all this into the hotel. 

Then on Tuesday, January 5, we were admitted to Northwestern Memorial Hospital at 7:30am and he was hooked up and ready for chemo by noon. Keith received a 2 hour dose of chemo to knock out his immune system, which won't be knocked out until about Tuesday. By 2pm he was up walking the halls. He took chemo like a champ! Take that MS-POW!

This was his room (#1671) at the hospital. We are hoping for a room on the west side of the hospital for our stay in February. Here is a picture of his room. Notice my little window seat bed. It was alright for a night, not sure how 3 weeks is going to feel.

Here is the view from the west side rooms; sunrise and Lake Michigan!

On Wednesday, January 6, we were discharged from the hospital to the hotel with orders to stay away from crowds, sick people, and wash your hands, A LOT.  

We are staying at the Hilton Homewood Suites on Huron St.  

View from hotel:  

 Our bedroom is separate so Keith can shut the door and rest if needed...and I can watch TV in the living room area without bothering him.

Our kitchen and living area are combined. We have a microwave, full fridge, dishwasher and stove! The couch pulls out into a double bed. Breakfast is included everyday and Supper is included M-Th. Breakfast is excellent and Supper has been decent too, although last night was Lamb, the soup and salad were good! Keith is glad that he doesn't have to leave the hotel to eat.

This morning after breakfast we checked out the exercise room on the top floor. It is really nice, lots of treadmills, stair climbers, and bikes and they each have their own TV attached to them! Keith pedaled and I walked. The view is outstanding! This was a nice break to the morning boredom. 

After a lunch of chicken soup, Tortilini soup, and banana bread (thanks mom!) in our room, I ventured out and went shopping. I first had to pick up some more prescriptions, Tylenol, alcohol wipes, antibacterial soap, and laundry soap, at Walgreen's. Then I went to The Water Tower Place, & H & M.  On my way I found a McDonald's, Chic-fil-A, Subway, and a Red Robin!  NORMAL FOOD...just in case. I think I'm finally able to navigate the streets without my map. And I only go during the daytime. Tomorrow I'm checking out Crate & Barrel. Everything seems really expensive, but it's fun to look and it gets me out of the hotel. :)

On Sunday, January 10 Keith will start his Neupogen shots. That is the medicine that will move his stem cells into his blood stream for Harvest on the 15th. He will have to give the shots to himself in the stomach.  We do not have to go to the hospital for that. And I think I will pass out if I have to do it. They say by Tuesday he will be feeling lousy, and may have some bone pain due to the fact that his bones will be working hard to produce more stem cells. They hope to collect at least 2 million stem cells!

Please continue to pray for good health for the both of us, and especially our kids. A few of them are pretty sick right now and will not be able to visit us this weekend if they are not healthy.  We are extremely sad about that, and I think they are too. I know the stress of all of this has a lot to do with it.  If they are able to come, pray for safety on the roads. My brother Mike will be driving them down and is excited to show them the city, if it all works out. 

We are so thankful to be given this opportunity. Giving God all the glory!

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!