6 month Check-up with Dr. Burt

On Monday at 5pm, Keith, Josiah, Jaden and I headed to Chicago for Keith's 6 month post transplant check up with Dr. Burt.  He had a 6:45am MRI the next morning, so we stayed Monday night to be sure we made it on time! We stayed in our same hotel which is kiddy-corner from the medical offices where all Keith's appointments were, and also across the street from a parking garage where we could get discounted parking because we were there for medical purposes. And because they have really good coffee and breakfast. :)

We made it on time and the MRI went really well. Keith also had to have some blood work done, but then we were free the rest of the day. The boys enjoyed the pool this time, it is at the top of the hotel and open to the sky. So this winter when we were there it was not open, it was filled with snow.

After lunch we headed to the Museum of Science and Industry where we found out Keith is still not ready to keep up with us walking/exploring.  He sat on a bench and waited for us. So me and the boys quickly saw what we wanted to see and do. Hopefully by his next check-up he will be feeling more up to sight-seeing.

The boys are being buckled in the flight simulator at the Museum.

On Wednesday, at 10:30, we met with neurologist Dr. Balabanov, who assists Dr. Burt in giving another opinion of the patient. Our initial appointment with him in July 2015 did not go very well, so we were a little skeptical of our visit this time.  But he was amazing to talk to!  He walked in and said, "look at you with all that hair, and a tan!" We chatted for about 30 minutes and he explained everything very well.  Keith asked about working too hard and if that could be damaging what he has already gained since he felt like he had regressed in July. Dr. B. said there is no way you can hurt what you have already gained. Whew!  He explained that because you are working so hard you are sending signals rapidly through damaged nerve tunnels and after awhile those tunnels get tired and shut off, thus you experience the set back. He said you need to stay within your means of ability, once you push yourself outside that circle by working too hard, you will notice some of your old symptoms coming back. So Keith has to really keep pacing himself yet, which is difficult when you are a farming especially in the summer. But that circle should start to expand as Keith heals.

Dr. B. would also like Keith to start Yoga.  HAHAHAHAHAHA...I laughed out loud! Yoga, because you don't work up a sweat and you don't push yourself too hard. We shall see about that! :)

Keith also asked about the medication he is taking. And Dr. B. said Keith could go off all his medicine except for the Vitamin D and the Acyclovir which is an anti-infection medicine which helps his new immune system. So that will be wonderful! There are also very few restrictions anymore. So he is able to mow the lawn, take out the garbage, and swim in lakes and pools again!

Since May, Keith's triglycerides have been extremely high, in the 1,000's and they should be in the 100's. So Keith has cut out bread, potatoes, pasta, rice, and sweets and his triglycerides have dropped to the 200's. He has also lost 24 pounds! They said to keep doing what you are doing, it's working!

Dr. B. explained that at the 6 month point you are just beginning the upward climb of gaining what you lost. Cannot wait to see what Keith will be like in 2 years! We maybe don't even realize all that was lost over the last 15 years, and we will be amazed at what he can do again.

Keith with Dr. Burt.  Keith's shirt says, HSCT = Hematopietic Stem Cell Transplant

There was a guy in our facebook group selling these t-shirts to raise money for his own transplant and Keith wanted to help him out.

I believe we were told the white spots are the lesions on his brain.

Our meeting with neurologist Dr. Burt was at 12:30 on Wednesday. He walked in, looked at Keith and said, "so you are here for your 1 year check-up?" No, 6 month! To which he raised his eyebrows. Then started a whole list of questions, which lasted about 2 minutes, then he was shaking our hand, posing for a picture, and out the door! wow. I think he was in the room for 3 minutes, total. But then his nurse came in and handed us the MRI results and said, "no new or enhancing lesions" like it was no big deal!  That is basically like saying, "you are now cancer free!" I think they are just so confident in their transplant that it's not that big of news to them anymore. (WE are still trying to wrap our minds around this news!)  She answered the remaining questions we had and was very helpful. Keith had to do a bunch of testing in another room which he said he failed miserably, but again, hopeful to ace those tests one day!

There is just so much to be thankful for when you spend a few days in and out of waiting rooms and doctors offices. So many hurting people. We are SO SO blessed! It's hard to see what could have been Keith's future and to think we were saved from all that. And again our thoughts and prayers of thanksgiving go to our great God and His healing mercies, but also supporters and how truly grateful we are to all of you!

We headed home after our appointment with Dr. Burt. I could not entice them with any more the city had to offer. They wanted to get home. Home sweet home!

6 Months Post Transplant!!!

Well, we made it! We survived the first 6 months of the road to recovery.

June was busy planting, and hoeing our 8 acre pumpkin patch. Keith did a lot of planting, and hoeing in the patch. Each row is about a quarter mile long, so he could do 2 rows a night (1/2 mile), but then he would be dead tired the next day or 2.

We also had some awesome helpers from our Youth Group and Post-High Group.

We also had 2 graduates in the month of June. And a lot of Birthday parties (Keith 46, Lucas-18, & Jacob-20).  Lucas graduated from Zeeland West High School.  He is currently working full time at Quality Machine Shop.

 Jaden graduated from Creekside Middle School (8th grade). He is currently helping his dad on the farm.  He has grown into a young man this summer - baling about 5,000 bales already!

June also kicked off the haying season. Keith baled 40 acres of hay, mainly driving the tractor, but he did want to test himself and see if he could unload some bales too. He stayed outside on the wagon, the loft is still too dusty. He could unload a whole wagon of hay bales. But again, this would set him back a bit. Overall, he was feeling great in May and June!

July was a crazy month of raising and training 4-H animals (8 hogs and 1 steer) for the Ottawa County Fair.

The guys also baled 100+ acres of straw in July = 50 loads or 6,000 bales.

And then the heat came, and Keith is not doing as well. :(  One of the things with having MS is ZERO heat tolerance. If the sun is on him, it is literally draining his energy right out of him. We were really hoping this was being cured, but when July hit, we realized he has a ways to go with that. He is still doing good, but is not gaining this month like he was in May and June, if anything, he went back a touch with his energy level, double vision, and numb and tingly hands/legs. He pushed himself HARD this month, working sun up to sun down, doing things that would tire a normal 46 year old man, let alone a man with MS who just had a stem cell transplant!

And now it's August and time to head back to Chicago to see how Keith is doing!

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