Round 3

Nate had his third chemo treatment on the 27th.  The plan is 6 chemo treatments before the stem cell transplant- so he is halfway done!  It was hard for Nate to go to this chemo session because he was feeling so good.  The doctor understands that, but he also reminded us that all of this is to hopefully make Nate feel good for a long time.

Nate is not feeling great after this chemo round.  Please pray for minimal side effects.  And our kids have a cold so please pray for everyone's health.

Almost Christmas

We have been quiet on the blog because life has been quiet- we are thankful for that!  Our family has been doing normal for the past week or two.  Nate is working and feeling good.  The kids have their last day of school today and then two weeks of Christmas break, we'll see how that goes! We are missing a couple family Christmas gatherings which is disappointing, but we do what we have to do. Nate's brother Reuben from PA visited us for a couple days last week.  His brother Pete and wife Jess from CA will visit us next week.  We are grateful for family.

Nate and I went to an informational meeting at Gilda's Club in Grand Rapids.  Gilda's Club is a cancer support community.  We would not have necessarily searched it out for ourselves, but we think this could be helpful for our kids.  Every Thursday night at Gilda's Club is family support night.  They serve dinner and then have groups for all of us.  Nate can attend the cancer survivor group, Stacy the family/friends group, Caleb the tweens/teens group, Isaac/Julia the Kids Talk group and the littles have an awesome child area to play in.  We will attend as a family a couple times in January and see if we find it beneficial.  And Gilda's Club is free- bonus.  So I am thankful for this resource. But, I also left Gilda' Club feeling a little angry.  I do not like that our family even has to attend this place and make space in our family schedule.

Nate has outpatient chemo on the 27th here in Holland.  We are thankful he has been healthy!  Please pray for continued health for Nate and the rest of the family.

Thank you again for all of the meals, treats, cards and emails.  You all have been a blessing to us.  We hope you have a wonderful Christmas!

-Stacy

Meal sign up

The meal sign up schedule has been extended, just click on the link on the right hand side of the blog.  Having meals provided has been a tangible reminder of support from our community.  Thank you to everyone who has blessed us with a meal!

Packers

This past Sunday, Nate went to his first Packers game at Lambeau field!  A generous friend gave us tickets a while ago.  I was praying that Nate would feel well enough to attend the game and he felt great!  Of course it was a chilly game, but the Packers won.

Our insurance company informed us that Nate will not be able to have his stem cell transplant in Grand Rapids because the transplant unit is too new to be considered a center of excellence and therefore not in network.  So he will have to go to Ann Arbor, Detroit or Chicago.  This is not good news.  The transplant will be at least a 3 week hospital stay.  It will be challenging for friends to visit Nate if he is a couple hours away from Holland.  The kids will not be able to visit Nate, maybe on the weekends.  And I do not know what I will do.  How can I be with Nate and the kids?  My anxiety level rises the more I think about it.  We are going to appeal the insurance company's decision.  However, the Grand Rapids hospital told us other patients with our insurance have been in the same situation and there is not much to be done.  The paperwork is in process for our insurance company to recognize the GR hospital as a center of excellence, but it won't be done in time for Nate's transplant (sometime around March).

 Please pray for resolution to this mess.  We are praying his transplant can be done in GR, but also praying we can accept and brainstorm how we will do life if the transplant is done elsewhere.

-Stacy

Nate is home

Nate is back home!  We were home for about 10 minutes and then we were off to Caleb's band concert.  We are thankful we made it back in time. Nate is feeling pretty good.  His energy level is decreasing a little.  Please pray for his energy, appetite/no nausea and no illnesses.  One of our kids was complaining of a stomach ache tonight, please pray it's nothing serious.

I feel vulnerable sharing this next section. We all have stories to share, human struggles are all the same. But, our story is unique to us. And I love hearing people's stories- the connectedness that brings. We are on this life journey together and God is faithful. May we find "strength for today and bright hope for tomorrow."

While Nate was receiving chemo, he learned that his company- Palisades nuclear power plant is closing in 2 years.  It was very shocking news.  Nate is confident he will find a job and he is not worried.  If I'm honest, I am a little anxious.  Our future feels so unknown already, this just adds another layer.  But some Facebook memories have been popping up recently that reminded me of God's faithfulness in the midst of our uncertainties.
   
     -Four years ago today, I wrote this post:

"Some things make me so thankful I just have to share. When Stephen had the newborn rare disorders screening done he came out as slightly positive for Severe Combined Immunodeficiency Disorder. So he needed a 2nd blood draw to see if it was a false positive. Well they botched the 2nd draw and he needed to get another one. Meanwhile we get a letter describing SCIDS and that the treatment is a bone marrow transplant. That will make your heart stop. We got word yesterday that his blood test is normal! Such a huge sigh of relief and praising God continuously!"

    -Seven years ago today we were in Korea, meeting Julia for the first time- we all had swirling emotions
    
     -We adopted Lexi.  We were nervous and confident in God's faithfulness. 
    
I could share more, but these are ones that I've been remembering recently.  Through God's strength and the support of our community we keep taking the next step forward.  Tonight I think our family just feels spent.  I'm hoping we all have relaxing moments this weekend.  

-Stacy

Second Day

Nate began the new drug and is doing well.  No weird reactions or side effects.  He is feeling good and we are thankful.  We had a variety of friends visit today and that was a pleasant way to pass the time.  I went home with the kids tonight as they need me more than Nate right now.  I sometimes wish I could be in two places at once.  We are hoping Nate will be discharged Thursday afternoon.  Please pray that will happen and that the predicted snow storm does not delay his return home either.

-Stacy

First Day

We arrived around 9:30 am. His first chemo drug was administered around 3 pm. The new drug will start around 9 pm. We learned that for the next impatient stay we need to arrive earlier in the morning so things start moving sooner. Today was mostly waiting. The kids arrived after school. We ate in the cafeteria and watched some TV in Nate's room. The kids were okay until they went home and Nate and I stayed here. Lots of tears from the younger kids. And here is some honesty- this stinks. Cancer sucks. We don't want our kids to have to hang out at a hospital or cry because they want their parents home.
Thanks for the continued prayers.
-Stacy

Oncologist Update

We met with the oncologist today and everything looks good!  Nate's blood counts are good and he got the go ahead for inpatient chemo this week.  Spectrum hospital should call this evening with details.

It was encouraging to hear that Nate's blood counts overall are better than a month ago.  And Nate feels much better than a month ago.  The chemo is reducing symptoms.  His back pain is gone, swelling is gone, intestinal issues have reduced, and his energy level has returned.  We are thankful!

Nate will receive a different chemo drug this week. He receives a total of 4 doses every 12 hours, so that is why the drug is administered inpatient.  The doctor is hopeful that because Nate tolerated the first chemo drug well that this one shouldn't be too difficult.  He said the main side effect during the hospital stay will probably be boredom. ;)   Please pray for a smooth hospital stay and minimal side effects.

The doctor explained he did not think it was a good idea for Nate (and our family in general) to attend large family gatherings during the holidays- we don't want to expose Nate to germs unnecessarily.  It was disappointing news, but we will talk thru our options.  Please pray our kids do not pick up too many sicknesses this winter and that Nate can stay healthy.

We appreciated having a positive appointment with the oncologist.  Personally, I feel like my thoughts and emotions are a balancing act.  I am so thankful there are treatment options for Nate.  But, we know the cancer will come back someday.  How does one truly enjoy the gift of today, not being fearful of the future, but also not being naive about the future?  We have friends that are praying for a miracle- that Nate's cancer will truly be gone forever.  And I pray for that too.  But.. I can't pray only for that.  I pray that God gives us strength for each day. That our family thrives, not just survives this journey.  I want us to be able to walk through whatever the future holds- whether Nate gets a miracle or whether cancer comes back.  I have had nights where fear is overwhelming and days where I feel like we are walking this road like a BOSS.  I am thankful for friends who are praying because I often do not know what to pray for.

And I just want to give a shout out to my sister!  Steph spent about 10 days here, helping us out.  The kids always love Aunt Steph (although Uncle Ben is pretty awesome too) and we enjoyed having her support and encouragement.

We will update from the hospital, although hopefully there will not be much to report!

-Stacy

Quick request

Some of Nate's friends shaved their heads this week.  We are grateful for our friends and family!


Nate got a cold this week.  He has blood work and an appointment with the oncologist on Monday.  Please pray that his blood counts are good and that this cold hasn't lowered his white blood cells too much.  We really do not want this hospital stay postponed.  And pray that he recovers from his cold soon.

-Stacy

Thankful

We had a very nice Thanksgiving.  We spent a couple days with family- relaxing, playing games and just enjoying time together.  We are thankful that side effects have been minimal and Nate has stayed healthy so far.  Nate shaved his head this weekend as he was told his hair would begin falling out around day 13 after chemo.  Our brother in law, Ben also shaved his head in a show of solidarity.  The kids had great fun helping with the head shaving.

Nate does not have any medical appointments this week and we hope it stays that way!  Please continue to pray for health- that Nate will not catch any colds or illnesses.

We meet with the oncologist on Monday, just to check in after this first round of chemo.  Then Nate will be in the hospital next week Tuesday-Thursday for the next chemo treatment.

We do read all of the notes and emails we receive- and they are so appreciated. Thank you!

-Stacy

Week One

Seems like I ought to put up some kind of update after last week.  Treatment #1 seemed to go well.  The side effects have been minimal so far.  I feel stronger this week.  I even took the two older boys to the gym on Sunday to shoot hoops.  The steroid crash that was predicted was avoided.  I think the biggest concern this week is my severely reduced immune system.  Days 7-10 are supposed to be the weakest.  I'm a little worried about church and family gatherings where germs get spread quickly and easily.  There will just have to be lots of hand washing around us for a while.  I hope you all have a Happy Thanksgiving with your family and friends. We plan to spend the holidays with the Jongsma family.

-Nate

One down

Nate had his first chemo treatment on Tuesday.  It was a long day, but everything went smoothly.  We are thankful his body didn't have any odd reactions to the drugs.  He has gone to work the past two days and feels okay.  The nurses said he might feel worse later this week.  In other good news, Nate slept in bed last night.  He's been sleeping in a recliner because of back pain, but that pain has been lessening- hopefully that means cancer cells are dying!

We are thankful for people who have cleaned our house, raked leaves, hung Christmas lights, watched our kids and brought meals.  We are grateful for our community!

Here we go...

The past couple days have been mentally and emotionally draining.  We went into our appointment with our oncologist yesterday almost positive we knew what treatment to pursue.  We talked with our doctor about Mayo and what they recommended.  We discussed with our doctor the treatment regimen he recommended originally and why he recommended it.  And then we didn't know what to do.  The reality of MCL is that there is no standard of care- no treatment regimen that data has shown to be the gold standard.  The reality is there are a number of treatment options and they all work in some degree to get to the goal of a remission.  Basically there is no right answer.  And that is so frustrating.  And our doctor understands our frustration, that when it comes down to it- we have to do something and we just need to pick a treatment path and go for it.  As my friend said, medicine is an art form.  It is based on science, but it is an art form.  Cancer acts differently and responds differently to medication in every person, you just make the best decisions you can along the way.  We so very much want someone to tell us- this is what you should do and everything will be okay. But, that is not reality.  So we spent yesterday evening praying and talking thru our options.  And praying for peace about our decision.  Because we want to make a decision, have peace about it and move forward.

Nate is going to do the nordic regimen and he begins Tuesday.  The regimen will be one day of outpatient chemo here in Holland.  Three weeks after that he will go to Spectrum Hospital in Grand Rapids, stay for 2-3 days and receive a chemo treatment.  Three weeks after that he has outpatient chemo and repeats this rotation for about 4 months?  He will then have a stem cell transplant.  

We feel at peace with the decision, but emotions are all over the place.  This is all going to become quite real next week.

Please pray for treatment to work, that side effects are minimal.  Please pray for us as we parent our kids.  It is challenging to be present and not let our frustration/stress spill over into parenting.

Thank you for your continued prayers and support, it means so very much to us.

-Stacy

Mayo Follow Up

Mayo called and confirmed the mantle cell lymphoma diagnosis.  There is an unusual characteristic to Nate's cancer but, it is unclear if or how this characteristic will affect response to treatment.  So we continue to move forward.  We meet with the local doctor tomorrow to determine the treatment plan and probably begin chemotherapy next week?

-Stacy

Mayo

Nate had his Mayo appointment today. The doctor told us what treatment regimen Mayo recommends for someone Nate's age. The Mayo pathology department is going to read Nate's biopsy slides to verify the diagnosis. The Mayo doctor will call sometime next week with the pathology results. We are done with appointments at Mayo and will head home tomorrow. We are thankful for a short stay! Once we hear back from Mayo we will meet with our local hematologist oncologist and decide on a treatment regimen.
We are glad we got a second opinion at Mayo and are satisfied with our experience here. Please continue to pray for wisdom this upcoming week as we make a final decision about treatment.
-Stacy

Lymphoma Conference

Nate and I attended the Lymphoma Research Foundation's forum this weekend.  The conference was at the Palmer Hotel in Chicago- very cool hotel.  We only attended the sessions on mantle cell lymphoma.  Both sessions had top doctors in the MCL field.  And I had no qualms cornering them after the session and asking questions!  Both doctors told us how they generally treat patients who are in their 30's-40's.  Attending this conference did not give us more answers, but it did give us more knowledge and better questions to ask.

It was also helpful to talk with other people with MCL.  Some of them are 12-16 years out from their initial diagnosis- so encouraging!  Granted, they have all had relapses and more treatment, but it was helpful to hear about the different treatment options available.  And everyone we met was so kind and encouraging.  A couple we only spoke with for only a few minutes told us to move into their house with our 5 kids if Nate ever needs treatment in the Chicago area.  That made me laugh, they haven't met our kids!  (I'm joking, our kids are awesome.) An older man with MCL prayed over us, which was unexpected, but brought tears to my eyes.

A couple of random thoughts after this weekend.  We learned MCL will always be in Nate's body. The goal of treatments is to knock down the levels and put the cancer into remission.  But, no one can predict how long his remission periods will last before the cancer starts up again.  Not going to lie, that is hard to wrestle with.  But, it was encouraging to hear about the research and new drugs being produced for MCL.  And I just want to give a shout out to researchers, that is crazy cool stuff.  That they can develop a drug that attaches to a cancer cell and delivers chemo directly into the cell to kill it? What the what?!  Also, listening to these doctors explain the human body and our cells and how "smart" our cells are, I can't help but wonder, "how can someone not believe in a Creator?" The human body is unbelievable.

So a couple prayer requests.  Nate and I leave Wednesday evening for Mayo Clinic.  They told us to plan on being there 4-7 business days.  That seems so long.  Please pray that our visit is shorter.  Please pray for wisdom- for the Mayo doctors and for us.  Pray for peace about whatever treatment option we decide upon.

Please pray for our kids.  Nate and I have been gone often this past month and now we are leaving for possibly a week.  It is wearing on our kids. 

Thank you for your messages and prayers!

-Stacy

Second Opinion

First order of business- we have a blog! We will not be using carepages anymore for updates. As someone put it, carepages can be cranky and is not always easy for people to access.  You need to go to the 'follow by email' box so that you are notified when we share an update. There are also helping links on the blog. Nate may be in treatment for 6 months, so we need to pace ourselves on the help. We do not need a lot of help yet. But, freezer meals especially are always welcome!

http://demjourney.blogspot.com/

You may share the blog with those who care about our family.

Our doctor put in a referral and Nate has an appointment at Mayo Clinic on November 3. It is a little unclear how many days we will have to stay at Mayo for testing, appointments and so forth.

We had chemo school (to learn about chemo and what to expect) yesterday and this weekend is like a cancer-cation as Nate and I are going to a lymphoma conference in Chicago to learn more about mantle cell lymphoma. We've got to have some humor about this. ;)

Thank you again for the prayers, messages and support.

Prayer Request for this Week

It is hard to know how often to update and how many details to share. But, my friends have encouraged us to share specific prayer requests.

We ask that you pray for wisdom for us and doctors this week. Because Nate has a somewhat rare cancer and because he is younger than the average person with MCL (mantle cell lymphoma), we are going to get a second opinion. Our oncologist is good, but we also want to hear from a hematologist oncologist at a larger cancer center who has treated younger patients with MCL. There are a handful of fantastic cancer centers around the country and any of them would be great. We just need wisdom in picking which center we want to go to. We also ask for prayer about Nate's treatment. We need to discuss with our doctor whether Nate should begin treatment while we get the ball rolling for a second opinion or if he can wait to start treatment until after the second opinion.

Also, the Lymphoma Research Foundation has a lymphoma forum in Chicago this coming weekend. Nate and I are planning to attend as they have breakout sessions about mantle cell lymphoma. We have been doing a lot of reading and researching this weekend.

We also want to thank all of you for your emails and messages. We are not able to respond to every message, but your encouraging and caring words are so appreciated.

-Stacy

Appointment Update

We know that a cancer journey will have ups and downs. You can't really prepare mentally for the down days though. We got some hard news today. Nate has mantle cell lymphoma- it is treatable, but not curable. Most patients relapse within 2-5 years. The doctor talked about a treatment plan. He still needs to research one of the gene mutations to determine which specific chemo cocktail will be most effective. Right now the treatment plan looks like 4-6 months of chemotherapy followed by a 3 week hospital stay for a stem cell transplant.

Nate needs an echocardiogram next week so they have a baseline measurement of his heart function. I guess one of the chemo drugs can weaken the heart muscle. He will also need a colonoscopy at some point to biopsy his colon, as the intestinal issues have been the main symptom and the doctor wants a good picture of what is going on. The results of the colonoscopy will not really change the treatment plan though.

The doctor should call tomorrow or next week with the exact chemo regimen he wants to use and chemotherapy will probably begin next week.

We continue to appreciate your prayers- for healing, wisdom for doctors and us, and God's peace throughout this process.

-Stacy

Telling The Kids

Stacy and I have been putting off telling the kids much about what's been going on with my condition. They know I've been feeling sick recently and have had multiple doctor visits and even some details about what the doc's have been doing to me. We have been very reluctant to use the "C" word around them, not knowing how it would be handled. Especially since we were out of town last weekend. We had a good talk at supper tonight and they seemed pretty unfazed. I know, emotions will surely surface at some point. My mother died of cancer last year at this time, so the memories are still pretty fresh for all of us. It was just a huge answer to prayer that the kids took things in stride and were able to see that this is different and that Dad will get better.

How it All Began

Not being someone who routinely sees the doctor, I was finally pushed over the edge following several weeks of severe intestinal issues. The doc's initial recommendation was to go gluten-free for several weeks (Ugh!). But my blood work indicated a possible leukemia condition by the next day. I have since had a bone marrow biopsy and a lymph node biopsy. This last one was outpatient surgery, so the doc put in a chemo port while I was under. (Two birds with one stone, right?)

It turns out that I have a form of Non-Hodgkins Lymphoma, specifically mantle cell lymphoma. It appears to be affecting the lymph nodes in my abdomen the most at this time.

Not knowing how the Chemo will affect me, it is hard to say what support we could use most at this time. We have a team of friends working on a "helping" system and we should have that up and running soon.

I am continuously supported by my lovely wife and we are raising five awesome children together. I am a normally active person who loves being outside. I work at a nuclear power plant and am currently planning our next refueling outage.