To my dear and faithful followers of this blog and our family's story:  Thank you for your support and love. We have received many blessings over this last week from you all--thank you.  And thank you for praying for Kev and our family.

Here is the chain of events that lead up to this point:
Kev was about half way through the Pomalidamide chemo regimen when we received a phone call that his bilirubin (liver enzyme) was elevated, and we needed to immediately stop the chemo.  All myeloma drugs use the liver in which to metabolize, so we were hoping that once we stopped it, his bilirubin would go down.  It did not.  Instead, it began to rise very quickly, making it suddenly a very serious issue.  At first we weren't sure why his liver was becoming sick, but a few tests was all it took to deduce that it was disease progression in the liver.
Within one week we transitioned from a treatment mode to a hospice mode.  Those transition days were devastating for the family as we tried to process that the cancer fight was now over and we now needed to proceed with an entirely different mindset.

Our oncologist felt that Kev had "weeks," but we really don't know how long....could me more, could be less.  Every day Kev becomes a little weaker and sleeps a little more.  The hospice doctor's first priority is to make Kev as comfortable as possible and, so far, Kev seems okay.

This is a very personal and intimate time for our family and we are coming together to support each other during this time.  It is a blessing that we have this time together to mourn and grieve while Kev is still here, and to be able to share with him what he means to us.  So many families lose loved ones with words left unsaid, and we are privileged to be able to have the time for this.

Due to Kev's condition and to respect his level of comfort, we are only having family visit at this time.  If anyone would like to share something with Kev, please leave it as a comment on this page, or, if you'd like it to remain private, please email it to me at kristinvanzanten@gmail.com, and I'll be sure to read it to him. Many of you have already done this, and you can rest assured that he has read/heard them all so far.

This time is all about Kev and making him as comfortable and peaceful as possible.  He has earned this.  He fought the fight like a warrior, and now he will receive his reward--an eternity in paradise with Jesus Christ.

The beautiful and mysterious sovereignty of God is not something to be understood.  Of course I ask God why.  How can I not?  It seems like such nonsense for my children to lose their father in this way, and at such a young age.
But we are told to write the words of God on our hearts (Heb 10:16) for times such as these when emotions cannot be trusted.  These words become our foundation, and strong foundations cannot be destroyed.  It will remain.....it will remain for something new to be built atop it.  Something beautiful that will glorify God.

I look ahead at my life without Kevin and I start to panic.  When I see a picture of Kev from "before" I feel an overwhelming pang of loss that I just cannot put words to.....it's like my insides are fracturing.

But when I look at him now, I feel so blessed to be able to care for him and serve him during this time. I pray for Jesus to give me the strength to serve Kev as He would: completely and selflessly. Although this is, at times, very difficult to do.

Death is a part of life, and we will all face it one day.  I feel blessed that it's not coming as a surprise and that we will have everything prepared according to Kev's wishes.  We won't have words left unsaid.  I'm not leading this into a cliche on purpose, but let my words mean to you what they will in this area......

Many would like to help.  Here are the most helpful ways right now:
Prayer, prayer, prayer
Gift cards to grocery stores or to-go type restaurants
Frozen ingredients for recipes that I can place in the crockpot when convenient.
**Please do not call before dropping something off--just knock and leave it on the front porch if no one comes...thank you :-)

I receive many texts and emails, I am reading them all, but may not respond.  Please know that I very much appreciate your love and support.  I'm not sure how often Kev is checking his phone, but if you want to be sure he gets something, send it to me as well.

God bless,
Kristin

I hope you all are finding some comfort during this "Polar Vortex".  I have heard it said, if you can find contentment during the inclement times you won't feel the need to keep searching for it.  For discontentment is a heart issue, not a material one.
So regardless of this weather, be rest assured that it is only a season, and it too shall pass.

I say this also in regards to our current circumstances with Kevin's illness.  We are in a season of praying and waiting.
Here is a synopsis of the last 4 weeks:
Kev was placed on steroids following the intestinal GVHD.  These steroids caused some pretty significant water retention in his "third space," which is a fancy way of saying his "tissues".  There was a point when we calculated he had about 30 lbs of water in his tissues.
As the steroids began to be weaned down, the fluid retention improved, but we noted that he also seemed to have fluid in his lungs (coughing, rattling chest).  We brought this up to the doctor, fearing pneumonia, so they began giving Kev weekly chest x-rays.  It showed there was some fluid in there, but they weren't alarmed.

 The issue was shelved for a week or so, until Kev went on a newer chemo agent called Pomalidamide.  This caused his white blood cells to drop to almost nothing, at the same time that our daughter, Claire, brought home a cold virus.  Needless to say, we all caught a cold, and Kev caught a cold plus viral pneumonia.

Of course, this type of logic never stops the hospital from running every test known to mankind, and after much testing, it was ruled that this was, indeed, viral pneumonia.  Kev became quite ill, but his vitals all remained normal.  He spent a week in the hospital, struggling to get a normal breath, but his symptoms improved and he came home.

The week in bed really sapped his level of strength and now we're working on building it back up.  He needs to use a walker for balance when he's up and moving around, and is still struggling with shortness of breath.  He improves slightly every day, and we're praying for a continual upswing.

This set-back is daunting and unfortunate, since before it happened we were working on continuing to kill this cancer.  And we get nervous when we have to take breaks from that, since it has historically moved very quickly.
We brought this concern to the doc Wednesday, who decided that it was best to start the Pomalidamide again, this time at a slightly lower dose.  She also recommends further radiation on some of the larger plasmacytomas on his back.

I think we can all agree that Kev is one tough dude, and the fact that he is still walking into the battles like a fearless soldier is pretty amazing.  I know I've said it before, but I'm very thankful for Kev's strength to continue to endure this.
So although the battle continues, we are hopeful for a miracle.  As long as there is breath in Kevin, we will continue to fight and hope that he will be delivered from this.

Sometimes, when I am truly despairing, I remember "the Saturday" sandwiched in between the day of Christ's death and resurrection.  The time his followers "mourned and wept (Mark 16:10)," and also lamented over the fact that this man was supposed to have redeemed all of Israel! (Luke 24:21).
I can only imagine how terrible this day must have been for those who loved and believed in Christ Jesus.  Someone they had placed all of their faith in, turned in and crucified.  Even though Jesus had told them how it would end (Mark 8:31), they did not understand.
Like these mourners, we know through God's word how the story ends..... yet I do not understand why this is happening.  I can only read about the amazing truth of God's promises, and find comfort in that we're not the only ones who have mourned and doubted God's plans.
God gave them that Saturday for a reason: for all of us who are in our own Saturdays....stuck in-between the despair and the glory which is to come......

God bless you all for the meals, texts, emails, gift cards, money, prayers, and kind thoughts sent our way. We love you.

Love,
Kristin

An open letter to the 'sorrowful' this Christmas:

It starts in October. We get ready for the "Hap-Happiest season of all," Christmas. The music starts playing, the ads start running, the sales flyers start coming. We put out the manger scene showing a serene and beautiful Mary hovering over a peaceful and snug baby Jesus, the animals looking on reverently. We talk about the great news of Christ’s birth, how we all should be feeling such joy and peace this time of year. And if you're not a Christian, it's just the joy and peace of the season itself.  We're all supposed to be like the little Who's in Whoville, holding hands, singing.  Presents, fellowship, happy, happy, merry, merry!!

But what if you’re not feeling the hap-happiest this Christmas? What if circumstances of your life can’t simply be covered by wrapping paper and swallowed down with the glazed ham? Is there a place at Christmas-time for sadness? Is there a place at Christmas-time for lamenting? Is there a place at Christmas-time for uncertainty?

Is it possible that the good news of Jesus’ birth has been reduced by society (and even the Church) to a “Joy to the World” cliche? Is this all there is to the Christmas story--joy and happiness?  I don't know about you, but when I think of Christmas being “the most wonderful time of year” it only succeeds in causing a struggling person to feel alienated during this season. Is it any wonder that depression increases almost two-fold during the holiday months?

But I wonder what would happen if we not only emphasized the “good” parts of the Jesus story, but also the parts that aren't so “good.” 

 Allow me to present to you some words and terms from the scriptures surrounding the birth of Christ that you won’t hear sung about this Christmas: 

Fear

Betrayal 

Divorce 

Escape 

Murder

Think about (really put yourself there!) what Mary went through when her family and friends found out she was pregnant—before she was married. 

 Think about what Joseph must’ve felt when he learned of Mary’s “betrayal.” 

 Consider the fear of being in labor with no place to birth your child. Allow me to be bold and speculate that Mary probably felt terrible about having to place God’s son in a feeding trough. 

 Imagine smelling donkey dung while you attempt to nurse your firstborn child. 

 Imagine the fear you’d feel fleeing your country because a political figure wants your child dead. 

 And imagine being a parent in Bethlehem, watching your toddler boy be slaughtered because of one man’s narcissistic obsession with power. Somehow, O Little Town of Bethlehem just doesn't seem like the right song…..

I don’t point to these scriptures because these are what should be emphasized about Christ’s birth, not at all. Emphasizing either extreme is best avoided, of course. But don’t we do a disservice to the Sovereignty of God when we fail to look at the whole story, the story that shows a whole gamete of human emotion? 

 For me, the Christmas story is ultimately about God’s sovereignty. How He orchestrated the events of Christ’s birth just perfectly, just how He wanted them. How he used Herod’s obsessive power grab, Mary’s fear, Joseph’s divorce plans, and a stinky manger, to bring about the most beautiful event in human history. We can read these few verses hundreds of years later and see the beauty of God’s sovereign plan. But for some of us, we need the whole story. We need the pain, the fear, the uncertainty, the heartbreak. We need it because we desperately need to see a God who works through them, designing something beautiful.

So if you’re not feeling like doing the jingle bell rock this year, don’t despair, God is with you. He may have you riding a donkey while you’re nine months pregnant, only to give birth later in a stinky barn with only your clueless husband to help you, but He is with you, rest assured, and He is weaving something glorious.

Merry Christmas, Hanukkah, Kwanzaa, Festivus, or whatever you celebrate this time of year. 

May the peace of God rest with you. 

Love, Kristin

Kevin is still suffering some ill-effects of the GVHD in his stomach/intestines that started a couple weeks ago.  He is on more medications now to manage it, but those meds have some nasty, unpleasant side effects.  
I wish we had a concrete and reliable measure of how much cancer killing is going on, but really, that test is the PET scan, and he can only have those every few months.  So not knowing what is truly happening inside of Kev's body is very daunting.  
He is going to work everyday, and in his typical style, battling his way through this like the badass that he is.  I'm so thankful for him and his strength.   
We're still waiting for some good news to confirm that along with this GVHD, we're getting some cancer killing done.  In the meantime, we wait.......

Go along with me on this one, and imagine this:

You're on a boat, in the middle of the night, with your friends.  The wind is buffeting the waves against your small boat, and you can feel the terrifying power of nature as you are rocked this way and that.  You desperately need to get to the other side of the lake because you're meeting your friend there, and he is waiting for you, depending on you.  
Something on the water catches your eye, and, shielding your eyes against the spray of the waves,  you see someone coming.  And this someone has not taken a boat, but actually appears to be walking on top of the water.  As the figure comes closer, you see your boat-mates pointing, their faces full of terror.  You cannot believe it--a ghost!  
But then the apparition speaks, and you realize with equal parts awe and fear that it is your friend, whom you were supposed to be meeting on shore.  
Overcome with faith, you ask if you can step onto the water with him.  He holds out his hand to you, gesturing you forward.  Boldly, you step onto the cold water.  Amazingly, you do not sink, as you take careful and cautious steps forward, toward your trusted friend.  But suddenly the brutal wind sends a large wave crashing against you, and you stumble, almost falling over.  You're sure that the water can hold you standing, but can it hold the weight of you falling?  You feel water starting to close around you and cry out for help.  Your friend is immediately there, pulling you up and back into the boat.  Terrified, you look at your friend for comfort, but he only asks you why you doubted him.  Doubt him?  You think.  It was the water I doubted.  
Hearing your own heavy breath, you realize, suddenly, that everything has gone quiet.  The wind is gone.  Your boat-mates are on their knees, weeping in praise.  This man has controlled the natural elements of this world.  With stunning clarity, you realize that doubting the water was, indeed, doubting your friend, Jesus.  

I sometimes visualize myself actually in the scenarios described in the scriptures.  It reveals to me what my true, natural tendencies are, and helps me to further understand what Jesus asks of those who those who trust Him.  The stunning thing about the above story (which is Matthew 14: 22-33) is how much faith Jesus asks us to have.  Peter was faithful enough to ask to come out onto the water, but that wasn't enough.  He had to have faith that, through Jesus, he could withstand the elements of the most unforgiving part of this world:  nature.

I want faith like that.

When I see the physical struggles that Kevin faces everyday, I feel the water coming around me.
When I read the statistics about myeloma, I feel the water coming around me.
When I see the blood tests, I feel the water coming around me.
When I see the symptoms not improving fast enough, I feel the water coming around me.

But He's looking at me, gesturing me forward, into trusting His sovereignty, his rule over all of the elements.  That he will never allow evil for evil's sake, only for our ultimate good.

Keep the faith.  Love you all,
Kristin

A few days ago, Kev began experiencing some mild to moderate digestive symptoms.  This isn't anything new, he has had these symptoms before, but this time they did not resolve like they have previously.  Instead, the symptoms worsened.
Everyone pretty much assumed it was GVHD (Graft versus Host Disease) since we knew the digestive system is a common area for this to hit, but the doctor still had to run a slew of tests to rule out infections and viruses. 
The outcome was as we expected, GVHD of the duodenum, lower, and upper intestines. 

The bad news:  The GVHD is moderately severe and needs to be put under control.  Right now his intestines aren't absorbing nutrients from food to the level they should be, so he needs to get supplements directly to his bloodstream.  A low level steroid that just coats the digestive tract isn't cutting the mustard, so he started systemic steroids in order lower the donor cells immune response. 

The good news:  The donor cells are identifying foreign substances.  This also includes--you guessed it--cancer cells.  We already see a decrease in the size of the skin plasmacytomas and one of the larger ones has actually disappeared.  This is with no other treatment! 

The "so-so" news:  We want immune response, but we don't want it to this level.  Killing cancer is great, but it has to happen at a level that doesn't kill Kev (pardon the frankness).  The inability to digest food would eventually lead to a poor outcome, obviously, so we are waiting to see how he responds to the steroids.  Hopefully they will be enough and he doesn't have to go back on serious immune-suppressants, since these would also put a halt on the level of cancer killing we're getting now.  It's a dance of the worst kind, but we're happy something is happening. 

Despite all these happenings, the doc decided to go ahead with the radiation to the affected spinal nerve in his lower back.  I'm not sure this is the best move, personally, since the radiation will go through his bowels--that are already irritated--and irritate them more.  But I'm not the doctor and they feel it's still a proactive move. 
I'm not sure at this point if we are going to go ahead still with the chemo (which is planned following the completion of radiation), it may depend on the status of the GVHD, I don't know yet. 

People are asking us if this is "good or bad."  Honestly, I think the scale tips more toward the good side, but I'll be more ready to shout that out once I see this GVHD resolve to a manageable level.  It has already improved moderately but not to the point that we can reasonably live with.

Focus the prayers around continuing to get the immune response but with a reasonable level of GVHD symptoms.  Pray that the doctors make wise decisions and that we receive continued strength and renewed hope.   We're weary, very weary. 

Someone posed the hypothetical to me recently, "so why do we believe?"  It caught me off guard when the answer I've always given: "because of the hope we have," didn't seem to capture it this time, although it is true.
A few days went by before a more comprehensive answer came:  Because I'm fully known.  He knows me truly, fully, deeply.  It is the deepest level of intimacy, completely filling and overflowing what was once a void.

How beautiful.  How amazing. 

Thanks for sticking with us.  We love you all.

Kristin

It has been determined by the doctors that Kev needs some additional chemo and radiation in order to make the fight more fair for the donor cells.  I will bullet point recent developments and the subsequent plan.

• Kev's skin GVHD has largely resolved so the docs were concerned that perhaps he was losing chimerism (the level of donor engraftment).  Test showed, however, that he is still fully engrafted, so no further donor cells will be given at this time.
• The skin plasmacytomas are not shrinking fast enough, if at all, at this time.
• An MRI showed cancer involvement in a nerve in his lower back.

Plan:

• Receive an OP chemo called Pomalidomide (technically it's immunotherapy, not chemo, since it works to boost the immune system's response to cancer cells).
• Start radiation on the nerve area that shows cancer involvement.
• Remove as much cancer as possible so the donor cells have a fair shot at working.  

The allo transplant is NOT deemed a failure just because we are undergoing additional treatment.  Ideal circumstances would've had Kev in a complete remission prior to the allo, allowing time for engraftment and immune response if/when the cancer returns.  In our case, we didn't have this, so we need to fight along with the donor cells.  

We are still fighting!!  There are still options on the table, including some chemo agents that haven't been released yet.  Kev continues to fight for his life like a gladiator and I thank God that he has made Kev so tough and resilient.  Someone without these qualities may not have made it this far.  

I am weary of this battle, as I so "subtly" indicated in my poem a few weeks ago ;-).  But a wise person recently reminded me of these words, spoken by Jesus:  if your enemy strikes your right cheek, give him your left also (Matt 5:39).  

When circumstances threaten to make me step away, I vow to make myself vulnerable again, as this is what Jesus asks of me.  It is very challenging, but if I cannot live my faith out now, under these circumstances, then what am I doing here?  NOW is the time that God has called us to, and NOW is the time that His strength shall be revealed.  

Lord, make me a vessel of your Word.  Take away my strength so others can see who truly has it.  If it is your will, please heal Kevin completely and in a way that leaves no doubt of who truly holds the power.  Take away the worldly sources that provide false hope, so that my hope rests solely in you.

Amen.

Love you all.

Kristin

We continue to fight on.  Due to the roller coaster ride of blood levels, Kev and I have decided that we are no longer going to put any faith and power in these numbers.  We have found that, quickly, they can become a false idol to bow down to.  So--I am no longer going to be posting specifics about blood levels, instead posting only when they pertain to a change in treatment course.

We have adjusted to living life with these GVHD symptoms, which are mostly skin changes and mild digestive issues.  We are grateful for no new skin plasmacytomas and continue to pray for the war being waged in Kev's body.

Overall, Kev is doing very well.  He is working daily, and, in general, sleeping better at night.  He continues to have some mild to moderate back pain, but he stays on top of it with the doctors.  He also continues with physical therapy to regain strength and general conditioning.  We are at the doctor only once per week, which is a nice thing.

There will be some more tests coming up to monitor the progress of the transplant and when we receive these results, I will do another post to update if there are any treatment changes.

I really just want to write a huge THANK YOU to all of you who have hung with us over this last year.  It is a work in progress for me learning how much to share and how much to withhold, and our wonderful support network has been so understanding.
I want to share with you another poem that I have written.  I share because I feel like regular words just aren't enough anymore.  If you care to read it, I hope it lets you in to my heart a little, and if you don't want to read it, that's okay too :-).

God bless you everyone,
Kristin

The Battle (by Kristin)

The battle is painfully long, the victories maddeningly insufficient.
What does your help look like during your obvious pursuit?
Surely your help will come how I will it!

Can war be waged amidst the white flag of surrender?
You expect a will to fight, but it must be fought laying down.  
Surely you cannot expect a victory!

How can I take up weapons to kill and yet be at peace with their fallibility?
For you smash my faith in these earthly weapons with a flick of your finger.
Where is your mercy?  Surely your mercy will come on my terms!

On my face in surrender, you forsake my permission and find a place within me where you do not dwell.
How long will you search me and find these hidden places?  Surely I'll tell you when you've received all of me!

How can I fight for life under the cloak of sovereignty?
Yes, I have prayed, "your will be done," and betrayed you.  
But surely I know your will!

My love is pierced with mistrust, thus you take me further into the fire.
I did not ask for such as this.  Surely this isn't a refining fire!

Oh, God, there seems not much left to me, must we do this?
I see where you want me, but, surely this is where you cannot be!

So here am I:  spent, broken, burned, searched, humbled.

And here is you, dwelling within a hackneyed clay pot lain at the bottom of the mire.

Yes, yes! 
Surely, here you are.