Tuesday, June 30, 2015

This little light of mine...

It goes without saying that I have never experienced an emotional rollercoaster like the one I have been on since September.

I remember a nurse saying there would be highs and lows, but I was too ignorant of what was ahead of us to appreciate the truth in what she was saying.  I think that with any cancer diagnosis, there are lows.  That's a given.  Many times, in the midst of treatment, there are highs.  However, when you add in everything that life throws your way, those highs and lows get even higher...and lower.


I felt the blood drain from my face as I looked at him sitting only a few feet in front of me.  People were arriving to the party, ready to celebrate Blake's birthday with us.  As people laughed in the background, all I could hear was Steven's words.

A few minutes before he had told me that he felt especially tired and drained.  I couldn't imagine him feeling anything but.  However, as the time passed, he pressed upon me how bad he truly felt, as he explained that he felt like his body was just shutting down on him.

My fear was palpable.

I told him that if he truly felt that way, we needed to head to St. Louis right away and make sure that his blood work was within a normal range and that nothing, such as infection, had started to take hold.  I was scared.  Terrified, in fact.  

He told me he wasn't going.

It seemed obvious to me that if he felt as if his "body was shutting down" that going to the hospital was an absolute necessity, and I told him so.

He looked at me and said, "I am not going back."

I,  being completely incredulous, said "are you just going to stay here and die...?"

There was NOT ONE fiber of my being that was prepared to hear him say, "yes".

I felt my ears start ringing.  I remember looking out the front window and seeing the kids playing ball in our front yard.  I thought about Blake and how, like every 10 year old, he was so excited about his birthday and all the celebrating that it brought.  I watched as Lakyn laughed and caught a ball that my cousin had thrown, everyone oblivious to the conversation that was happening at the dining room table.  Everyone except Jammie, Steven's brother.

I looked at him. He was scared and I was too.

I looked back at Steven, and he held my gaze, not backing down.  I started crying.  I couldn't believe that Steven, my rock and the most positive and determined man I knew was threatening to throw in the towel. 

I looked back at Jammie and said, "help me".  I could tell that he didn't have the words, as he was fighting to hold it together himself.


We ended up going to St. Louis that night, and on the drive there Steven apologized for his earlier declaration.  He was adamant that he didn't mean what he had said, but was exhausted with being away from home and missing so much that life has to offer. I knew what he meant.  I was exhausted too.  I didn't want to spend Father's Day and Blake's birthday spending the night in a hospital either, but I was desperate to spend my future with Steven by my side.  Although, I didn't want him to feel guilty for feeling like he had reached the end of his rope, I didn't want him to lose sight of all he had to lose. What we ALL had to lose.

So, we talked about the kids.  We talked about our future as a family.  We talked about how much the whole situation completely stunk.  That night I even said the words I swore I would never say, "It's not fair!"

As soon as I said them, I regretted them. 

Of course it isn't fair. Life isn't. One walk over to the Children's Hospital and that fact will never leave your sight.

In fact, instead of lamenting how life isn't fair, we decided we should be celebrating it.  If we got "what was fair", how different would our life be?  Namely, if God gave us what was fair, we would have NO reason to push on.

But life isn't fair.  And aren't we lucky it isn't? 

As we drove to St. Louis we thought about all the blessings that we had. The fact that my kids were staying up "late", celebrating the arrival of Blake's hour and minute of birth along side Aunt Sissy and Jason, laughing and happy, was a blessing.  The fact that our family stayed at the house, even after we left, making sure that Blake's birthday celebration continued, was a blessing.  Having so many people lifting us up in prayer, was a blessing.

And there were more.

Many, many more.

How lucky are we that life isn't fair?


Today we saw Steven's doctor for the first time since his discharge from the hospital.  The old familiar sickness that settled in my stomach before each appointment was still present.

However, today's visit was filled with much more than we had anticipated.  We arrived knowing that we had a repeat bone marrow biopsy ahead of us.  I also had planned on discussing with Dr. Jacoby how we could assure that Steven did not lose additional weight during the next transplant, since he had lost so much during the last round of chemo.

What we learned today was that we are still, very much, on that roller coaster.

Apparently, yesterday, Steven was the topic of several BMT physician's round table discussion.  The discussion was a lengthy one at that.

It has been decided that after reviewing his "case" and taking into consideration the strong occurrence of GVHD (Graft Vs. Host Disease) after receiving the boost of Jammie's cells, that IF today's bone marrow biopsy shows that Steven is currently in remission, then we will hold off on going to transplant.  The GVHD was a good sign that Jammie's cells are also exhibiting Graft VS Leukemia, and there is a 30% chance that the boost alone will keep Steven in remission.

Granted, 30% isn't ideal, BUT, before today we thought that there was a 100% chance that we were going to transplant in the next 4-6 weeks.  And now there is a 30% chance we will never have to go to transplant again.

We will take it.

IF Steven relapses, or the cancer is still taking over his marrow, then we will proceed forward with going to transplant. However, even the transplant scenario is looking up, IF we have to go down that road again.  After the doctor conducted another registry search after Steven's relapse, TWO 10/10 donors were located! The potential donors have submitted their blood samples to be worked up, showing they ARE willing to donate.  One donor is 20 years old and the other is 40, and both would be very viable donors.


I pray that we never have to go down the transplant road again.  I realize there is a 70% chance we will, but God has worked with worse odds.  I am thankful that there is a possibility for Steven to regain some health if Jammie's cells only keep the cancer at bay for awhile.  But, like I said, God has worked with worse odds and maybe Jammie's cells will be the only cells we ever need.

I ask that you pray this is the case.  Please pray for the cancer to be absent from his marrow and for him to have a lifetime of remission.  His labs today showed 1% blasts.  Pray that this was simply immature cells and not cancer.

After so many months of prayers for Steven's healing, I wonder if the prayers are becoming redundant to God.  But, who knows, maybe, just maybe, the squeaky wheel gets the oil? 

This past week I read Before Amen by Max Lucado.  I guess I was trying to find some evidence of hope and answered prayers.

I wasn't disappointed.

One specific story told by Max stood out.  It was of a cowboy at a rodeo.  That alone seemed fitting.  His name was Freddy Vest.  Max shared how Freddy was participating in the calf roping when he fell off his horse.  He was "dead before he hit the ground."  A nearby friend ran to him and held his head and immediately began to pray.  So did the person administering CPR. 

Before long, the whole audience at the rodeo was lifting prayers on Freddy's behalf.  Over 45 minutes later, en route to the hospital, Freddy's heart began beating again.

Freddy recounted his experience by saying, "I was with the Lord", and told of the indescribable peace and love that he felt.  At this time he was able to actually SEE the prayers being lifted to Heaven on his behalf.  He stated, "God allowed me to see the prayers that came up for me.  It started with one bolt of light.  And then there were two bolts of light and three.  Then there was ten.  And then there was, like, hundreds, and then there were thousands of bolts of light.  Each one of those bolts of light was a prayer that someone had sent up for me.  And when there got to be so many bolts of light, it exploded into the brightest light....That's when God sent me back."

(Freddy recounts the full story in Freddy Vest, The Day I Died: My Breathtaking Journey to Heaven and Back)

What I am asking is for you all to help me fill Heaven with bolts of light, until prayers for Steven and his healing explode all across Heaven. 

After all, it seems fitting that prayers be described as bolts of light, because your support has been a light to Steven and I during this darkest of times...

Tuesday, June 09, 2015

Baby steps

Today was the day that we were to be celebrating Steven being 6 months cancer free; his six month re-birthday.  However, it was not to be.  This round of chemo has been harder than the others on him and the recovery has been slower. The boost of Jammie's cells gave him an almost immediate resurgence of Graft VS Host Disease.  The doctors were in disbelief that it came on so soon.  The rash, and gastro-intestinal issues were back with a vengeance, and he had a fever to go along with it. 

After there was no denying that it was the GVHD, even though the timing seemed impossible, they began treating him with steroids (140 mg of prednisone, and another I don't even know), as well as immunosuppressants:  tacrolimus and cellcept.  The improvement came about almost as quickly as the symptoms.  However, he is still far from back to normal.  He has yet to eat anything and is only drinking small sips of water, or Gatorade, throughout the day.  But, looking at the bright side, he is now up and walking and a few days ago, I wasn't sure when he would feel up to that again.

I will admit, this round has been harder on me too.  I'm scared.  The leukemia has shown it's persistence and when I look into the future, I am scared at what it might hold.  In fact, right now I avoid looking into the future at all.  We had planned a trip this summer that isn't going to happen, and we had planted a garden that we were excited to see grow.  Those things that I had allowed myself to look forward to were in the near enough future that I thought it was "safe" to at least let my mind go there.  I was wrong. 

I know that none of us are guaranteed a future.  There is no need to remind me.  I recognize every blessing that we continue to receive and I say a prayer of thankfulness for them.  However, I can't pretend that when Steven presses his forehead to mine and tells me he loves me, that I don't wonder how long I have to hear those words from him.  I see him break down, not because he has cancer, but because he wants so much more for his family, and it tears me apart.

This isn't a pity party that I am throwing for myself.  It is just me coming to terms with everything that makes up my life right now.  I know there is hope.  God gives us that.  Silent prayers make up most moments of my day and I recall the words that Lakyn wrote on the board in Steven's room, "This is all God's plan." 

My focus must remain on that right now.


There is still no timeline for transplant.  We haven't spoken to the doctor since last week.  Right now, we are just taking it a day at a time, looking for each small sign of improvement that tells us we are headed in the right direction.  And we have had them.  The difference in Steven from Friday until today is pronounced.  Again, he is nowhere near where he needs to be, but he is equally as far from where he has been.

Please continue to pray for us all and for us to embrace and accept God's plan...whatever it may be.

Wednesday, June 03, 2015

Because I don't know the plans...

A couple of months ago I was mowing the yard and marveling in the "normalness" of the activity.  I thought about the roller coaster of our life, and how many things had changed since I had mowed the yard last year.

As I looked at everything that had happened: the diagnosis, the persistence of the leukemia, the transplant, and the ups and downs of recovery, I could almost see the VERY reason each of the trials had happened, and all the good that had came from the horribleness of the disease, and the ways that it had strengthened our faith.

And that scared me.

For those of you that know me, you won't be surprised by that.  I'm always waiting for the "other shoe to drop".

However, aside from the now expected uncertainty that will forever cloud our lives together, I found myself thinking about the bigness of God, and His plans.  The very fact that I thought I could almost make out the path we were heading down, and why we hit each bump along the way, made me doubt that I even knew what road we were actually on.

And, as it turned out, I was right.  I didn't.

I don't believe God works in a way that someone as flawed as me could decipher and solve.  His ways are much bigger than mine, as is His understanding. As I told kids after Steven's first diagnosis, we may not know the reason for our suffering and pain until the day we are face to face with God in Heaven. 

I keep reminding myself of this.

Over and over.

Sitting in this hospital room, watching my husband, face and chest bright red from a reaction to an antibiotic, struggling with a fever than has all but refused to go below 102.9, has, at times, required me to look deeper for the blessings and be mindfully conscience of my thoughts, but, always, when I look, the blessings are still there.

Seeing the (already too thin) man I love lose 10 pounds in two weeks, unable to eat or drink anything, reprimand himself and vocalize that he is "disappointed in himself" because of his inability to rise above his current condition and do it for his family, pushes me to seek God and ask for His healing, acceptance and peace.  Mental, and physical.

And He is here.  In this hospital room.  My mind has had to work harder to recognize Him at times, but my heart knows He is still here.  And He will continue to be.

Recounting to the nurses all the blessings that so many of you all have showered on us, feels like a way to make Him visible to others, and allows me to see Him more clearly myself.  It's also a good reminder to us both that we aren't alone and that so many are praying for Steven's healing and praying for strength and discernment as our family travels this road we've been called to walk. 

This walk, our journey.


Currently, the plan is to go to transplant as soon as possible.  This means that, at the very least, we will be home for a couple of weeks prior to returning for transplant.  We could be home longer, but that would mean that we were waiting for the donor to complete things on their end.

And, yes, right now it looks like we have a donor. 

We don't know who, or where they're from, but we do know that initial tests show that they are a 10/10 match for Steven.  They have been notified and have already submitted the follow up blood work, which will be used for confirmation, to the lab.  Dr. Jacoby was impressed by the timeliness in which they had already gotten the initial sample to be worked up.  This shows us that 1) They have been located, 2) They have been notified, 3) They are agreeing to donate, and 4) They have been prompt at their response to the need, thus far.

Thank you to all of you who swabbed for Steven.  Although you might not be his match, you could be someone else's.  Someone who has a life, and a family, and people who love them.  Someone who could be waiting on, and depending on, someone on the donor registry to give them a chance at life. If you haven't joined the registry, I would highly recommend you consider it.  Our eyes have been forever opened to the need.

I know of one person who joined the registry after Steven's diagnosis that has already been notified that they might be a match for someone else.  Steven and I both view this as a HUGE blessing that has came from his diagnosis. 

Maybe in our darkness, someone else has found their light.

I recently read the book, "The Butterfly Effect".  It is short and sweet, but gives a very interesting up-close look at how all our lives are intertwined and how every decision we make impacts someone else.  After reading the book it made me wonder about all the chain reaction blessings that have happened, just because our lives took a turn down a road we would have never chosen.  I can see so many blessings... I wonder how many I won't ever know of? 

This is the thought that keeps me going.  

Knowing that there is someone much bigger than me at work, whose mind I will never know, keeps me from getting consumed by sadness and self-pity. 

It also makes me thankful that I don't know God's mind and what lies ahead.  I am just called to trust that whatever detour we may take, our final destination remains the same, and that God himself will get us there.

Jeremiah 29:11  (NIV)
    "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."


I want to leave you with a picture depicting the joy that came with a generous gift given to our family.  Webster Electric received four St. Louis Cardinals tickets for the Monday, June 1st game.  Instead of raffling them off, or having a drawing, the employees decided to give them to us.... or, more specifically, the kids.

My initial plan was to have someone take them while I stayed with Steven.  The kids, however, begged me to go with them and Steven was determined that I do just that.  So, with my cousin Julie joining us, my kids experienced their first Cardinals ballgame.

Blake was in heaven, and Lakyn wouldn't take her eyes off the field for fear of missing something. 

Once during the game, a foul ball barely missed my outstretched hand (I was too slow to realize what was happening and actually stand up), and bounced off the hand of the gentleman behind me.  Blake, having already formulated a plan if a foul ball opportunity presented itself, was completely disgusted with himself for being so "distracted" by his cotton candy that he failed to carry out his plan of taking off his cap and snagging the ball out of mid-air.

He soothed his pain by eating more cotton candy.

Again, thank you to all of you who have made life with leukemia, and life away from home, much less bleak.  The joy on the kid's faces was so good for this momma to see and the best medicine I have received in quite a while.