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...


Linda Henson said...

You are something else girl. God has a plan for all of us and you and Steven are going to be find. One of these days we will be talking about this and say " DO YOU REMEMBER WHEN ?" Love you guys !!!

KateBannet said...
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Judy Richter said...

Continued prayers!

mehmet kelebek said...
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