Friday, July 31, 2015

Healing hands

Life is funny.  Well.  Not really.

I thought that I was struggling at home, fighting the reality that is now my life, only to find that our reality got a little more...uh...real, when Steven spiked a fever at one of his regularly scheduled appointments on Tuesday, scoring a re-admission to the hospital.

And the hospital, my friends, is where we "celebrated" his 42nd birthday on Wednesday and have spent each day since.  Apparently this year the place to be on your birthday is St. Louis.  More specifically, Barnes.

*****

Today was rough.  Today I found myself lacking any sense of peace that I had thought I had secured.

The fever that Steven is running is now believed to be caused by the leukemia.  He had came home from the hospital in June on 80 mgs of prednisone to keep the Graft Vs Host disease in check.  Once home, the doctor, when noting that the blasts in his blood had increased, had decided to start backing off the steroid at a faster rate than we had been going, hoping the donor cells would kick in and help the outpatient chemo to do it's job.  

The steroid, as it turns out, was also masking a fever that he never broke during his last hospitalization, and the reduction of the steroid was enough to allow it to break through.

So now, Steven is battling a fever, a rapid heart rate (due to fever), and recurring Graft vs Host Disease.  

*****

If the explanation of what is going on with Steven sounds complicated you can't even begin to imagine how complex the disease itself actually is.

And smart.

It learns how to adapt to survive chemo.  It learns how to adapt when you no longer eat.  It learns how to adapt to present itself as "safe" to your immune system.

It is smart enough to kill you.

A few people have offered advice and suggestions on things to do to aid in Steven's healing, and I appreciate their concern and their support.  However, some "advice" I have received has came from an individual that sadly is uninformed on the complexity of the issue at hand.  

And it is sad.

I can't imagine sitting at a computer and issuing medical advice to someone I don't know, about an issue I have no personal experience with, and shaming them for following a treatment prescribed by someone who has spent time and money educating themselves about this very disease. 

And, apparently, it may come as a surprise to some that not everything you read on the Internet is true.  

I love my husband.  You can't even imagine how much.  I fell in love with him when I first saw him. I was in the sixth grade.

No one wants him healed as much as I do.  

However, we have put our trust in God and our physician.  Jointly.  I truly believe that everyone we have been in contact with at the hospital wants my husband to beat this disease.  

God can use whatever avenue He wants to heal someone. For some, maybe it is divine intervention.  For others it is through the hands of the doctors and nurses. And for some, the healing doesn't happen on this earth.

However, I pray that Steven's healing is of this world and in this lifetime.  Regardless of your stance regarding modern medicine, the most beneficial thing you could do for our family is to pray for this too.

Sunday, July 19, 2015

What tomorrow holds

Steven is currently on his last day of seven consecutive days of chemo.  He has tolerated it well so far, and I pray that the chemo does the unexpected and puts him into remission.

****

I have struggled the past month and have  had overwhelming feelings of depression creep up on me. I increased my meds, and my prayers, and both seem to be helping.

Steven has given me comfort and he probably doesn't even know it.  It is the conversations we have, both light hearted and serious, that have made me feel stronger and more capable of getting through this.  I see glimpses of who he is, and has always been, and that gives me encouragement and hope.

Still, I wondered if, like me, he had fear that was lingering all too close to the surface.

*****

After spending the morning in an old hospital room, now converted for outpatient services, we were trying to kill time in whatever way we could. He had already had the chemo, but the blood transfusion took four hours.

It's a long four hours when all you want to do is be home.

We laughed and talked about random subjects but, seemingly out of nowhere, I felt compelled to ask...

"Steven?  Are you scared?  At all?"

Without hesitation he said he wasn't.

He shared that he, of course, wanted to live.  He wanted to see the people his children grew to be.  He wanted to grow old with me.  

He wanted, very much, to live.

However, fear wasn't part of the equation if he didn't.  He stated that he prayed every night that God would heal him and forgive him of his sins...but that he knew without question that God's will would be done, and he wasn't afraid of that.

Generally when Steven spoke about the possibility of not overcoming the treatment, or disease, I was filled with fear and anxiety at the thought of it.  However, that day, in that room, I was filled with nothing but peace at his words.

****

Our conversation that had started off so light hearted, had become increasingly deep.

Steven shared that, although he wasn't afraid, he DID wish he knew how this all would turn out.

I had just written about the very same desire.  In the moment he spoke the words, I could so clearly see the danger in knowing what the future held.

Without thinking I said, "No, you don't!"

I explained that I had prayed for the very same knowledge.  I felt the future would be so much easier IF I could only know that Steven would be ok.  But then, in that moment, I could see exactly what we stood to lose with that very knowledge: countless blessings.

I told Steven to think about what our lives would be like IF on September 5th, in the midst of the pain surrounding his diagnosis, God came to us and said, "Guys.  Really.  Relax.  Steven, you will be healed.  You will have one transplant, using your brother's cells.  Yes, the same brother you haven't spoke to in ten years. It will fail.  You will relapse. You will have a second transplant with an unrelated donor and you will eventually be cured."

I know what Steven would have done, given THAT knowledge.  Being hard headed, and stubborn, he would have REFUSED to reach out to his brother.  He would have said, "Um...thanks but no thanks, God.  I'll just skip ahead to the second transplant."  

And knowing his brother, Jammie would have refused to reach out to Steven, feeling that it wouldn't really matter in the end.

But, oh, how it has mattered!

God has unfolded a story that has yet to be completely told.  Maybe someday.

But in the meantime?  What did that "failed" transplant do?  

It changed lives.  

Steven now has a brother that he speaks to every day.  They both end the conversation with "I love you".

Steven and I both have two nephews who are incredibly kind and loving. They make Steven laugh in a way I haven't heard in a long time.

My kids talk about their cousins with pride in their voices and have marvled at how seamlessly they have came together as a family. "They just fit."

As Blake, in amazement, pointed out, my kids now have an aunt who "loves us even though she is just getting to know us".

Blake, my child who is slow to warm up to people, immediately latched on to his uncle Jammie, declaring that he was "his new best friend".  They are, in Blake's words, "buddies".

And there is so much more.

The healing that Steven has experienced since his "failed" transplant has had nothing to do with leukemia. The wounds were much deeper and the prognosis, believe it or not, was much more grim.

God healed Steven and Jammie both with that "failed" transplant.  The transplant that neither would have taken part in if God would have shown them how it would all turn out.

How great is it that we ARE NOT in charge and DO NOT know what the future holds?

If God was to tell me today that Steven would not survive this disease, what blessings would I fail to give, or receive, because I couldn't get out of the fetal position, or out of bed?

Today I am thankful that I do not know what tomorrow holds...but rather WHO holds it.








Thursday, July 09, 2015

The middle pages

I have found myself feeling, and staying, very low.  The kind of low that has you curled up in the fetal position on your closet floor.  The kind of low that makes you cry in public, randomly, and without discretion. The kind of low that clouds your thinking and inhibits your ability to do things that you HAVE and NEED to do.  Like parent.

My kids have been trying to support me and our roles have suddenly been reversed. It feels wrong and like a huge failure on my part. 

*****

I walked down our drive to our mailbox in one of the only times of solitude I have had.  We had received the phone call stating that the cancer was still in Steven's marrow only an hour or so before.  The walk was filled with tears, and prayers, as well as questions and uncertainty.  Sobs racked my body like they hadn't since Steven's initial diagnosis and there was no keeping them in.

When I raised my head I met Lakyn's eyes as she was standing in the middle of the drive.  

I had no idea she was anywhere around and I immediately felt guilty that she had caught me in such an intense moment of weakness.  She came to me and hugged me and said, "It's going to be all right".  Unable to stop what had already started I found myself admitting that it just might NOT be alright.  There was no guarantee.

In the wisdom of someone much older she told me that she knew that, but that this was God's plan.  She hugged me and said that this time was an opportunity to draw closer to God and for her daddy to also strengthen his relationship with Him as well.  

I confessed that I was so afraid of losing her daddy and by my absence during these times, losing her and Blake as well.  I wasn't able to be there each day and night, and will be separated once again. Others celebrate with them the things I should be celebrating.  It was only when I choked out, "I'm your biggest fan!" I want to be here to cheer you on!" that she admitted that she was going to cry.

But she didn't.

With the determination that was given to her by her daddy's genes, she said that she could see the improvements that he was making every day and that he was tough.  This transplant might be all he needed and if not, she believed that HE was tough enough to go for a third.

She walked me back to the house and kept her arms around me.  I went inside and to my bathroom to wash my face.  She followed me and I apologized for my weakness and selfishness.  She rubbed my back and again, in a wisdom FAR beyond her years, she told me that she knew I had so much to worry about.  "You've got daddy, me and Blake to worry about and even more things than I know, but all I have to worry about is daddy...and you."

I am trying my best to eliminate my name from her list.  

****
The last couple of days I have noticed a concentrated effort on both her and Blake's part to lift MY spirits.  They won't fail.  I will not let them.  I have to rise above this.

Blake, the child who is wired like me, even reminded me of the bright side.  He came to me and said, "A week ago we didn't know that there was any option other than another transplant... Don't be upset that we are on the road we had originally prepared to be on."

He is right.

I will push my mind to stay on track.  I have to.

The kids both made me bracelets.  One says, "Smile Mommy" and the other says "sklb❤️shelton" (representing us all).  

(The orange bracelet was given to me by a friend that I met who has also went down the transplant path with her husband.)



Even more poignant was a quote the kids had written for me on the leaf of a handmade flower.  It was a quote they had heard years ago on a Richard Petty interview (of all places) and I didn't know they had even taken notice. It is, "Don't put a question mark where God puts a period."  I am reminding myself of this daily.

Please pray that I can see the story that God has written for my life as it is still unfolding.  I am spending all my energy trying to skip to the last page, trying to figure out how this story will end, instead of living out the pages that have been written in the middle.  

*****

As I am writing this, Steven is currently receiving platelets here at Mercy.  


He will return on Monday and start chemo for seven consecutive days.  It is outpatient and an hour infusion.  I am thankful that we are at least close to home, and can return there each day.

The doctor stated that there is a small chance that this chemo could put him back in remission, but that would be a bonus, and not what they were expecting, or shooting for.  The intent is to merely keep the leukemia from exploding before transplant.  This round of chemo will be, in her words, "like water" in comparison to what he has been through.

We are also backing off on the immunosuppressants in hopes that Jammie's cells might kick back in and take over the lingering cancer for now.  However, another transplant is in our future in the next 6-8 weeks.

She didn't feel another aggressive round of salvage chemo would be worth the strain on Steven.  There is only a 10% chance that it would be effective since the last round wasn't.  She felt it more beneficial to do the seven day chemo regimine, allowing Steven to be at home and regain strength, weight and mental fortitude.  And he HAS gained weight. He is up ten pounds since June 23rd, weighing in at 123.

I have been doubtful of the results of the next transplant, simply because EVERY. SINGLE. THING. went right last time and then...the cancer came back.  We had every indication that Jammie's immune system was healthy and doing it's job, but this cancer is sneaky, and transforms and changes to fit the environment.  

How, oh how, could the next one go any better?

Dr. Jacoby assured me that it certainly could and that if they didn't believe it, they wouldn't be doing it.

I also have to remind myself of THIS daily.    

Please, please pray and ask for God to heal my husband, allowing him many more years to see the amazing people our children are becoming.

Amen.