Sunday, May 24, 2015

Heavy Hearts

This has been a tough ten days.  Make that 11. 

Steven went to the ER last Thursday because of a fever.  I woke up next to him in bed, feeling the heat radiate off of him.  My first thought was an infection.

So was the doctor's.

However, in Springfield, the doctor wasn't familiar with the regimine, and expectations for someone following a stem cell transplant. After determining his kidney function was off, and believing it to be a kidney infection, he mentioned, almost in passing, that there were immature cells and blasts in his blood.  He even stated, "that's probably expected, right, with what you've been through?"

I knew it wasn't, and the life drained from my body.  

After a frantic 8 am call to Dr. Jacoby in St. Louis, she herself called me back and spoke with me.  

Steven would be taken by ambulance to St. Louis and tested further and treated.  

****

By the weekend it was determined by a bone marrow biopsy that the leukemia was back and 50% of his marrow consisted of blasts.

Chemo started two days later.

So, today, I find myself back in a hospital room, watching my husband fight, but without the vigor he had before.  The strength of his body had been reduced considerably after the last transplant, and now, adding more chemo and knowing there is another transplant on the horizon is frightening.  

My heart is also heavy with the knowledge of what this does to our kids. Last night, in a moment of honesty, Blake started crying for the first time since learning that his daddy's cancer was back.  

"I just want to go home.  I don't like St. Louis.", he said.  

I held back tears but my mind was screaming it's agreement. 

I told Blake that he had family back at home and they would love to see him and that he could go home at any time. One look at his face and I knew that "wanting to go home" was more about going back to a time before he had the knowledge, or fear, that his life now holds, and less about a location.

*****

I took an opportunity and gave the kids a pep talk, which was as much for me as it was for them.

I reminded them of everyone that loves them.  I reminded them that God was in control and that all things would work for His good...whether we could see it or not, and I reminded them that we were a family and that we were in this together.

They were not alone and they never would be.

That was my vow.  Regardless of what happens, THEY will NEVER be alone.

****

So today, as I sit in this hospital room, I listen as the kids make and race paper airplanes.  They sound happy.

I look at the wall and see pictures that they have drawn reminding their daddy how tough he is, and to cheer him on. I smile at their use of the word "ain't", a word they know I detest and a word they think solidifies their "country-ness" in this big city.



And I use these things to remind myself that life goes on.  Even if "life" looks a lot like the inside of a hospital room.

****

Please continue to pray for our family.  This is such a rough road, and it's rougher each time we go down it.  The disease has shown it's persistence and one transplant has already failed.  

You can't have unlimited transplants.  

The doctor mentioned that she believed, that this facility had done three transplants at least once before and that not many people can physically handle it, so it's generally not an option.  And I don't know whether it's one we would even be given.

This transplant has to work.

Please pray.

Also, my family has experienced another loss, and I am the only one who knows at this point.

Rowdy, Steven's beloved dog and long time companion, passed away Friday night on our front porch.  My cousin found him Saturday morning.  

He had lived a long life; Our kids have never known life without Rowdy.

Although he had began showing his age, he was still very active. I can't help but think that Steven's absence played a part.  



Rowdy's heart, like my own, was heavy.  

So, as I sit in this hospital room, and watch the kids throw paper planes at each other, I try and think about when, and how, I can possibly tell Steven and the kids, that Rowdy won't be waiting for us at the end of the drive when we get back home. 



Friday, May 01, 2015

Weekly labs and daily prayers

Tuesday we made our way back to St. Louis for Steven's monthly check up.  I was relieved at the timing of this visit, since he had been battling nausea and vomiting the week before. 

Prior to our visit the doctor had suggested eliminating the high dose Vitamin D from his daily line up of meds, as well as bumping his prednisone dosage back up to 10 mg to see if he improved. 

He did.

I held on to the hope that it was either the Vitamin D that was the culprit, or a fleeting virus, because the thought of tapering the prednisone back down had me in tears.  We had made it to 3mg and I thought I could see the light at the end of the tunnel.

I was wrong.

At his visit on Tuesday, when comparing the lab work from the previous week to the labs taken that day, a prior spike in his eosinophils, followed by a dip in his platelets, pointed to a flare up of Graft VS Host Disease. 

The physician decided to start gradually tapering off of the prednisone (again), in the hopes that by the time we reach the 3-4mg level, Jammie's cells will have calmed down a little and Steven's stomach will be able to handle the adjustment more smoothly this time around.

*****

I took the opportunity Tuesday to ask the physician about the role that the chromosomal rearrangement played in the stem cell transplant, and if the hope was that the mutation would also be prevented by the procedure.

In short, the answer is yes.

However, the discussion lead to me leaving the office with a heaviness in my heart.  You see, as I have mentioned before, with each bone marrow biopsy we are given three pieces of information.  We are told whether or not there is "active disease" (cancer), how much of the marrow is donor engraphed (we pray for 100%), and if the genetic mutation, and chromosomal rearrangement, is present.

Since transplant, we have always received the best news on all three.

I knew the importance of being free of cancer, as well as the importance of being fully donor engraphed.  However, although I knew that not having evidence of the chromosomal rearrangement was HUGE, I didn't know if the rearrangement was something that we should expect to see again, or if the thought was that the transplant would take care of it.

What I found out is that the study searching for the mutation is more sensitive than the study searching for the cancer.  Steven could, essentially, be free of cancer, but have the rearrangement (Inversion 3) present.  If that was the case, the rearrangement is basically indicating that it will be developing into cancer.  It is cancer at it's earliest stage...before it is even classified as "active disease". 

The hope is that Jammie's cells will recognize the foreign cells and prevent their return.  Even cells that aren't fully cancer yet. It has been the purpose of the transplant all along, and I now had a greater understanding of it.

However, it was the physician's demeanor, once again, that set me on edge.  In speaking with her, I could not help but pick up on the fact that she didn't seem very optimistic about the transplant doing it's job.  It wasn't what she said, as much as her avoidance of saying what I wanted to hear.

She did not put her negativity into words, and I have to focus on that.

She stated that, if the mutation became evident, there were avenues to take before the transplant would be considered unsuccessful, and I have to focus on that.

And, as of today, day +142, we have had nothing but good reports, and good news...and I HAVE to focus on that.

It is a constant battle and I find my mind shifting from today, towards the future.  When I look ahead, all I see is uncertainty.  When I look ahead, I am consumed with fear, and "what ifs?".  When I look ahead I wonder how, if I had to, would I make it on my own?  What about the kids?  Will we end up alone?

 And all the questions bouncing around inside my mind makes me, literally, sick.

I hate the way my mind works.

I have been reminded by many, although I am already very aware, that none of us are guaranteed a future.  Steven doesn't have this market cornered.  My occupation alone keeps me aware of our mortality.  However, I have been holding my breath since September, waiting for someone to tell me that it is all going to be ok, and that Steven's future holds no more risk than anyone else's.... and that isn't going to happen.  They can't tell me that.  And I am getting light headed and weary from not being able to breathe.

No one knows what the future holds.  Only God.  And I have to make peace with that.

*****

As I laid in bed beside Steven last night, despite my best efforts to keep my emotions in check, tears rolled down my cheeks.  He gathered me up to him and comforted me and I felt guilt that I was being comforted by the one I should be comforting, and anguish at the reminder of all I had to lose.  He whispered, "I thought we were past all this...", and I knew that I must have been doing a better job of hiding the anxiety that is always present than I had thought.  With bravery that I don't have, and bravery I can't imagine, he reminded me of the marvels of modern medicine, and the miracle of how far he had came.  He also gently reminded me that worrying didn't solve a thing and God was always in control.

And he is right.  And I pray for the day that I can get "past all this..." and I can start living this life that I have been given.


*****

Steven was due to have another biopsy around the +180 mark.  The doctor said two weeks wouldn't make a difference, and in order to save us a trip, they scheduled his next biopsy on the same day as our next appointment in St. Louis, in a month.  Until then, we will continue with weekly labs and daily prayers.

We always appreciate your prayers as well.