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.

1 comment:

Jordan Carroll said...

I pray for you guys each day when I look at my dresser and see the framed verse Psalm 56:8. It brings me a lot of comfort in the dark. Don't lose your light. You are not forgotten.