A year and one month ago was Clark’s allogenic transplant. His second birthday. His new chance at life.  A journey that was so intense, completely unpredictable,  physically painful and exhausting,  and emotionally taxing.  A nail biter that  led to heart pounding fear and worry.  A process that would literally bring him to the brink  and, thankfully,  back again.   

I never wrote about the transplant  day specifics but I now feel I can share them given that we are so far out from that day.  I arrived on the morning of April 6th with a cupcake, balloons and a big “0” that I taped onto the wall. Transplants are given on day “0” after a seven day chemo countdown. His cells were due to be transplanted in the afternoon and the nurses said that it would be a fairly uneventful process .  It would be a few days before the effects would appear.  So, we ate the cupcake and tried to embrace this second birthday as best we could.  About an hour into watching these tiny cells  march into his system , Clark’s eyes looked funny and I started to get the sense that something was off.  Within seconds of sensing this, the panic set in.  Clark began shaking so uncontrollably that he had to try and hang onto the bed rails so he wouldn’t fall off the bed.  Then his monitor went crazy - his blood pressure was off the charts high and all his vitals were going haywire. The monitor was beeping uncontrollably and flashing red. I got up and out of the way as there were caps flying off the meds the nurses were administering through his port. It was chaos as they were rushing around in and out of the room. I was like a dear in the headlights completely startled and  completely confused. The nurses were great but I could tell they were caught off guard  with this unexpected reaction.  After a while, the meds kicked in and his blood pressure normalized, the shaking was controlled and they proceeded with the transplant.  About an hour after the transplant had finished a fever set in.  And so began his journey with his new cells and the unpredictable nature of an allogenic transplant.

Here we are, a year out  from that day and I’m happy to report that we just returned from a wonderful and much need vacation!  Clark still has elevated liver enzymes (still on a steroid) but they are not affecting his daily routine and the worry about severe complications have melted away.  He is leukemia free  and one would never know,  looking at him today,  what his body has been through. As his wife and caregiver, I couldn’t be happier to be where we are today.   As his medical care will continue for years, there will always be anxiety on blood draw days and  learning to cope emotionally in between appointments as well. We are getting there one day at a time. 

This was a life changing event for our family.  I won’t lie, it was a doozy.  One never knows how they will react when faced with a deadly disease. Roles shift and outlook changes. We will never look at the future in the same way.  Faith is tested.  It’s a scary chapter in a marriage. We will forever be changed  -  some for the better and some for the worse.  Yet, we are  profoundly connected by this deep experience . Our faith restored and deepened.  We move on and try not to look back.

Writing these posts were extremely cathartic for me.  I realized that story telling was an important part of how I could manage. I poured over other’s stories as well and it helped to read  about differing perspectives, challenges and outcomes as no two transplant patients are the same.  

Thanks to all who have hung in there with us, cheering us on and encouraging us.  It’s a terrific feeling to sign off on a high and positive note.   We’re getting ready to take a road trip with Avery and Jillian out to Glacier National Park where we will leave Jillian to pursue her summer job.  Can’t begin to tell you how nice it will be for the four of us to drive off on a new adventure- one that is far, far away from a hospital! 

I’ve included  some pictures of us on vacation- of course, Clark had to rent a brand new corvette ! 😀

“God knows what’s just around the corner. It’s worth the wait.”

❌⭕️ Clark & Allyson