June

Hunter's checkup Monday went well.  His platelet count was 107, so up a little.  They went ahead and gave him another marrow stimulating shot, and reduced his steroids to 40 mg.  He is going to get bloodwork once a week instead of two, and we don't have to go back to Houston for another 3 weeks.  All such good news.  We are so so relieved that he has turned the corner on platelet destruction.  This particular setback has been very difficult mentally on us.  

The month of June brings about all kinds of memories of this time last year.  

On this day one year ago, Hunter's transplant went from run-of-the-mill to complicated over the weekend.  He had sailed through 8 days of intensive chemo around the clock, hell week with no immune system, engraftment, and was on track to be home to Abilene in a few weeks.  It was tough physically, but he rocked it.  Hunter was a model patient.  We had just been told to start living life again.  He was 100% donor cells and able to kill bacteria for the first time in his life.  Then June 4th, 2013 happened.   The bottom just fell right out of our "gameplan."  Hunter was re-admitted to the hospital very sick.  I knew it was the beginning of June that his hemolytic anemia struck but wasn't sure the exact date.  I went back and reread my blog post about that day to check.  So naive.  I had no idea what was ahead for us.

I can't even begin to describe how truly awful it was to watch.  I glazed over a lot of the details on my  blog, but I will never ever be able to forget the gray lifeless color of his skin, the yellow of his eyes from an overworked liver, the sounds of the dry heaving any time he was moved, or the unbelievable coca-cola color of his urine that was all his red blood cells he was destroying.  The feeling of terror to not understand what was going on or how long it would be before it got better.  The helplessness that came from hearing the blood bank did not have the blood that would be a good match for the antibodies in his body.  The phone call to Abilene telling Mark and Jana that they better come as fast as they could.  It felt like I was watching him die before my eyes.  In our family, when you say "June" it means the absolute pit of despair.  Hunter has almost no memories of June.  He completely checked out mentally.  Just even writing this post makes me nauseous.  And really it only got worse in the weeks to come.

His bleeding out his IV, nose, rectum, and every other opening in his body.  

His clots causing both his arms to swell to gigantic proportions from the IVs, chest catheters, and PICC lines. 

His groin line.  

120mg of steroids daily.  

Constant leg and foot cramps.  

Nausea constantly.  

Being confined to bed.

Hearing his hemoglobin every morning about 4 a.m. and crying myself back to sleep most days.  

Chase and Mark carrying him to the bathroom because he didn't want to use the bedpan.  

Watching him shrivel away to 105 pounds.  

A stomach so shot up from blood thinner injections I couldn't find a place not bruised.  

Gathering around his bed every night and laying our hands on Hunter begging for healing and strength to continue.

And by God's grace we got our miracle.  Not everyone does in BMT world, so we know exactly how fortunate we are.  Blood donations and prayers poured in from friends and strangers.  Hunter slowly started destroying less and less.  Eventually he recovered.  Even though it's been a year, to hear his antibodies are destroying still strikes fear into my heart.  But it also makes me grateful for this year.  We are home with our boys, celebrating the summer that we didn't get to spend together last year.  So while I wish we weren't dealing with setbacks and Hunter was just taking a vitamin, I don't take for granted where we are today.  Benton got to spend the semester in a fabulous Pre-K program and is more than ready for kinder next fall.  The boys are back among other kids at bible class and playdates.  We get to watch Benton play baseball.  I got to tuck three little boys into bed tonight after a morning spent swimming with friends.  Hunter feels as good as he's felt in a long time.  We are even more grateful for what we have because of last June.  Bring on the summer fun, however exhausting it may be!  

Celebrating daddy's big platelet jump

Celebrating our Pre-K Graduate

Celebrating Summer with a campout

Team Hanner, we ask that you continue to pray for platelets, specifically that he is in the normal range soon and can maintain as his steroid dosages are decreased.  Hunter's antibodies have worked overtime for 31 years now, and I pray that they can just calm down and get along with his new and improved marrow!