Day 482, Unexpected Part II

I've got a lot of raw emotion right now, so I'll try and keep this to the point.  

In the two weeks since Hunter has been off antibiotics, physically he has looked and felt the best I've seen him in the 16 months since transplant.  He was back to working full time, his energy level was back to almost pre-transplant levels, and his sleep was back up to 8-9 hours.  To sum it up, the boys (and me) have been thrilled to have their daddy back to "normal."  Emotionally we've been hurting for Chase and Macey, but Hunter was able to pull some of Chase's slack at the dealership and hopefully carry some of his brother's burden.  Chase has spent the last year and a half doing just that for Hunter. 

Friday was his day off work, and we spent the morning getting donuts together and tootling around the house.  Hunter and Benton took their golf clubs and headed to get labs done then to the driving range.  An hour later the nurse called back and told Hunter "This can't be right.  Come back and let's get another tube of blood."  I still wasn't really all that concerned, because his platelet count was 211 the Friday previous, and Monday he got a small Nplate shot.

But the tests were right.  The second and third samples came back with platelet counts of 1 and 2.  This was at 12:30 on a Friday afternoon.  Offices were shut down, our Houston doctors were in a meeting.  I was trying to keep calm for Benton, but started packing for Houston.  My sweet six year old asked "Mom, does daddy have to take the medicine that makes his hair fall out again or the one that makes him really tired and sleep in the morning?  I don't want you to be gone to Houston again."  While I could reassure him about the chemo, I hate hate HATE that Benton knows what high steroid dosages mean for our family.  Nana came and got the boys for the weekend, and I sat with Hunter in the transfusion room in Abilene while he got his platelet transfusion.  We talked to Houston and they told Hunter to go back up on his steroids, take it very easy, and see where we are on Monday.

After a very restless weekend, today's numbers were up to 22.  I felt like I was able to breathe for the first time in three days.  22 is not great, and far from normal, but he didn't need a platelet transfusion and got an increased dose of his Nplate shot.  He was cleared to go to work {in our Nurse Practioner's words so he doesn't drive us all crazy} and will come back for more labs Thursday.  He is back to 60 mg of steroids, back on the antibiotic, and back on the strong anti-fungal since steroids carry a risk of infection.  I am so very thankful that his platelets went up.  

Friday night was Erin's birthday party.  Happy 25th E!  It was a happy distraction for us all.  Erin and Michael are a blessing in our lives.  They have stepped in time and time again to help our family.  Macey will be on house arrest and under strict orders not to lift a single thing the rest of her pregnancy.  Erin is rearranging her work schedule so that she can take care of Macey and Hudson at their house while Chase is at work.  They are going to be great parents someday, and are adored by four little nephews.  Uncle Michael is also quite a bit of fun at the pool.  Don't worry, Caleb and Clayton were loving every minute of these videos.  

 Before the his platelets bottomed out.....

Excuse my unmade bed....keeping it real.  Hunter sometimes has to "help" them pass levels of Big Game Hunter.

donut dates with daddy

admiring Poppa's dead bull snake

Clayton was testing his four wheeler skills....the verdict is that we are going to stick with the power wheels for now.  Watching Hunter run behind holding the kill engine cord is highly entertaining;)

We loved every minute of our church VBS musical-especially the part where they were given horns to yell into

Team Hanner has been cranking out the bike miles for daddy.  So far we are 49 miles in toward our 100 for Hunter goal.  I'm working on more details for our big group bike ride, but save the date of October 25th for a fun 5 mile neighborhood cruise that morning to celebrate all that Hunter has overcome.  We are all glad to see Ernie's face back from Tennessee. 

 Also, I signed this big boy up for Kindergarten last week.  He is going to love it.  And we will miss him being home.  We school supply shopped and went on a lunch date after registration.

It would be a lie if I didn't say that Hunter and I have had a case of the "Why me's" this weekend and are wondering what we have done wrong or what we need to be doing better to be done with setbacks.  In my heart I know God shows great mercy on us and that we don't get what we truly deserve.  But this feels like punishment.  I wish we could just go back two weeks and our entire family got a redo.  After the high of our last Houston visit where he got off the antibiotic, we are both struggling with anger and frustration at where we find ourselves now.  It has been a hard two weeks.  Please pray for our attitudes, faith, and perseverance to weather this storm.  It is maddening to feel like we are going backwards when we are so far out from transplant.  Please pray for us.  Pray for platelets.  Pray for protection from infection.  Pray for Chase and Macey.  Thank you from the bottom of our hearts for sticking with us for the many months we've struggled with transplant.    

On repeat in my mind today:

²⁸ “Come to me, all you who are weary and burdened, and I will give you rest. ²⁹ Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ³⁰ For my yoke is easy and my burden is light.”

Matthew 11:28