Day 165, Working on Contentment

Last Thursday Hunter had his five month post transplant checkup in Houston.  Hunter and I drove down Wednesday evening and enjoyed our morning sleeping in and spending the morning together before his 1:00 appointment.  He checked out perfectly!  His hemoglobin was up to 13.6 and all his bloodwork looked great.  Dr. Carrum dropped his steroids to 5mg per day for the next two weeks, then 5 mg every other day for the next two weeks.  Considering he started on 120mg of steroids daily, we are so close to being done with them!  Liver numbers are completely normal, and so he got to get rid of another daily liver pill.  He showed no signs of any of his clotting issues and was cleared to shoot a gun, play golf, or any other hobby that he feels up to.  We also discussed the plan to get off his anti-rejection medicine starting at 9 months post transplant.  Once he gets off the immune system suppressing rejection medication, he can get off all his antibiotics, antivirals, and antifungals.  He will just take a vitamin.  We are blessed beyond measure.  

Hunter has come so far in 5 months.  

His strength is returning.

He has been infection free.

No sign of hemolytic anemia as he is almost off his steroids.

No sign of graph vs. host disease.

Our family is all together. 

His donor cells are doing their jobs.

And yet, still I struggle with being content in our current situation.  

Before transplant, six months was the magic number of how long we would be totally out of commission.  After six months, we could be back with our friends at church, Benton could go to school, we could start to resume a very careful, but somewhat normal life.  Well, six months is going to be here October 26th, and I had it in my head we'd get released somewhat.  We were going to trick or treat, have playdates with friends we've missed so much, and be together with our entire family.  I had it all planned out.

But, that's not exactly how it went.  Dr. Carrum said not yet.  Soon, but wait another five weeks until our next checkup in November.  I know in my head that it's just a few more weeks of isolation, but I'm still bummed.  I know I sound whiny and ridiculous, but I just feel bad that my boys are missing out on life outside our house.  Don't get me wrong, we are grateful to be home with our kids.  We have not taken for granted what a privilege it is to spend our days all together, that we can read bedtime stories, and be a witness to all the funny things they do.  Not to mention that being out and about will potentially expose Hunter to germs that we don't have to currently worry about.  So, I've been trying my best not to wish our next five weeks away and focus on enjoying what God has blessed us with.  Some days it just feels like the walls are closing in on us!
  

It's never a dull life with three little ones!

Happy Birthday Nana!

Boots, camo, and a pickup...what else does a boy need?

Playing doctor while we were gone. 

Thanks Honey for keeping our crew while we went to Houston!

Benton's reward for good behavior at the end of the day is a few minutes of "Big Game Hunter."  As you can see, it's a family affair.  It also resulted in the following dinner conversation:

Benton- "There's a gazelle." (pointing at the chandelier) 

Caleb and Clayton both immediately raise their imaginary shotguns and at the exact same time say "Boom."  

I guess it's in their blood.

I want to take a moment to thank all of those who have read our blog and prayed for Hunter.  Anywhere I go, people we know well and not very well alike mention that they have prayed for our family.  It is very humbling to share the ups and downs of this process and have so many experience it with us.  Even though we are in what feels like solitary confinement, I know we aren't alone at all.  We are a part of an amazing community with friends who continually encourage us.  With that being said, I ask yet again for prayers of protection from infection for Hunter, for patience for those of us still at home, and for Hunter's immune system to build as it should.