Day 286, Graft vs. Host Disease

Well, Hunter has been poked, prodded, and tested from head to toe.  He's had tons and tons of blood tests, a CT scan of his head, chest x-ray, a lumbar puncture, 3 spinal MRI's and an MRI of his brain, a nerve and muscle conduction test and has been seen by the internal medicine, hemotology/oncology, and neurology services here at Scott & White.  Good news is that he's perfect from head to toe.  None of these tests showed anything remarkable that would be causing his symptoms.  We still don't have some results back of the LP, but none of his bloodwork shows that he has any sort of viral or bacterial infection.

After all the crazy and scary infections and his spinal problems were ruled out, they started to comb over his drug list for interactions.  Nothing there either.  When the hematologist heard Hunter was backing off his prograf (rejection med) he immediately said this is GVHD.  Graft vs. host disease is when his body recognizes that his marrow is foreign and attacks.  It can manifest in tons of different ways.  Often times it will show up as a rash, in your eyes or mouth, or in your gut.  Hunter hasn't had any symptoms that would suggest GVHD until now.  This is a pretty weird one.  I would venture a guess that none of the doctors we've seen in the past couple days have seen it before.  The current theory as to Hunter's problems is that he has GVHD attacking his hip and upper leg muscles as his rejection medicine dose decreases.  His rejection medicine essentially "blindfolds" his immune system and slows it from recognizing anything foreign.  This helps his body accept his new marrow, but also makes him more susceptible to infection. 

Here is the Hunter shuffle.  It actually looks quite a bit worse in person, especially when he is the most tired at night.  He feels perfectly healthy, just when he tries to walk his gait is very unnatural.  He hasn't fallen yet, but locks his knees and wobbles.  He looks really unstable when he tries to turn.  This is his first spin with the walker.

Giving me gray hair, this guy.

 Sleeping baby pictures make everything better, right?  Our boys are loving staying with family watching movies, eating dessert, and playing in the snow.  We picked up facetime and pictures just like this summer.

    

 What does all of this mean?  How is GVHD treated?  Steroids.  And, he is going back on his previous dose of his rejection medicine.  This is not really what we wanted to hear.  We were hoping for a quick and painless fix.  We are extremely blessed that this is not life threatening or irreversible.  His graft is still doing perfectly.  He will overcome this and go on to live a perfectly healthy life.  But, he was six weeks away from being completely finished with prograf and all the other pills that went along with it.  We saw the light at the end of the tunnel.  Our finish line just got moved further back.  Hunter will be started on 60 mg of steroids daily.  He is back to 5 prograf pills.  This high dose of steroids will cause his legs to cramp, sleeplessness, and the puffy face he just got rid of.  Hunter is not too fond of steroids. Hopefully he responds quickly to them and can get tapered quickly.  Please join us in praying that Hunter's body responds quickly to this treatment, and that he makes a fast recovery.  We got a video prayer from Benton last night.

Our spirits are still good here.  We could have gotten much worse diagnosis.  We were not expecting another hospital stay, or more time being immune suppressed.  It is disappointing.  Please pray for Hunter to quickly regain his leg function.  Please pray he doesn't suffer any long term effects from high dose steroids again.  Please pray he can stay free from infection.  Please pray our kids don't feel anxiety from us leaving town again.  We love and appreciate all of team Hanner!