June 26th, Day +61, Community

Hunter has had a great couple of days.  He last got a transfusion Sunday.  His hemoglobin was 8.4 Monday, and has held on its own at 8.1 for the past two days.  His hand and wrist are back to normal size, and he just has extra fluid in his elbow.  He has been cleared to walk, and sit up in chairs around the room, which feels like a huge victory.  His port has held up perfectly.  At rounds this morning, his doctor told him he was 100% better than this time last week.  Those words sure sounded good.  

Tomorrow Hunter's steroid dosage will decrease.  This is exciting news.  Long term high dose steroids can have some nasty side effects.  To be perfectly honest, it's nerve wracking to start of back off anything that helps keep his antibodies in check.  We are trusting and praying for our doctors as they begin adjusting all his meds.  If things go all as planned, we will be out of here Monday when we finish his last dose of Rituxan.  After 4 doses of this drug, his antibodies should tolerate his new graft much better.  We will be closely monitored at clinic, probably three times a week.

As I look back at the second month of our BMT journey, I am struck by how days 30-60 have differed from our expectations.  We felt like we had made it at the 30 day mark.  Hunter whipped this thing!  We were in the RV, had just had our central line removed, and were getting by just fine without it.  Mark had headed back to Abilene, and Jana followed a few days later to close the books at the dealership.  Hunter and I thought we were through the toughest part.  Chemo, no blood counts, and waiting for engraftment were no walk in the park, but Hunter endured.  Naively, we told ourselves as we passed time together in the RV that we could be one of the lucky ones who were released to go home after 60 days.  After all, Hunter was young and came into transplant healthy.  God had answered our prayers.  We would be home to our boys soon.  Hunter was told at his clinic visit that it was time to start taking his life back and we were released to venture very carefully into public.  That all changed very quickly.   

Day 30

Whereas Hunter was mentally prepared for his first hospital stay, this second one has been much more difficult.  He had tasted freedom, and then it was taken away.  He was very very sick when he was readmitted.  All we heard was this was a long and slow healing process.  No end date was in sight.  Mentally and physically, Hunter was broken.  The nausea, weakness, and central line issues were back along with the uncertainty and anxiety of his hemolytic anemia.  The first two treatments did not work.  He was still destroying his red blood cells.  The blood bank could not find the proper blood for him with all his antibodies, so we knew that the blood he was getting wouldn't stick with him.  CMV virus attacked his platelets, his clotting was way off, clots caused massive swelling in his arm, and to top it all off he was losing blood in his stool.  He was confined to bed with a groin line that wouldn't stop bleeding.  Its been agony for all of us.

But...

This last month has changed us all for the better.  

We never would have known the feeling of total and complete reliance on God or the goodness of God's people.  Hunter had no more strength or courage left in him.  He could not do it on his own.  Many nights have been spent gathered around Hunter's hospital bed begging and pleading with God for healing that only He can provide.  And we know we're not the only ones hitting our knees.

Friends and strangers alike have come from all over Houston to give blood in Hunter's name.  I would have never dreamed a simple blog post could reach as many as it did.  Every time someone shared it on facebook or got in touch with Jana, it felt like a hug straight from heaven.  Too many churches to name have contacted Jana asking how they can help.  We have never even attended a church in the Houston area, yet droves of people were willing to bless us in any way possible.  Jana's phone still rings off the hook.  A friend from high school sent me this facebook message about her brother's experience in the lab.... 

"He said the guy who drew his blood and him had a real good talk- the guy said- "who is this guy? I haven't seen anyone get as many donations in his 30 years at that job". Morgan and him got to talking and about the power of prayer and the guy referenced the "love thy neighbor " verse. He said he'd prolly make his way up to meet y'all. Very cool that God is working through Hunter! Praying for y'all everyday! "  

The truth is we are no one special.  We are just a family trying to be faithful in following God's leading in our lives.  Hunter and I strive to be good parents to our boys, and examples of how Jesus would live.    It's always been important to us to be a part of our church, and we will always treasure friendships made at Abilene Christian University.  But we've never NEEDED our community like we have the last month.  I've heard often times "I love Jesus, but hate the church.  I don't need to be around other Christians, they'll just let me down."  While this is true, people aren't perfect, I'm here to tell you, Christians have come to our rescue in our time of need.  We have received cards, phone calls, text messages, care packages, cookies, complete meals delivered to the hospital, not to mention blood from people's bodies.  It is all too easy to get wrapped up in our own lives and forget about the struggles others face.  I hope I can better minister to those who are going through hard times as so many have ministered to us.  

We don't know what our next days, weeks, and months hold.  What we do know is that God will never leave us.  

Hunter escaped his hospital room for the first time in 11 days this afternoon to walk the hall.  We ask for prayers for his hemoglobin to continue to increase, for protection from infection, and for our family back in Abilene that we miss so much.  Our journey is far from over, but we are thankful for how far we've come!