The Road Just Got a Little Bumpier...

For months we have heard about GVH, also known as Graft vs. Host Disease.  Today Kevin finds himself having a personal experience with GVH.  On Friday he was admitted to the hospital without the sure signs of GVH, but being very precautionary they admitted him to watch him.  On Friday they took him completely off all food and even water and tested for any bacteria.  Have you ever found yourself hoping for a bacteria?  We were, because a bacteria would be much easier than GVH.  On Saturday they did start feeding him through his line, but that is not taking away his desire for food.  Over the weekend the symptoms of GVH were starting to appear, but the only way to find out for sure is with a scope, which they did on Monday.  Yesterday the results of the pathology report confirmed GVH.  What is GVH?  I will try to explain this in simple terms.  Our body recognizes its' own cells and recognizes foreign cells.  The way we protect ourselves from sickness and disease is that our body recognizes foreign cells and then fights to eliminate them.  Because of this, Kevin's body knows that he has foreign cells (the new donor cells) in his body.  A large portion of the medication Kevin takes has been to keep his immune system and the donor system low enough to fool his body into allowing the donor cells to exist.  Here is the conflict...we want the donor cells to fight hard to take over Kevin's immune system.  As the donor cells fight to exist, Kevin's cells recognize them as foreign.  The way this fight manifests itself is GVH and GVH symptoms attack the gastrointestinal system.  Why now?  Kevin was so close!  Actually with Kevin's type of transplant GVH typically appears between day 82 and 100.  Kevin is right on schedule.  We knew about GVH and we knew that 70% of patients get this, but of course we thought Kevin could be in the 30%.  No so lucky.  So what now.  The treatment for GVH is a high dose of steroids.  Steroids work well, but they have their own set of side effects.  Some of them being, even higher compromised immune system, high blood pressure, high blood sugar, increased chance of pneumonia and fungal diseases, swelling in the face, potential long term bone and muscle loss and the list goes on.  All that means new drugs and new precautions.  The other challenge of this high of a dose of steroids is they have to taper you off them gradually.  And then the balancing act of not tapering too soon and allowing the GVH to flare again and yet not having to stay on them for a long period of time increasing all the long term effects.  The steroids coat his stomach and intestines allowing him then to eat food and take oral medications.  Once that happens he can go home.  But that is a slow process.  Hopefully tomorrow he will get ice chips, then water, then clear liquids then finally start on food.  After each step they evaluate and make sure his system can tolerate it.  This will probably be a two week process.  That's the hard news. 

Now for the non-medical part of the story.  Kevin actually feels pretty good, that makes being in the hospital really hard.  His sense of humor is working well for him.  On Tuesday, when we were just waiting for pathology results, and there was nothing for the doctor to really talk to Kevin about they sat and exchanged bad jokes.  Kevin keeps the nurses and aides laughing and his sarcasm is at its' best.  I seem to be having a harder time with the closeness of the walls in the hospital than he is.  I have to say he is enduring well, really well.  They highly encourage him to get out and walk around the floor of the hospital 3 times a day.  In order to be out in the open he is suppose to wear a special gown and a mask and gloves.  Well his worst fault is non-compliance.  You all know Kevin has never looked like the cancer patient and he doesn't plan to start now.  He absolutely does not wear a hospital gown and we have always called his mask an accessory because he is usually wearing it as a bracelet.  So after two different speeches about what to wear in the halls, he semi complied.  He tied the yellow special gown around him like a super hero cape and he put the mask on his forehead so that when someone was looking he could slip it over his nose and mouth, and no attempt at the gloves.  What can I say, I have no control and the nurses have very little.  The most important thing we do is take it one day at a time.  It's really easier that way.  We have learned that disappointment only comes when we set our expectations too high.  This is a process and what he's working for is well worth it. 

Today the doctor talked to Kevin about the possibility of depression while being on steroids and he said "that can't happen with the three kids  I have".  That is so true, they are the best medicine that Kevin takes.  On Sunday the three of them spent most of the day at the hospital and we had the whole floor asking for invitations to the party.  Kevin needs only to "hang out" with them for a little while and everything just seems to be ok and he knows what it is he fighting this fight for.  We are so blessed and they have been there for both Kevin and I every step of this journey. 

A couple of weeks ago Tiff and Meg were talking to our Bishop's wife and reporting to her that we have had more family time than anyone could possibly ever want.  They said that all those Monday nights that we seemed to miss Family Home Evening, well we have made up for them.  We got it covered and family dinner hour, well when you can't eat out for 100 days you have more family dinner and family lunches than you can imagine.  Tiffany, Megan and Brandon you are the best and thank you for always being there for your parents.  The blessing of having a family that is always there for you is one of our greatest tender mercies.