First Weekend Home and Plan for Boston

Just wanted to give everyone a quick update. I got home last Thursday. On Saturday, Nolan had his final football games of the season. They had a round robin between the 4 flag football teams. They won all four games and ended up being undefeated for the season. Their success can be attributed to the great coaching they had this year.  Thanks Rick!  Nolan played great this weekend.  He got a touchdown and had a few great defensive plays.

My appetite is definitely back.  Since I have been home, we have had a ham boiled dinner, home made steak and cheese sandwiches, peanut butter hot fudge sauce, yellow cake with chocolate frosting and blueberry pancakes.  I came home at 173lbs, I am up to 177 today.  Going to start making some "healthy choices" starting tomorrow.

We heard from Boston today as far as our schedule for Boston goes.  It looks like at this point we will be going down for the day on October 29th for tests and paperwork.  We will be heading back down on November 5th to check in for the transplant.  This will be a 4 to 6 week stay.  We are unsure at this point what day the actual transplant will happen.  It will probably be about a week after I am admitted.

When I first am admitted, I will go through another high dose round of chemo and full body radiation.  The goal here is to completely wipe out my defective immune system.  My immune system does not see my leukemic cells as "bad guys".  My white cells which should attack these leukemic cells, just think they are normal cells and allow the leukemia to grow within my body.  If left untreated, the leukemia will take over, kill my immune system and will not result in a happy ending to this story.

Once my defective immune system is wiped out, I will be injected with my donors bone marrow (immune system).  I will be given drugs to try to suppress my defective immune system.  Eventually, my donors immune system should start to develop in my body.  If all goes as planned, the donors immune system will take over, see my leukemic cells as "bad guys" and attack and kill them. 

The doctors have told us there a few things that could go wrong.  My donors immune system may never start growing in my body.  If my donors immune system does begin to grow in my body, there is a probable chance that it will see some parts of my body as an invader because they are different organs than the donors organs.  This could be my skin, my eyes, my lungs, my stomach.  Basically any part of my body.  This is called Graft Versus Host Disease (GVHD).   When this happens, my donors immune system growing within my body will attack what it believes to be the invader.  It is treatable, depending on the severity of the "confusion".

Once I come home, our house will need to be kept extremely clean.  My sisters and parents have hired a cleaner to come in once every two weeks over the last couple of months.  It has been a huge help for Crystal.  When I come home from Boston, my immune system will be pretty much non existent for close to a year.  If I go in public during the first year, I will need to wear a mask and gloves.  The kids will not be able to have friends come over.  The house will need to be spotless at all times.  The tub /  shower will need to be washed each day.

The next year is going to be tough to say the least.  Crystal and I have a great support system and we thank you all!  We are ready for this stupid challenge.  We will get through this and we will kick leukemia's ass.  People have said we have a great attitude about all of this.  How can you not I ask?  What else are you gonna do?  Feel sorry for yourself and ask why us?  Tried that for about 2 days.  Didn't help one bit!