cGVHD

chronic graft vs host disease

throughout these last 9 months or so this is the monster we have been looking out for...because tims body received a brand new immune system things sometimes get confused. the funny part is that it is not tims body rejecting the new immune system...it is the new immune system rejecting tims body!!!

we were at the doctor yesterday. i was explaining to someone the other day that we are fighting two separate battles. the first one is the cancer itself...hiding out in remission. the transplant has knocked it down and we pray everyday that it will never reappear. the second one is the rejection issue...will mark (tims brother-the donor) and tim be able to get along for an extended period of time.

right now the cancer is not an issue.

the best way i can explain what is going on is that if you were to throw two siblings in the back seat of a car and start out on a very long journey...eventually the one will start to "pick" at the other. a funny look or a poke or a punch and soon it turns into an all out battle about nothing.

well...the battle has begun-so far it is just a little poke or jab. tim is having some symptoms that are no doubt cGVHD. the two most common areas affected are the skin and the GI tract. (although it can also affect the eyes, mouth, liver, heart, lungs, ect...). the symptoms that tim are having are minor but are definately something to address. a little skin rash on one arm and then the other arm, itchy skin on the back, stomach pain, dry mouth, swollen tongue, blotchy face...not one of these symptoms alone are very alarming, but when you put them all together in a post-transplant patient the doctors take notice and react.

we are now going to add another anti-rejection drug to the mix. this one is very different than the other one that he is still on. from the best we can tell they have been avoiding putting him on this particular drug because of the side effects. this one works "like" a chemo drug and because of that it may suppress his immune system and mess with his liver!!! the two things we have worked so hard to fix-the white count and the liver-are now in danger again. i guess they figure that we need to fix the immediate problems first and deal with the adverse results later.

keep in mind that TIM IS FINE...minor little side effects have just thrown up a flag that we are having to deal with. (although emotionally i think we both took a hit yesterday-physically he is OK). i tell you all this so that you can keep informed on how tim is doing, plus for those of you that have so faithfully been praying for us...you can know how to pray. we expect there to be bumps in the road but when they hit it good to know that we have such a large support system who love and care for us and will pray for our needs.

i will keep you all informed...

thanks for checking in.

tim and tammy