Steroids, headaches, and double dark chocolate cake

Aaron's sores are not healing despite all our efforts so far. We tried photophoresis five days a week for several weeks. This did not help. It did, however, contribute to fluid overload and increased blood pressures.  Dr. Davies decided to stop the photophoresis for a week.  Unfortunately, this did not help his blood pressure much.  Friday she decided to double Aaron's steroid dose for two weeks to see if this might help the sores heal.  Too soon to tell if the sores are getting better, but not too soon to notice the change in mood.  Watch out!  Steroid Aaron is back in full effect.  Screaming, tantrums, increased appetite, and Mom gone crazy. 

I have been having really bad headaches this past week.  The headaches may be from my horrible Monster energy drink habit.  They might be from episodes of crying when I see my kiddo suffering.  They are probably from dehydration.  Whatever the cause, steroid Aaron has not helped. 

The increasing steroid has given me a new hope, but I am having a hard time being overly optimistic.  GVHD is supposed to "burn out" in five years (if you survive to that point).  We are well into the fourth year post-transplant and I don't see much improvement since he first got GVHD three weeks post-transplant.  My prayers have changed.  I still pray Aaron has a full recovery (of course), but I pray that he is happy and we can all be at peace.  I will be comforted with peace and happiness right now. 

I try to get Aaron out of the hospital on my days off.  He can get passes for four hours out of the hospital.  Saturday evening I took him to Buca di Beppo.  Aaraon's requirement for a restaurant is that they serve spaghetti and garlic bread.  He ate two bites of spaghetti and one bite of garlic bread.  Then he asked for cake.  He ate a good portion of his gigantic double dark chocolate cake. 

Aaron wanted a spider for Christmas that he could hang from the ceiling. Neither Santa or I could find one. I did find this super cool remote control spider at Trader's World (flea market). Aaron thinks it is a little too big. I told him he should turn it on whenever the doctors and nurses come in and scare them away. So far he tried it on one nurse, but she still managed to stick around and get a blood pressure. We need to perfect our scheme. We are thinking of having it hide under the bed until the doctor walks in. Will keep you posted...