My day is packed with appts tomorrow so dont know if I will have time to post this tomorrow..

Adam is FINALLY getting treatment for SOME of his skin cancers on Tuesday. With having our Gorlin Syndrome we are high risk for cancers, tumors, cysts etc. He has lots of skin cancer that I have been trying for YEARS to get biopsied and treated but doctors havent done. So HOPEFULLY if Adam doesnt freak out or have a meltdown on Tuesday, he will have his first PDT (PhotoDynamic Light Therapy) done on his upper back and neck. If he tolerates it ok, then we will see about doing his front area and then we will have to schedule surgery with anesthesia to take the ones off his face.

With PDT treatment, They will put a medicine called ALA on Adam's skin cancers. Then he (we) will have to sit in a dark room for an hour while the skin cancers absorb the medicine. While doing this he can watch a movie on the computer screen. I will have to get him one. THEN he will sit or lay under a big U shaped light and the light will burn away the cancers on his back and neck. It will be kinda warm and might burn some. They said they can put a fan on him. The treatment they said will only take about 15 minutes. It will leave a bad "sunburn" on him and he might swell some. He wont be able to be in ANY sunlight or flourescent light for a few days. He will have a burn on his back for a week to 10 days. Then it should clear up and not leave any scars.

With his sensory issues it might be a challenge but Im hoping to be able to distract him with a game for his gameboy and get him a movie to watch in the room. We dont have TV or movies here at home so it will be a treat for him.

I had them take a picture of the light machine and mail it to me and I was hoping for more pics to make what is called a social story to prepare him for it.. But with as many appts and stuff as we have had, this day has come up on us quickly and I didnt get the book made.. I did show him the picture. I need to get it out again and let him see it so he knows what it will look like ahead of time.

I PRAY we can get thru this without to many tantrums and he can handle it well.

Keep us in your prayers.
I'll let you all know how he does.
Im so dreading this day. YET glad its finally here.. so we can get rid of some of this cancer on him..




HUGS
Gina Marie