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

(((GinaMarie and Adam)))

I sure will be keeping you in my thoughts and prayers

May all go smoothly and safely with much healing to follow quickly

Cheri

What a day today to start off his treatment tomorrow.. Adam and Noah had physicals today so they could go to Camp Wonder in June (Camp for kids with skin diseases). I thought it was just going to be normal physicals.. Little did we know that they both were going to get shots (second chicken pox shot) AND blood draws, and Noah got full scoliosis xray. It took 2 of us (the receptionist is a BIG lady that helped me) hold Adam down and Noah was almost as bad. He was so mad. He was calling me names and threatening.. I had offered the staff to buy them ice cream if they came with us to help hold them down for the labs.. they declined and wished me luck. lol Amazingly he cried and thought we would need more help but he wasn't AS bad.. Tho bribery of dinner out, ice cream and possibly a prize might have helped.. lol The injection I got in my foot btwn thier physcials and labs hurt WAY more than all thier shots and labs put together. lol

Now they are in bed and we face tomorrow.. Im going to try to remember to take the sheet of blue ice and aloe vera spray to keep his back cool on the way home. I dont have A/C in my van.

I'll let you know how it goes when I can tomorrow.

Thanks,
Gina Marie

Ok.. We have been home since this this afternoon but I wanted to download pics so I can show you. He did pretty good tho did have a hard time after a bit.. Tho I think I would to after already being pretty burned after only 10 minutes in this light and then having to go back in for another 5 minutes.. And to think he will be MORE burned and swollen after it sets in tonight and tomorrow. We did the front of his neck and his upper back/shoulders. Im keeping him loaded up with with Motrin and ice and trying to get him to keep aloe Vera spray on him.

Here are some pics of him and his burns..


Getting his back cleaned before putting medicine on his back


Waiting while medicine absorbs into cancers, playing on the computer. I went and bought him a DVD last night because we dont have TV or movies here so it was going to be a special time but the computer wouldnt play the movie for some reason.. So he got to get online and visit his WWE site that I usually wont allow him to go to at home.


Burn on back after 10 minutes of light treatment.


Burn after 10 minutes on the neck. He was NOT a happy camper.

Its suppose to be worse tonight and tomorrow.

He is sleeping peacefully now with a fan blowing on him.

I'll keep ya updated..

GM

(((GinaMarie & Adam)))