update from madubois63

[madubois63]

#1 - If you haven't heard, I've been off line a bit. A nurse spilt water on my laptop. Thank you so very much to Liz's son, Arthur Jr., for fixing it!! It as very corroded and he did an amazing job cleaning it up!! Thank You!!!
#2 - Yes, I am in the hospital again. Seems June is my month to spent on "vacation." The month of June started off with a a fever that of course landed me in the hospital for 2 days. A few days later, my liver enzymes started to climb and the doctor stuck me back in the same room I spent last June in. I had several tests and a liver biopsy that came back inconclusive, even though it was pretty obvious that I have Graft versus Host disease. If I had gotten it prior to the first 100 days after the transplant it would be labeled "acute." Since I got it after the 100 days, it is called "chronic." Either way it is serious. Some gvhd is good because it means my body (host) is fighting the transplant/donor (graft) and the best outcome is that the graft wins. Anyway, I left the hospital with no decisive answer in time to go to Danny's graduation. After 7 1/2 years of being told I'm going to die, there was absolutely no way I was going to miss this huge milestone for all of us.
#3 - The graduation...My sister came over on the ferry and after getting there late, somehow I finagled a chair right on the field (almost everyone else was in the bleachers). It was a beautiful day and it started really nice...then the clouds rolled in and you could hear the rumble in the distance. A Huge bolt of lighting went off just above the field and it began to drizzle, then pour. The kids didn't want to move the ceremony inside, so we stuck it out. My sister ran to my car and got out my beach umbrella; and Mom, Dydee and I huddled under it until the rain stopped (then started again). It was a day not to be forgotten. Dan got accepted to all the schools he applied to. He is going to Farmingdale State for a year (to be close to home/me) and then transferring to Rochester Institute of Technology for Computer Science. I am VERY proud!!
#4 - The day after...I had an appointment for blood work at the oncologist's office, but when I looked in the mirror the day before I was yellow. I called the office and said just admit me...So Mom took me right to the hospital and I've been here ever since. I had another liver biopsy that is being sent off to Seattle for a second opinion. I had several other tests and there are no blockages in my liver or gallbladder. Everything is good except the bilirubin number. The bilirubin has to do with my red cells accumulating in the liver. I started a treatment plan that is 6 treatments of a horse serum (neigh) given every other day. It is an immunosupressant, so I am in isolation in a germ free ward (my 19th floor luxury room with the great view of the south shore of Long Island). I've had 5 treatments so far (they doubled my dose after 3) and the bilirubin number went down then up again. I am not as yellow, but I really need that number to go down. I am on heavy, heavy steroids and now have chipmunk cheeks but I am skinny (for me) everywhere else. I've lost 60 lb since last year this time. My hair is back with a vengeance. Soft and curly and at least 3 inches long. Side note....Dan's hair is very long and he is getting it cut and donating about 14 inches to "locks of Love." They make wigs for kids with cancer.
Other news...Shannon turned 16 on May 21st. Instead a sweet 16 party she opted for seeing her favorite band (Fall Out Boy) on her birthday. I made it a Rock and Roll Road trip and we had a blast! Out trip started at Hershey Park where we spent the day and picked up her best friend Amanda. Amanda was there for a chorus competition (which they won). The next morning the school (including Amanda's mom) drove home and we headed off to our first concert. I will not disclose what state we drove to because my mother would kill me. Concert was great and we hung out afterwards and got some great pictures with the band. The next morning we started out and drove cross an undisclosed state to the next concert. This was her birthday, so I gave out cupcakes to people on line and working at the venue. Shannon got right up to the stage for this concert and it was amazing. One of the guys in the band said happy birthday during the concert and wore her burger king crown for a while on stage. She was thrilled. After the show we hung around and met some of the other bands. I got all tennie and took pictures with a real cutie pie young enough to be my child. The next day we drove allllll day home. She saw the band a few days later here at Jones Beach and then again in Connecticut. If your interested, Shannon and Amanda will probably be in the first row for the Fall Out Boy concert on the Today show this Friday morning. I am praying I can be there, but we have back up if not.

That's all for now. I hope you are all doing well, and I pray for everyone everyday. I know some of you are going through really tough times, and I wish I could be a better friend. Please know I love you.... Maryann