update from 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

Wishing you lots more sneaky adventures to undisclosed states!
 

Maryann, you are being the best of friends by fighting such a valient fight for yourself. And reading your story of your birthday and graduation adventures blessed me so. I'm pulling for you and am proud to be your cyber friend! ma

Maryann,

I am so glad you posted. It sounds like you still have your fighting spirit. I will keep you in my thoughts and prayers .

Hugs,
Karen

Way to go - keep jamming on Mary Ann. We are all routing for you here. It was GREAT to hear from you again.

Big hug to you

Maryann,

I've been thinking about you and I'm really happy to see you check in. Great stuff with the kids. Welcome back!

Eric

Hi Maryann,
Your post just made my day. You have been in my thoughts lately and I have been wondering how you have been coming along. I'm so pleased that you were able to make it to your son's graduation. I was a mess at my son's graduation three years ago. I had just had my first brain surgery and was on that awful decadron. But I felt happy to make it there. Then a month later I had to pull myself together and host my daughter's wedding. By then I was in much better shape and on Herceptin, which was a miracle drug for me at that time. I hope that your doctors and your body are able to get the graft versus host disease under control. I know it is not an easy situation. You are a very strong woman and I wish you the best.

Again, great to hear from you again!

Best wishes,
Barbara H.

Thanks for taking the time to update us on you. We are all glad to hear from you. Have fun with your kids and I hope your liver and bilirubin levels will normalize.
Hugs,
Anne

The things you've shared with us are the things that will last a lifetime and it makes my heart feel so very full to know that you've had the chance and made the effort to do these things with your kids, even though you aren't 100%....these are the things in life that keep us all fighting and wanting that extra day or month or year. These are also the things that make treatments and surgeries bearable.

Lots of love and luck to you M.A.!
Steph C.

It's always so nice to read your posts! Gosh, you are really living life to the fullest! My kids would be lucky to have such a fun and outgoing mom as you! I'm okay, I don't know that I have the courage to drive into another state for a rock concert! You are amazing!

I am hopeful that your liver will return to its normal functioning and the graft will take. I know it will! You are one tough cookie. I know that you will be here for many more years to share good stories with us.

Hugs and Prayers,
Lexi

Maryanne, it's GREAT to hear from you! I'll be praying the GVHD thing works in your favor, and how could it not?! You're our hero :)

<3 Lolly

Wonderful to hear from you
 

Maryann:
It was wonderful to see a post from you. Joe posted a couple of times looking for you. I think a lot of us were worried. Your posts, as always, continue to inspire me. I feel like I know you through your words. Please stay in touch. Most of all, please know that my thoughts and prayers are with you. You are a fighter!

Glad to see that you popped in to give us an update. I was going to call out the Mounties and start a search!

Was thinking of you, as I went to my high school reunion this past weekend and the hubby of one of my friends has twice been a marrow donor. He has met one of the people he dontated to and that lady was doing well - someone from Kansas!

Will keep praying that the GVHD gets under control and leaves you alone with your new self. It really can be an uphill battle. But look what you have done with the time gained by all this! You had/have a lot to look forward to and this is a big key.

Hi Maryann,

So good to hear from you. :) I was worried that I had not seen anything from you for quite some time. I am sorry that you are back in the luxury suite, but I am hopeful for you that you will be back home soon.

Congratulations on the graduation, we had 2 this year ourselves and they were both very emotional.

What a great mom you are and I second what the others have said too, you really are out there living each moment. You are such a good role model to the rest of us. You go girl!!!

I am sending you wonderful healing thoughts and will keep you in my prayers.

Big Hugs!
Patricia

What A Wonder Woman You Are...
 

It is soooo good hearing from you MaryAnne. I was very worried about you.

You are so amazing...in all that you are going through and everything that you still manage to do in your LIFE. LIFE is what you are living and continue to do so MaryAnne.. You are our superwoman indeed.

Good luck to you honey. I will continue to pray for you.

We all love you girl

It was good to hear from you Maryanne. Keep fighting for your health. The great thing about having kids is that you keep current. I have no kids and I'm clueless. Fall Out Boy? I watched the concert in memory of Princess Diana and recognized Tom Jones. God Bless and Good Health to you.

You are such an inspiration!!! All of your milestone events with your great family sound like so much fun. Sorry that you are writing from the 'luxury suite', think of it as resting up for the next adventure!!! Thank you for your update!!!

It's wonderful to hear from you again Maryann...you still sound so positive despite all the setbacks. hang in there girl we're all thinking of you!

Hey you
 

Hi Maryann!

Are you connecting with any GVHD support groups? Are they as good as this HER2 group? It is so good to see you! I bet you are happy to have your computer back -- We are all addicted to our lifeline of info and friends -- That should put some more oomph into your defenses!

HUGS,

AlaskaAngel

Hey Maryanne!!!

Great to hear from you. Glad to know that you are loving life with your kids. You are truly amazing. Hope things get better and life keeps "hapnin"!
________
Live sex

Glad to hear you are still getting up to so much with your kids. You are a legend.
Take care
Christine