12/22/09: Hi guys - just want to wish you all the happiest of holidays. Sounds so inadequate. You have no idea how much you have helped us all here with Jen. Jen, because of her condition didn't get to read the blog on a regular basis but we did. And, your comments and support got us through some very trying times. We were so grateful to benefit from the wishes you were sending to her and now she can see what faithful and good friends she has in all of you. And, we can see why you are so important in her life.

Thank you for being there. Thank you for all your prayers. We hope for you in 2010: good health, few worries and more love than your heart can hold.

Thanks again,
jo/mom/granny - signing off

Thank You

Well, needless to say we have begun "packing up". I feel like a 5 year old waiting for Christmas-ironically I am a 38 year old waiting for Christmas to be over so I can go home.... crazy.
In packing things up I came across my little black and white box of positive energy. While I've been here I have kept every card, gift, note, email etc.. and whenever I feel down I go to my box and read all of your notes. I can't help but feel better. It is amazing. You are all so amazing!
THANK YOU! THANK YOU! THANK YOU!
I don't know how I will ever Thank all of you enough. It means the world to me...
At the Hutch School (where David & Dominic attend here in Seattle) there is a central theme "What Cancer Cannot Do" and the kids keep in mind all that cancer cannot take away. I could not help but think what cancer can do-It has brought so much to my life that I never would have known. It has brought family together, friends in touch, new friends & relationships. I know it has brought more good than bad. My Mom, Husband & Sister-they are so faithful and constant-it brings tears to my eyes...
I love you guys.
I will be paying it forward!!!

Counting Down

Well, the countdown begins. Pending ABSOLUTELY NO GLICHES IN MY PROGRAM & I MEAN NOT ONE!! I will officially be "discharged" to go home on January 6th! I cannot tell you what this means to me. The next few weeks are going to be torture so anyone who can speed this up feel free to go ahead and get on it! The kids & my Mom get to go home on the 29th and Dave and I will be right behind them! Dave is currently fighting a cold so he has been sleeping in the kids bed. I am sooooo paranoid but it's yet another small miracle that I haven't gotten a cold yet.
I have begun tapering down off my prednisone which is responsible for a whole host of side effects-one being this diabetes which we all know MAKES ME CRAZY! Diabetes is torture in it's worst form. I only see my team once a week now and my blood counts are "normal"-whatever that is..... I have decided that normal will no longer exist in my world. Everyone keep the prayers coming-this is the true test. I need to get off the prednisone which is keeping my graft vs. host disease in check. A slow weining off prednisone in the hopes that this body here won't notice and just keep on healing!!!
I don't know what I would do without you guys. You keep me going. Thank you!

Miracle

I meet with the my transplant team 2x a week - Monday & Thursday & I am on the red team. There is usually my nurse Jackie (who is a constant-she doesn't rotate), a fellow-almost a Dr. and the attending physician (who is basically the head Dr.-who comes in after all the details have been worked out, makes an appearance, gives his input and leaves). I think that is the hierarchy-anyway it's close. Well, the fellows and the attendings rotate what seems like weekly but should only be monthly-I think. And it is the end of the year-and one of them is going on sabatical blah, blah, blah. My point is that I have seen quite a few Dr.'s in the last 3 months. All of who have read my chart (I hope), all who know what what down with my liver. Which was during the transplant-actually after the actual transplant I started having trouble with my liver. They (The Team) could not figure out what the problem was but what they did know was that my bilirubin was on the rise! And rise is did to over 30-keep in mind .2 to 1.3 is a normal bilirubin level. I became a yellow/orange, was in the most extreme pain I have ever been in my life, bloodshot eyes, I was hallucinating and basically don't remember alot about that week.
ANYWAY, I got a new attending on the team today - a Dr. Paul Martin. I like him-I like all of them. So, the usually greetings, blah, blah, blah, I begin complaining about my diabetes-which is driving my crazy-for those of you who don't know I am now a type 1 diabetic and it sucks!
Well, Dr. Martin says "Well, I just came to meet the miracle". I'm like "oh really-who's that?"
He's like "You realize that the number of people who survive a bilirubin of 30 is less than 2%? Don't look a gift horse in the mouth"
My hands flew to my face, I started crying and have hardly stopped all day. I looked around the room at the others there and over to my husband who was as clueless as I was. No one ever told us. The team never warned Dave, my Mom, Meg-no one knew that I was likely to die in that hospital only a few blocks from where I sit right now.
NOW DOESN'T THAT PUT THINGS IN PERSPECTIVE~

Still Out Here in Seattle

Well all of our visitors are gone and it seems WE ARE STILL HERE! YEP-WE'RE STILL HERE!
I feel like we will never leave and last night as Joey was packing to go me and the two little boys curled up in my Mom's bed, licking our wounds, wondering why we couldn't go too.. It really is hard. HOME, HOME, HOME. There is nothing like home for our family. Every vacation we have been on, every stint down the shore=home was always good to go home to. My heart feels broken. My sister says home will cure me and I know it to be true. I truly ventured out Saturday-Michaels, and Outback to eat-you can't imagine. I was so friggin paranoid the whole time that I actually considered eating in the car to avoid any and all possibility of attracting the swine flu! Or any flu for that matter. I miss life so terribly and one more thing. I am really sorry if I am suppose to be all happy and ho hum but that is IMPOSSIBLE FOR ME! It is what it is so I will not be offended if you don't want to read-believe me-this is therapy in it's truest form!
My mom went to the Dr. about her eye which is "hangin in" no pun intended. For those of you who don't know she struggling with a retina issue that might actually "break" Please keep her in your prayers. It would be really nice if she got to keep her eyesight in her left eye! I'll try to keep up-sorry - I really do love you

Good News or Bad News

Ok-I get all dressed up and believe me I was dressed up-which means I was not wearing sweats or those killer moccasins that Heidi gave me. There was the kids art show @ the Hutch school which was awesome! My kids are awesome. I could go on and on about them alone. So I put on my size 4 riding pants-which I was so proud to get into when I bought them now they are 7 sizes too big and look pathetic, my hot pink sweater, and my riding boots. I did not feel like a million bucks. Fine. I got out of bed and went to clinic. I am losing weight-104-they are not happy. I am a type 1 diabetic which now explains alot-I guess. I also got the announcement from the attending physician that I am CANCER FREE! Is that real-I guess. I guess I am not making cancer cells. This whole diabetic thing is a pain in the ass. I don't understand it but Dave does-he is amazing. He wraps his mind around whatever they say, takes it in stride and we move on. I don't know what I would do without him. I love you Dave....

I want to taste food

The worst, the absolute worst, is not tasting food. I am missing a taste bud, many, some, a couple, a few. Does it matter? Nothing taste right. It is so hard to eat!!! I have eaten I cannot tell you how many pints of Ben & Jerry's ice cream because it is so rich that I can taste it. I am sure I am now a diabetic. I cannot go in public. That stinks too. I go from the house, to the car, to the clinic, to the car, to the house! Great huh. Every morning I look out the window, across the bay and thank God that I am not in that hospital. Isn't it ironic that I can see my hospital room from our bed. I do have alot to be greatful for. And of course what would I do with out the support of all of you. And I am not being cliche-really I'm not. Thank you :)