Monday, April 21, 2008

Team Zachary Update

This is where my heart is today. Ann, my boss, writes updates on Zachary whose story I have told from time to time... She stopped Kevin and I in the parking lot on our way back into the building after lunch - she said the lead physician, Dr. Vose, called to say that Zachary may not live more then a few more days...

From Ann:
Zachary's current medical situation is highly challenged and precarious as he remains in a struggle to survive the stem cell transplant and the Graft-Versus-Host Disease. His digestive system remains very compromised from the past six weeks of this process. The challenge of the hour is located in the immense fluid accumulation that makes him look like the Michelin Man in every part of his body from the constant infusions he has been since having been re-admitted to the hospital on April 1st. His body is currently a massive chemistry experiment in balancing high doses of steroids, insulin, anti-rejection drugs, anti-cancer drugs, blood and platelet infusions, nutrients, antibiotics and all of his many 'normal' medications. This fluid retention has left him currently immobile and confined to his bed.

Of greatest current concern is the presence of fluid in his lungs.

To remedy this, Zachary is receiving oxygen and yesterday evening was placed on dialysis with the intent of giving him some relief by removing fluids from his blood. This is not a straightforward process, and the interdisciplinary team at the University of Nebraska Medical Center is working diligently to keep him alive. I will keep you posted.

Journaling

Last night I cried. And then I cried some more and when I was done I started crying again. I cried for me and for Dara and Zachary and that they keep coming up with more ways to torture my sweet boy. I cried because I just don't see what he could have done differently while staying true to himself. We knew this was going to be hell but oh my ... And I cried watching my wonderful husband who had spent the last 15 days with him join me in the place of tears thinking about his boy's body and all that it had endured. And the heart-wrenching-ness of not being able to do anything but just watch and know that not only is he suffering but that we signed up for this.

My niece saved $193 for Team Zachary. She handed it to me in a big stack of crumpled ones and fives and tens and twenties. She didn't really know how much there was in the pile she handed me. I wanted so much to give some back to her. "No, I don't need all your money, sweetheart." But her mother stopped me with a stare. Later her mother and I talked about the need for my niece to feel as though she was doing everything she could to help Zachary. My heart broke. I know how she feels. It's not as though she thinks that she can buy Zachary's safety, just that she has to live with herself. I understand and respect that. I share her want. The story is not about the money. The story is about how each of us lives our lives to the best of our ability so at the end of the day we rest peacefully with our heads on our pillows. I don't drop what I'm doing in Bloomington and go to Omaha because I think I am actually going to influence the outcome of this story. I do it because no matter what unfolds I have to live with me.

And then there has been the outpouring of help in Zachary's request to help him help others. I didn't think people really read these letters to be honest or maybe I would have stopped long ago just because no one can do someone else's story justice and certainly I can't with Zachary's. We have received 96 different donations from people. NINETY SIX! Many of you I know and many of you I don't know. It's a toss up as to which one touches my heart the most. With our matching dollars we are up to $84,430. Zachary and I discuss our progress every time I talk with him, so if you feel inclined to Help Zachary Help Others please send your check payable to the University of Nebraska Foundation to Ann St. John, 210 E. Gilbert Dr., Bloomington IN 47408. Or you can go to www.nufoundation.org/teamzachary to give by credit card. All donations are tax deductible. In the month of April our family will match your gift dollar for dollar. But Wait!! There's More!!! If you give in April, you will receive a darling post card with nine pictures of Zachary--and our thanks ... everybody needs one of those!

Please keep Zachary & his family in your thoughts and prayers. I have found that sometimes there is a maybe with Cancer.

2 comments:

LoriD said...

Such a heart-wrenching story. It has to be the worst thing watching your child suffer. My thoughts go out to Zachary and his family.

SFabris said...

My Heart goes out to you and i am so sorry for your lose. Zachary has touched so many lives including mine and my husbands and he will Never be forgotten. My prays are with you.
Mark and Shannon Fabris
Friends and fellow Soldiers