On May 4, 2008 at 6:33 pm Zachary took his last breath.

What follows is a letter Zachary's father wrote:

David Grey sings to me today…

'Now the flood gates cannot hold
all my sorrow all my rage
tear drops fall from every page.
Meet me on the other side.'

Yesterday Zachary was tested for 7 skin irritations that he had on his skin. When Dr. Vose reported them today she said that he had a fungus in his blood that will travel to all of his organs.

It is fatal. They do not expect him to live to the end of May.

They are doing everything possible to make him comfortable. He is still unconscious and will likely remain in that state.

When I walked from my car to the kitchen I passed 8 pictures that Zachary is in.

I cannot even imagine life without him.

Funny how he never found a vocation that he felt right with. And yet he led us. He found us. He showed us the way. I can only hope that in my 'vocation' that I help a fraction of the people he has helped.

In his need to help others, he has lifted us all up farther than I could have imagined being lifted.

Of course I will keep you updated as his journey unfolds. PLEASE do NOT call Dara. Her plate is more than full right now.

All my love,

Ann

Hello Team Zachary,

Medical Update: On Monday, April 21st, Julie Vose, M.D., the lead oncologist caring for Zachary called to say that the fluid build up in Zachary's lungs had become increasingly problematic and suggested that it might be a good time for us to return to Omaha. We ALL are in Omaha right now--three siblings and four parents. Later that day it became necessary to place Zachary on a ventilator. He remains on the ventilator now.

We had the opportunity to meet with Dr. Vose today. The bottom line is that the situation is not yet without hope with regard to his survival. However, he needs a serious break in his favor and the following sequence needs to occur.

1. No new problems, complications or organ failure
2. The current infection in his lungs must clear up so that he can get off the ventilator
3. His digestive system must regain its capacity to absorb protein

If these things occur Zachary has a real chance of mending the many other issues in his body as it rebounds from the Graft-Versus-Host Disease.

I should point out, as unbelievable as this may sound, the dialysis which Zachary remains on has removed 55 pounds of fluids from his body over the past 3 days.

I will continue to keep you updated.

Signing off in Omaha,

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.

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.

One of the ironies of this situation is as strong as my will is, as much as I want with all my heart to directly help Zachary, I can't. I can't help my own child directly when it comes to his cancer. The only service I can provide to him is helping other people's children in the future.

Last night I spoke with Zachary and told him that his fundraising was at $53,150 which included checks, online contributions, a $10,000 pledge and our matching donations. He said, 'That's great Ann. It's like selling Girl Scout cookies. People just can't say no. There is so much work to be done. I lose my words pretty quick when I think about it.' He couldn't continue this thought ... his words were lost in emotion.

The actual medical situation is best summarized in the words of Mark, one of the several outstanding Physician Assistants at the University of Nebraska who has been caring for Zachary. It was this address that, in our estimation, qualifies him for good-guy-of-the-month award. At a very down moment for Zachary, Mark put his hand on Zachary and said,

"Zachary, I cannot look you in the eye and tell you that you will recover from this." But, I can't look you in the eye and tell you that you won't. Your probability of making it through this is not yet zero. I have been watching patients at this stage of the Stem Cell Transplant process for the past 10 years and I can tell you that this is the lowest point. Yet this is the point you have to continue to push through and choose to live. At this stage it is often one step forward and then two steps backwards....one step forward and two steps backwards. Then, after awhile it can become one step forward and one step backwards. Only later, after much pain and struggle, can we begin to take tiny baby steps forward one after the other. This is where we are. It is a long road. I know exactly what happens if you give in now. I know exactly where this ends. But, I know you. You are a good soldier and a man of faith. I know you won't quit."

Zachary responded, "I won't quit."

For a long, long time I have been giving many of you a little peek into the world of Zachary through my eyes. Often I have been asked,

"What can I do to help??"

It has been my honor and privilege to ask for and receive your love. There is no greater gift than Love that you will give to anyone ever. You have already given to Zachary and to our family the very best you have to share.

IF (and believe me this is not a test of your love--you have already passed that test with flying colors!!!) you would like to make a lasting tribute to Zachary and support him in his quest to 'help people' I have a new way for you to help. Please consider joining with our family, through the month of April, in a campaign to further support the extraordinary cancer research being conducted by the team at the University of Nebraska.

Our family will match, dollar for dollar, any donation you choose to share through the end of the month of April. Simply write a tax deductible check to the 'University of Nebraska Foundation' and send it to me.

Or, click on this Team Zachary link and go to the University of Nebraska Foundation website where you can contribute by credit card: www.nufoundation.org/teamzachary.

Please only contribute to this effort if this is something you feel compelled to do. We have chosen to support this extraordinary world-class research program because

• We have seen the results first hand.
• 100% of your contribution will go directly to an undesignated cancer research fund (established for Team Zachary) which provides the program maximum opportunity to leverage even larger grants.
• None of this money will benefit Zachary's outcome. His experience has benefited from those who wrote checks to this program 10 and 20 years ago.

Whether you started following Zachary's story with the reading of this message today or have known him all 26 years of his life, what is true is that he has swept us along on this journey. His quest for greater compassion is born from a deep understanding that life is about something bigger than him or even his physical survival. It is this sense of connectedness that after 9-11 and a bike trip to Ground Zero in NYC compelled him to join the army and eventually delivered him to Iraq. It is this sense of connectedness that, even now, yearns to practice greater compassion and invites us to do the same.

If today's message helps to answer for you the question "What can I do?" I am grateful.

Dear Team Zachary,

And Elton John sings, '....I simply love you, more than I love life itself. And I guess that's why they call it the blues.....'

I have yet to catch my breath from my last trip to Omaha. Gosh it was difficult! Zachary is such an amazing man.

The medical update hasn't changed that much since the last time. He is still on 'sips and chips' meaning that he only gets to eat ice cube shavings. His skin is still very painful. But they have moved him in the last day or two to the Lied Transplant unit--the one that is more like a hotel than a hospital room but it's housed in the hospital with lots of support.

Here is a story I thought you'd like from the visit last week.

He and I are in his hospital room and a nurse comes in. We are all chatting it up having a lovely time when the nurse comments to Zachary, 'you are so brave!'

Zachary looks at her and his face gets very strained and the room some how loses all its air and he begins to cry. Tears are rolling down his face. The nurse and I are frozen in place. Through his tears he says, "ARE YOU KIDDING ME??? I never would have this much strength! I would have given up long ago. I have to ask for help all the time."

The room was so quiet I could hear my own breath. And then he looks at his cup which is holding his 'sips and chips' and says, "OH MY GOSH, I GOTTA EAT! MY DINNER IS MELTING!!" And we all start to laugh.

My love to you,

Ann

I am in Omaha today. Zachary was admitted into the hospital this weekend when he started having symptoms of Graft-vs-Host disease.

To be honest with you, when I saw him it took my breath away. He has lost a lot of weight and looks well ... like a cancer patient who has been going through this for a long, long time. One of the first things he told me was that he couldn't even comfortably pick up a tissue without discomfort.

Some Graft-vs-Host disease is good because it means that it is fighting the lymphoma. Of course our son, being the overachiever that he is, has gone a little overboard and needs to be monitored. This is NOT life threatening at this point. It is painful. It is miserable. He looks bad but this is all just part of it. We had the pleasure of seeing Dr. Vose yesterday who said, "yeah, this is to be expected at this stage. It's miserable, isn't it?? This is why we wanted you to stay close to us for monitoring."

Ann's update:

Living in the present moment takes all the courage and will I can muster. I want to get scared but fear lives in the future. I am noticing how much we let 'outrage' steal from us the Now moments...

I went to see Zachary this morning in his hospital room and he was sitting up in bed looking just as charming as he could be. "Good Morning Ann! It's so nice to see you."

No fever, no real discomfort, no memory loss, total control of all body functions.... Life is darn good here at the Lied Transplant Center!! Dara and I had breakfast this morning and were saying that this could not have gone better.

Believe me, I know the risks involved in the next couple of months. I have sat in nearly all of his doctor's appointments. I know that the probability of his survival is not so great. I've been paying attention. But that's the thing. I HAVE been paying attention. And what I know for sure is that I don't know. Zachary is a physical and spiritual anomaly. He just keeps coming back. It is humbling to see someone fight to live like he has. Humbling. I told Zachary this morning that I would not disrespect him so much as to stand around waiting for something bad to happen. Waiting for disaster is NOT a plan I am willing to execute.

On the day that Zachary was airlifted to Omaha in May, Michael and I went driving looking for a place to eat. It was pouring down rain--the kind of rain that hurts when it hits your skin. We parked the car on the street and ran into a restaurant. We had no idea where we were and we certainly didn't have reservations. As it happened, it was a very nice place and we looked like drenched sewer rats.

I have spent most of the day thinking about living not dying.

I've said this before but I'm gonna say it again. To me, the miracle is not that any of us die but that we have a moment on this earth. That's amazing! And for me the million-dollar question is not who will be alive in a year but what am I going to do with the day that I have? How will I invest this precious day??

Medical Update:

If you want some REAL powerful medicine, have your best friend come and visit you for a couple of days. Levi, you are the best of the best. No medicine is better than a lifetime of friendship and love.

Zachary is running out of medical options. If he decided to do nothing, his survival would be 30 days or less.

Oh, and another thing! I wanna KNOW. I wanna know why things happen. I wanna know why MY kid who is so charming and wonderful and kind and smart and would be a good dad if given the chance, why is HE sick. And then people who, from my perspective, are just taking up air and being really nasty while they do nothing live well into there 80's. What's up with that?? I wanna know. I want some answers. And for the record, I wanted the answer yesterday or the day before that.

If in telling his story, YOUR life is improved, then his life has served a worthy purpose.

What have I learned?

Listen. Pay attention. Pay close attention. Go to the best place you possibly can go if you need specialized treatment and then Pay Attention. I truly believe that we are in best place in the world for Zachary and in the last couple of days, as a family, we had to really push for an outcome that we thought best. Fortunately one quality of a great team is that everyone is listening. As a patient and as a family member you can know what a doctor simply cannot know. Speak Up. If you need long term care and don't feel like you're on a team or being listened to, go somewhere else.

What a couple of days we have had! I have waited to write for two reasons. One is that I am at a total loss for what to say. The other is that I have never had SO much to say. This communication is going to be written in two parts. Part one is "just the facts." The second is from my journal. It isn't polished. It really is just 'cut and pasted' from what I originally wrote to myself.

They have found a stem cell donor who is a perfect 10 out of 10 match for Zachary.

This procedure is VERY risky. Ten percent die in the first week. It is also true that without the procedure he will die soon.

I have been humbled that anyone reads these letters I write.

What I am finding is that, when the Team Zachary letters do strike a cord with someone it is because Zachary's story is one that most people can relate to. I have had the opportunity to hear so many of your stories because I have been willing to share mine. I want you to know is that sometimes I go down the list of people I send this to and my heart is so filled with love. I hold you dear in my heart. I have found that in doing so, my heart has expanded its capacity to love and be loved. I figure the price will be the same that I pay so why not get something really, really extraordinary out of this experience!

Since last we chatted so much has happened both physically and on a profound level.

After Zachary was discharged from the ICU he was in the hospital for a few days. During that time his local oncologist Dr. Joyce took over his care. May I just say for the record that our family LOVES THAT WOMAN. Samson, Zachary’s older brother, and I were visiting him one morning in the hospital when Dr. Joyce stopped by. She asked Zachary if anyone had explained to him how painful a nonrelated donor transplant could be and how risky it is.

He said no. Then he said with tears in his eyes, ‘Dr. Joyce, I’m 26 years old. I have nothing to lose.’

And there you have it. No matter what happens, until they tell Zachary that there is ZERO hope, he’s going for full recovery. And why not??

To have a second stem cell transplant a number of things have to happen. First, his numerous very large tumors have to shrink quite a bit. This will be done with chemo over the next several months with trips to and from Omaha every three(ish) weeks or so. This is a very liquid plan. He will also be going to Bloomington Hospital most days to either receive platelets or blood.

The second thing that needs to occur is that we need to find a stem cell donor for him that is a perfect match. This is like finding a needle in a haystack. His 3 siblings were tested and very unfortunately were not a match. He is now on the national waiting list for stem cells. Before you ask, NO, you cannot be a donor to Zachary. You may be tested but it would go into the national data base. This might help someone some day but probably not Zachary. This being the major component of the plan we really need this to work--the sooner the better. It could take up to 4 months.

During that time they will be playing a very delicate game of keeping his tumors under control without giving him too much chemo.

If either the tumors or chemo are significantly out of whack, the game could well be over.

I do not understand why after so much, Zachary's PET showed numerous 9 centimeter tumors, why his fever climbs and climbs, why chemo mocks our efforts. Why every count in him in frightening low--pick a count, any count.

We are entering a time of miracles, a time of belief, of love & joy.

This is a very, very frightening time for our family and community. We want to hold on, to keep things just as they are but that never happens.

Life unfolds as it chooses. That is the truth.

The PET Scan has indicated that Zachary's active cancer remains and is growing. When this type of lymphoma comes back after serious high dose chemo it is stronger and more resistant. It therefore becomes more difficult to treat.

Statistically, 90% of transplant patients survive beyond the 1st 90 days after the procedure. Should everything go precisely according to plan and should Zachary's body respond well to the transplant, there is a 30% chance of survival for another 5 years or potentially beyond. This is not a picnic.

One of the lesson's of Zachary to our family is 'this is it!' 'There is no other moment coming.' 'Be here now'(Ram Dass). This is the great lesson Zachary continues to embody and share with all of us.

I am paying attention to this great teacher.

I'm lookin' for a miracle.

Not a tiny every day miracle, but one of epic proportion. Like Noah and the Ark, or the Cubs winning the pennant, or world peace breaking out everywhere.

I'm lookin' for a big miracle--a really BIG one.

And then it struck me....