Hello Team Zachary,

First of all, thank you for your messages. I LOVED THEM.

Medical Update:

Chemo, like life is cumulative. Zachary and cancer have been together for quite a long time now. He has had so many rounds of chemo that I could not, at this point, count them if I wanted to. What that means for his body is that it is a little weaker every time he starts chemo and it takes a little bit more out of him every time. After so much, it's just getting brutal on the body. That's where we are.

His chemo is done for now. We are waiting for him to get his strength back. His blood pressure, for example, is around 80/40 which makes things like standing up a little problematic because he gets light headed.

His fever hovered around 104-106 for several days. In Omaha they really aren't that freaked out by fever unless you are a child and your brain is still developing. They give him Tylenol for a fever around 105 but he doesn't like the highs and lows of his temperature fluctuating so he would prefer to just be left alone. Because our over achieving son has both Hodgkin's and Non-Hodgkin's lymphoma he does not qualify for any of the mainstream experimental treatments currently in clinical trials.

Zachary had a chest x-ray and from the time he left his room to the time he was back in his room it took 15 minutes. He had a CAT scan done and we had the results were read by a radiologist and back to us in less than 30 minutes. For those of you who have not experienced hospital life, this is lightning speed.

Frequently asked questions:

What's the next step?

This is the question I hear most of all, and it's the million dollar question that we live with everyday. The fact is, we just don't know. The best I can do is give you an update on where things are now.

What does Zachary think of you sharing his story with everyone?

Team Zachary started with the intent of protecting our three children at home from being constantly called and asked how Zachary is doing. For a while all our phones just rang off the hook. What I realized is that our community of friends and family love Zachary (and us) and if I wasn't proactive, all anyone in our family was going to do was to talk about Zachary. I talked with Zachary and told him my idea of updating people. He said that he thought that was a great idea and that I could say anything that I wanted to say. I have practiced doing two things in my communications with you. First, I never say anything that I think would embarrass Zachary. You have no idea the whole story. Secondly, I use the pronoun 'I' instead of attempting to tell Zachary's story.

Zachary is quite clear life is to be used for good. If in telling his story, YOUR life is improved, then his life has served a worthy purpose.

What have I learned?

Kayak.com is really a great site for finding lots of air flight options. Not every airline uses it (like Southwest, which we fly quite a bit) but it's a darn good one. (Thank you Jeff Jones!)

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.

When I asked people to drop me a note the last time, I had the honor of hearing many of your stories. I have found that the sincerest response is

"Thank You for sharing your story with me."

I know that you can't do a thing about my situation any more than I can 'fix' your shared stories. The teller of a story knows there is nothing I/you can do! We're not stupid. We just want to be heard. To share our story. "Thank You for sharing your story with me." If used as a gimmick line it won't work. You have to mean it. But I will share it with you as perhaps the single greatest lesson I have learned. That and 'It's so nice to see you." If you can get your heart to a place where you can say those two things, I think you will be much better equipped to handle uncomfortable situations. I have literally had people turn the other way when they see me. I didn't take it personally. But for those of you who feel awkward sometimes, perhaps these two perspectives will help you help others.

Journal entry:

Written on Grand Cayman, January 3, 2008

The ocean is so vast and I am so tiny. Tiny. That's funny. Tiny. Like a speck of dust. Like a grain of sand.

Mostly I'm humbled. God is in my heart. What a joke. As though the vastness of the oceans or the brilliance of the galaxies or the secret as to why the leaves change color or why we have ear lobes (I'm convinced it's for earrings) could fit into my tiny weenie heart. Now don't get me wrong. It's a good heart. I have an amazing capacity for love but come on ...

Sometime I think that if I put my sword away that something bad will happen on my watch. That something that I am in charge of, responsible for will happen and I won't be able to undo it.

Like what Ann?? Someone will die?? Now that's funny too. Are you going to stop this from happening? You are something else. The cosmic tumblers are tumbling. They have been set in motion since before the oceans or the sand were here. I believe in free will and I believe in fate. There. I said it. I believe partially in fate. How else can I explain how I showed up with Michael as my partner in life?? Or Zachary as my son??

My love to you,

Ann