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.

Continue reading Zachary's story through his final months.

October 24, 2007

I am about to break your heart. We received the test results from Zachary's PET scan last night.

The high dose chemo did not work at all.

He has numerous tumors that have come back--far too many for radiation.

We have taken our best shots.

We have an appointment on November 1st in Omaha with Dr. Vose to get her best guidance as to what to do now.

Love,

Ann

And then I remember that I promised, that I looked my sweet boy right in his twinkling eyes and promised him that no matter what.......no matter what.....I would not feel sorry for him and that I will not emerge from this experience bitter. I am a woman of my word so I will crawl out of my vortex of rage.... and soon...I will see from Zachary's perspective and be filled with gratitude for the life that is ours and for all that it encompasses.

This edition of the Team Zachary update has a guest writer! It's me, Jane--Ann's sister, Zachary's aunt. I came with Ann on this trip to the Lied Transplant Center in Omaha, to visit Zachary and Dara. Having read the updates on email as you have, I had an idea of what to expect. What I've experienced surpasses what I expected in quality.

I read a brochure from the Nebraska Medical Center. Its first line is 'We believe Hope is our best medicine'.

One question I get asked quite a bit is if he was in isolation after they killed all his (well everything) white blood cells. Remember "The Boy in the Bubble" movie? No. They don't do that any more. They found that most of what makes a patient sick he carries with him in his own mouth or intestines or ... It's not that they don't believe in the germ theory, it's just that what we can do to ourselves is MUCH worse than what someone else can do to us. (Yes, they still cover their mouths when they sneeze!)

This morning we were out on our veranda of our summer home (the hospital cafeteria, which is partly outside) and the skies were so blue. There is a song, "Blue skies smilin' at me, nothing but blue skies do I see."

I've come to the conclusion that hope is a choice. I choose to believe that my boy will live.

I choose to believe that one day he will get a job that he is good at and be like other young men his age. When I am an old woman, I will have the pleasure of his company.

The next line of the song is...'never saw the sun shining so bright. Never saw things going so right....'

Once they got to Omaha he had another round of chemo like the past several. After that round of chemo, stem cell harvesting began several days later.

They needed 4 million stem cells to be harvested. The range of days it takes to harvest is from 1 to 30 days depending on the person. On Zachary's first day of harvesting he managed to give them 12 million stem cells and was done with that process in one day. How they count to 12 million I don't know!

On Saturday (8/18) they started his 'high dose' chemo. When they say 'high dose' they really mean it. Zachary met with Dr. Vose before the chemo to 'sign some papers.' I asked Zachary, 'what kind of papers?' 'Well Ann, they needed me to sign and say that if they killed me during this process I won't sue them.' 'Did you read the fine print Zachary?' 'No. For what purpose? I got the gist of it and they aren't really going to negotiate these points with me.' 'Yeah, you're right. And besides you're not going to get your money back anyway.' 'I'm kinda committed now to finishing the process.'

You may be asking, why does he need Stem Cell Transplant and what is it??

Chemotherapy generally affects cells that divide rapidly. They are used to treat cancer because cancer cells divide more often than most healthy cells. However, because bone marrow cells also divide frequently, highdose treatments can severely damage or destroy the patient's bone marrow. Without healthy bone marrow, the patient is no longer able to make the blood cells needed to carry oxygen, fight infection, and prevent bleeding. SCT can replace stem cells that were destroyed by treatment. The healthy, transplanted stem cells can restore the bone marrow's ability to produce the blood cells the patient needs. Zachary will be using his own stem cells.

This is a 'not-not-nice' procedure. Zachary's immune system will be completely wiped out and all of his blood counts will be low. He will be very fatigued and generally not feeling well. They will try to control nausea, etc. with medications. Zachary will be scheduled to return to Omaha 100 days after his transplant (with periodic checks at home with Dr. Joyce in the meantime).

Omaha is perfectly set up for his specific cancer. (I can't tell you how many times I am asked why we just didn't stay in Indiana--it was good enough for Lance Armstrong! What I have learned is cancer treatment is VERY specific. If anyone knows of someone who has testicular cancer--come to Indiana.)

But back to my mental drawing.....Picture in your mind a round building (no it's not round but stay with me). In the middle of the building is an 11 story 'hotel' with suites which include a refrigerator, microwave, two televisions, a couch and chair, a private bath and two beds. It would be like a honeymoon if not for the fact they are fighting for his life. He and Dara can order anything they want from the kitchen and it is delivered to their room where they can eat together. They could eat in the cafeteria but choose not to because he always has a drip pole on wheels that is hooked into him which is how he receives his chemo. He can get to any of his appointments within minutes and never has to leave the building. Also, there are pull cords in the room. If they ever need help any time of day, just pull the cord and an oncology nurse will be there within minutes.

I never get over the fact that one experience with cancer does not prepare you for the next. In this case that is a GREAT thing because his chemo this time has gone so well. When I say well I mean REALLY well.

“Hey, Ann, Jane just told me that Zachary is home! You may want to send out an update and tell people he’s not in a hospital bed with tubes running out of his arms.” Oops. Sorry…..

There has not been a day that has gone by when my eyes have not filled with tears--either of joy at the progress or of the terror of becoming stuck at one of these stages.  And then there is the reality that I can't hear what the medical staff tells me and I can't be a good advocate for Zachary if my heart is so involved. My heart blinds me absolutely rendering me no help to my task of care. On the other hand I love him so much.

After spending months researching, watching, discussing and talking about cancer I have come to the conclusion that it is a 1/3 science, 1/3 art and 1/3 right above throwing leaches on someone.

With Zachary's original diagnosis of cancer and subsequent treatment nothing has ever been routine or normal.  This theme continues.

If you have been following these e-mail updates, you will quickly understand that one of the most insidious and potentially cruel creations of the human heart and mind is the reality we call hope.  At best it is a roller coaster of human emotions and at worst a torturing seductress that beckons us to believe the unbelievable.  Nonetheless, we hope.

The arduous marathon Zachary has endured over the past 2 and a half years (Iraq and cancer) now appears to have been just a warm up for the next challenges to come. Through all of this he remains affirmative of his life circumstance, peaceful in his demeanor, grateful in all things and trusting of the outcome, whatever it is. His example is one by which we can all be lifted.

You cannot imagine the money this place has spent.  It's mostly private money.  When Warren Buffet started his investment company 40 years ago he started with his buddies' money, all of whom lived right here in Omaha.  One of the doctors here told us that his patient is a billionaire from Buffet stock and he can't get him on the phone because he's out planting his soybeans.  Many won't spend a dime on a car but they'll plunk down millions for the medical center.  It's just amazing.

There is a spirit of excellence in everything and I mean everything. Michael was purchasing a glass of orange juice from the cafeteria and the cashier noticed that his OJ was a little watery.  "Let me have the OJ changed out for you."  Michael said it was fine and she came back again with 'I want you to leave here only saying great things about our medical center.'  This was the cashier at the cafeteria not the head of surgery!

Omaha, Nebraska.  You gotta be kidding me.  I didn't even know where Omaha was on a map until just the day before yesterday.

It's funny where miracles come from and where hope arrives where I least expect it.  I was feeling so down recently and I was on the elevator with a tiny child who had tubes running into her.  And she was just beaming as 18 month olds can do.  Just smiling at me and flirting.

You gotta be kidding me.  Here this tiny little girl is so full of hope.  It's funny where miracles come from and where hope arrives where I least expect.

Things are moving fast here at the University of Nebraska Medical Center. But to recap, on Tuesday Zachary flew by air ambulance jet from Bloomington to Omaha, Nebraska. The team here at the UNMC is really incredible. There is an extraordinary culture of excellence throughout the organization and we feel strongly that Zachary is getting the best care humanly possible.

Zachary, while weak, feverish and not feeling so great, is doing well and is precisely where he needs to be in the recovery process. To this point he has not developed internal bleeding from the surgery which was the major concern.