Dear Zachary support team,

Most of you have been on the roller coaster that is Zachary's health. Some of you I just added because I thought you would want to know and more to the point could possibly be helpful. The last place I left us on our on-going saga, I was 'walking on sunshine' and Zachary was so close to healed.

In a nutshell, here is the current situation. The issue which confounded Zachary's treatment in the beginning has now returned to take center stage once again. No one finally knows what the diagnosis is of his illness and therefore there is no certainty about how to treat it. I believe it is accurate that he had a form of Hodgkin's Lymphoma in the upper part of his body and I believe it is accurate that as a result of his chemo treatment the past 6 months he is now free of this.

Here is the paradox, the most-recent biopsy confirmed that in the most suspicious tumor there was no cancer. However, the most recent PET CT shows growing masses and nodules and a level of metabolic activity consistent with a growing cancer. The physicians who have reviewed it all believe it is cancer and probably a transformed non-Hodgkin's lymphoma (which was suspected in the beginning but has never been located in the biopsies).

Ann Have these masses been biopsied?

What this means in my kindergarten language is this: he now has numerous masses which he didn't have about a month ago. His oncologist started to cry when she got the results last time when his SUV's were 20 (3 is normal); they are now at 27. We are most definitely going in the wrong direction. The problem is that we don't know what the heck is wrong with him. There is not a clear diagnosis.

We are resistant, especially without a clear diagnosis, to starting the more severe non-Hodgkin's chemo (CHOP, etc.) which will certainly further compromise Zachary's immune system while also adding to his cardiac toxicity levels.

Understandable

We likewise wish to rule out the possibility that what the PET CT shows could in fact be an infection or something related to the benign growing tumors (granulomatous inflammation) which may be related to something he picked up overseas or radioactive materials that he was likely exposed to in Iraq, etc.

Yes Very important

Clearly, if whatever disease that remains can be treated by antibiotics rather than surgery or chemo, we wish to explore this option first.

Yes absolutely

If your eyes are glazing over by now, be kind to yourself. You're not alone.

Here is where we need help.

Although chemo may be the only next option, his body will not tolerate much more. They are already doing 'calculations' to see what they believe his heart could take. We need to get the next round of diagnosis right.

Yes before you do anything else this is critical to determine wheter this is recurrent cancer or something else

We don't know where to go. Mayo? Stanford? Cleveland Clinic? If we knew he had __________ then we would simply ask who in the country treats this best and be there tomorrow.

Right If it is a lymphoma there are every good folks at Stanford but also several excellent physicians here in Seattle Where do you live?

Here is what I would like you to consider: ask yourself, a colleague who might know, your own oncologist, someone in the military (Zachary is a vet), someone in the health care field- If you had a freak case which you couldn't solve and needed a great person/team to solve a medical problem, where would you go or who would be in a position to know? For those who watch TV, we are looking for the real Dr. House, the doctor you go to when you know you don't know. We are looking for overlap. '20 people said _____.' This is a very stressful time for our family and, while we are very grateful for your thoughts, prayers, and input, it is sometimes difficult to manage phone calls right now. If you do come up with ideas or input that might be helpful, it would be great if you could let us know by email.

Last time I ended with a line from a song. Today I have another partial line-- one from the Dixie Chicks: "I'm not ready to make nice. I'm not ready to back down. I'm still mad as hell and I don't have time to go round and round and round.." Our family is profoundly grateful for your support and love. There are so many faiths represented on this team. We can all agree there is a power that pulls the tides and keeps the stars in line. Whatever you call that power, please ask that we are given strength to remember that we are not finally in charge and that the world is unfolding exactly as it should.

Love,

Ann