We arrived in Omaha on Tuesday morning at the University of Nebraska. The moment he was wheeled onto the oncology floor a lovely woman named Pam said, "Hi, I'm Pam and you're mine."  That started our journey on the 7th floor.  Our appointment was at 11:00.  At 10:58 Dr. Julie Vose walked in with three residents.  'Hi, I'm Dr. Vose."  She looks like a beauty queen, didn't introduce herself to anyone but Zachary and just oozed confidence--not arrogance.

Continue reading Zachary's story through the Letters from Omaha.

I don't know where to begin so let me start in the middle of the story. The last time we checked in, I believe Zachary was set for surgery on Tuesday of this week. Well.....that didn't happen.

About two weeks ago Zachary began to get very weak and tired by midmorning. This led him to go and see Dr. Joyce who is our local oncologist. What she discovered was that his white blood count and platelets were VERY low (read almost gone.) Also, his spleen had grown to twice the normal size.

If you read the subject line, it says Team Zachary. Because of the input from many, many people, we knew that the place we wanted to get Zachary was the University of Nebraska which specializes in lymphoma, and specifically to Dr. Julie Vose. Dr. Joyce called the University of Nebraska and got him admitted as a patient.

so scared. This is really serious.
 

Zachary is now scheduled for another biopsy surgery at the Indiana University Medical Center in Indianapolis on May 15th.

As you will recall, retrieving a successful biopsy containing the 'smoking gun' with some of the actual cancer cells that are generating the high metabolic activity readings is the key to achieving an accurate pathology report and diagnosis. All of this of course is critical for creating an effective treatment regimen.

On Tuesday we met with Dr. Tom Hrisomalos, an infectious disease doctor in Bloomington who is running some additional tests to further exclude the possibility that what is triggering the current 'hot spots' in his body might be some infection or anomaly other than cancer. In this case a positive result would actually be a huge plus. Today we met with Dr. Robertson who is the number one lymphoma expert in the state of Indiana.

"I am totally at a loss." "It is a very perplexing situation." "There is no guru anywhere in the country who will be able to help at this juncture." Basically, this is a very confusing case because the hot spots identified on the PET CT have not been also collaborated in the biopsies and, when he is not sick from the influence of his chemo infusions, Zachary feels good. When asked by Dr. Robertson how Zachary felt, he said he felt great, that he is getting back to running with Dara and except for when they dump chemo into him he feels well. This is the most befuddling part. If you have an aggressive cancer, you usually feel bad.

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.

...

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.

"I was somewhat surprised but I will share with you what happened. In a nutshell, no cancer was seen. Meaning no Hodgkin's Lymphoma was seen nor was there any evidence of non-Hodgkin's Lymphoma. What was seen was what is called dense sclerosis which is just tissue that is not cancerous - benign tissue basically."

...

We are a bit confused and have a level of discomfort with the situation that no amount of data will take away. His cancer has continued to develop in untraditional ways. Having said that, in the words of a favorite song, "I'm walkin' on Sunshine, yeah, yeah, and don't it feel good."

Most of Zachary's cancer has been killed off by the first four of six
rounds of Chemo.

Most.