21 May 2002:  Ethan's Post-Surgical Appointment

Ethan had his post-surgical checkup on Friday, 5/17. His bandage was removed and the incision is healing very nicely ~ although was quite a bit larger than we imagined it would be.

We didn't get a great deal of new information in terms of the Pathology report. Our Pediatric Neurosurgeon suspected that it may be another week or so. There are a few things that they know for sure about the tumor:

• It is a neuronic tumor, meaning that its cell of origin was a neuron. Because neurons do not grow and divide, damage done to a neuron by a tumor or by treatment is permanent.
  
• Ethan's tumor is believed to be very rare, making the final Pathology diagnosis complex and time-consuming
  
• The tumor has several cells within it that appear to be "bizarre". This is not exactly a comforting word to hear from a Medical Professional, but it is what it is.
  
• Some of the cells are exhibiting mitosis, or cell division. Again, probably not what we probably want to hear.

The Pathologists are trying to simulate malignant changes in a laboratory setting to narrow in on a diagnosis. At present, there are three possible contenders:

• Ganglioglioma - This is typically a small, rare, slow-growing benign tumor that frequently occurs in young children. These represent approximately 4% of all pediatric brain tumors. Malignancy (cancerous growth) and metastasis (the spreading of cancerous growth) are very rare. Surgery is standard treatment.
  
• Dysembryoplastic Neuroepithelial Tumor (DNT) - This is typically a slow-growing benign tumor. It occurs in both adults and children, and the average patient with this type of tumor is classified as Grade I. Surgery alone is often used for long-term control of this tumor; the benefits of additional radiation therapy are unclear.
  
• Primitive Neuroectodermal Tumor (PNET) - A PNET tumor (non-medullablastoma) is very rare and most frequently occurs in very young children. Many believe that the tumor originates from primitive cells left over from early development of the Central Nervous System (CNS). They are most often large, highly malignant and spread aggressively throughout the CNS. Surgery is the initial standard treatment, followed by aggressive radiation therapy delivered to the entire brain and spinal area. Many treatment protocols also include chemotherapy combinations and/or stem cell rescues. The treatment for a PNET tumor alone often causes significant neurological deficits.

On Monday night, we received a phone call from our assisting Pediatric Neurosurgeon. He reiterated to us again that the final Pathology was not yet available and may be several more days. At this time, they are leaning towards a PNET diagnosis, but not in the text-book sense. Their current thinking as of Monday night was that Ethan had a very rare breed of PNET that was not behaving in the expected manner. The bizarre shape and the mitosis were the only indicators of malignancy, but other standard malignancy indicators were absent. Further, given the size of the tumor it was unusual that the spinal area had not been infiltrated, suggesting that the tumor may not be behaving as aggressively as a text-book variety.

We've been told that Dr. Peter Burger are now leading Ethan's Diagnostic Pathology. Dr. Burger is a world-renowned Neuro-Pathologists who specializes in diagnosing difficult pediatric brain tumors.  He resides at the Johns Hopkins University. We also understand that there are people consulting on the diagnosis from Duke University, Children's National Medical Center and even the military. We are confident that when the final Pathology report does comes back, it will represent what the best available minds in the field can tell us. When we have a diagnosis, we'll proceed to obtain several opinions regarding how best to proceed for further treatment.

Bert & I would like to thank everyone for their prayers and support and ask that you continue to keep Ethan in your thoughts. While we're still optimistic, we know that we're not out of the woods and that the hardest part of this journey may very well still lie ahead. We'll share the results of the Pathology when they become final.

Warmest Regards,

Kim, Bert, Ethan and little Kyra

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Revised: 06 Mar 2006 16:45:48 -0500.