Ethan had his first appointment with the Oncologist late Friday afternoon, 5/24. The Pathology exam is about 95% complete and the results, unfortunately, remain inconclusive. There's just not a lot that they can tell us. As we've mentioned, the tumor is rare. They don't believe that they've ever seen one like it, but are still consulting some national registries. They can't even give it a name yet. They believe that it has characteristics in common with the following types of tumors:
Whatever it is, the Pathologist at JHU (Dr. Peter Burger) believes that it is indeed malignant and most like a PNET. The quandary is that because the tumor is so rare, there are not established protocols for its treatment. Dr. Horn has recommended a treatment that combines the 4 mainstream chemotherapy drugs that are typically used to treat the tumors above. The drugs include:
Chemotherapy is scary. First, because of the blood-brain barrier, its not typically as effective on brain tumors as it is on cancers located elsewhere in the body. The chemotherapy drugs are designed to destroy cells that actively grow and reproduce, hopefully including those that belong to the malignant tumor. However, the drugs don't discriminate and will destroy healthy cells as well (e.g., bone marrow, mouth, stomach, intestine, hair follicles and skin). Some of the drugs above commonly produce hearing losses, damage kidney tissue, cause loss of tendon reflexes and in 3-5% of all cases, introduce new cancers, such as leukemia. That's all the bad news. Its important to remember, though, that there is quite a bit of good news that is in our favor: 1) the Neurosurgeons believe they got a 100% resection, and 2) the tumor has not spread elsewhere into other parts of his brain or spinal cord. When weighed against a malignancy that is left untreated, the ramifications of chemotherapy are easier to accept.
Because this is a non-standard tumor, Bert & I plan to obtain 2nd and 3rd opinions from other Pediatric Neuro-oncologists regarding treatment, including Dr. Roger Packer (Children's National Medical Center) and Dr. Kenneth Cohen (The Johns Hopkins University). Ethan also has a slew of baselining tests to do prior to beginning treatment. Once we're through the tests and have selected what we believe to be his best shot at medical care, we'll begin.
As I've told others, Ethan continues to be on top of the world! This has been like an extended holiday for him... He's staying home with his Mommy, getting to play with lots of his friends and family, and is receiving lots of phone calls, cards, etc. He's really been a happy little guy! We appreciate all of your prayers and would ask that you continue to offer them.
On another topic, its very important for us to keep Ethan healthy as we begin and continue into a treatment program. He will have a weakened immune system and his good health is vitally important to him now. We definitively appreciate all of the visitors and the folks who drop things by the house for him. We ask, though, that you pay particular attention to your own health as well of the health of those you've been exposed to (through work, family, school, church, etc.). If you believe you're sick or have come into contact with someone who is, please respect our need to keep him healthy and re-schedule a visit for another time. I hope that this does not hurt anyone's feelings and that everyone realizes that this is just a new part of our "normal" life.
I'll pass more information along as we get closer to selecting his medical team and prepare to begin treatment. Thank you again for all of your support.
Regards,
Kim, Bert, Ethan and Kyra