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Saturday, June 9, 2007 - 6:29am

On Saturday, we drove to UW Madison for a 2nd opinion to meet with Dr. Iskandar, a pediatric neurosurgeon. He provided additional details about diagnosing what type of tumor Hailey has. Her tumor is most likely a low-grade glioma. This type of tumor is incurable and treated with chemotherapy. However, there is a small chance, 5-10%, that her tumor is a germ cell tumor. This tumor can be cured and is also treated with chemotherapy. The only way to know for sure what type of tumor she has is to do a biopsy of it.

After meeting with Dr. Iskandar, we felt comfortable with his approach and recommendations. At this point in time, we have decided to have her treatment done at UW Madison.

Thursday, June 7, 2007 - 6:18am

The next day, we met with the pediatric neurosurgeon and oncologist at Childrens in Milwaukee. We learned that the tumor is 3cm in diameter and located deep her brain behind her optic nerves and above her pituitary gland. Because of its location, it is inoperable. The tumor is one of 3 types. The tumor involves the hypothalmus and is causing an extremely rare condition called diencephalic syndrome. When you read about this syndrome, it describes Hailey to a tee; weight loss around 6-12 months despite adequate eating, vomiting, happy demeanor, and able to meet most growth and development milestones except weight. There have been only a couple of hundred documented cases of this syndrome in medical journals.

Blood work was done to test for tumor markers, which will help narrow down the types of tumors. She also had a dialated eye exam to determine if her vision has been affected by the tumor yet. At our visit at Childrens, we asked that her information be sent to St. Judes for another opinion.

Reality began to set in today. Our hope going into the appointment was that the tumor was operable and curable and would resolve her vomiting.