Our Journal Sign-up to be notified of updates
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.
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.
Wednesday, June 13, 2007 - 10:27pm
Things are starting to happen fast now. This Friday, Hailey has an appointment with a pediatric opthalmologist for Visual Field Testing at UW Madison. It will be difficult to do this test on someone so young, however, it's important to give it a try. It will serve as a baseline to monitor any clinical effects from the tumor either growing or shrinking.
This Monday, Hailey will be admitted to UW Madison in order to biopsy the tumor. She will have a high resolution MRI done of her brain and spine on Monday or Tuesday and then Dr. Iskandar will perform the biopsy on Wednesday. It should take 3 or 4 days to get the results of the biopsy. We need to all pray that it is a germ cell tumor. During our stay, we will also be able to meet with the entire oncology team. We will most likely be discharged on Saturday.
It truly feels like the calm before the storm...
Thursday, June 14, 2007 - 10:52am
As Shannon and I read our guestbook and take countless emails and phone calls from people praying for Hailey and our family, we find ourselves blown away by the love and support we have received. We just needed to let you all know how much you mean to us and how completely overwhelmed (in a good way) and strengthened we are by your thoughts and concerns. We will never be able to fully express what your love and prayers have meant and will mean in the difficult times ahead. The toughest days are likely yet to come, but we do not feel alone and we are more determined than ever to fight for our little girl and her sister Faith. We love you all! Thank you. We will be checking our guestbook often and updating this site almost daily. Stay tuned....
Major SponsorsTeam Hailey would like to thank the following sponsors for their generous support.
Please click on their logos for more information.
For information on becoming a business sponsor of team Hailey contact us.