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2/21/2017 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
On Thursday, February 9th, 2017, Madelyn was exercising on a stationary bike at school when she suddenly experienced an excruciating headache. It came on suddenly and then she began vomiting. At first we thought she might be having a migraine. I picked her up from school and brought her home. Shortly thereafter I took her to an urgent care clinic to see about getting a migraine cocktail to help with the pain. After we got home, she continued to sleep but was still complaining of her head hurting. Friday morning I contacted her pediatrician and brought her in to be looked at. We were very concerned at this point because Madelyn did not have a history of migraines and she complained that her neck was sore. She was unable to take her chin and touch her chest. Our pediatrician told us to take her to Dell Children's in Austin to be checked out.
When we arrived at the ER it was discussed that she could possibly have viral meningitis. We decided to do a CT Scan of her head first before we did a spinal tap since that has some risks. Thirty minutes later, Jason and I were called into a conference room and informed that her CT Scan showed she had a bleeding 3 to 5 cm brain tumor/mass on the back left hemisphere of her brain. She was admitted to the PICU at Dell Children's Hospital and was scheduled to have brain surgery on Monday, February 13th, to remove the tumor. She then had an MRI done of her head and spine. Everything looked clear except for the tumor on her brain. Dr. Mark Lee, head neurosurgeon at Dell, was able to remove the entire tumor and said he thought the tumor was benign and a type of PXA. Post surgery MRI showed that the tumor had been completely removed. Madelyn has never showed any neurological deficits before or after surgery. The first thing I said to her in recovery was that she was a rock star. She responded by telling me she needed an air guitar! They only had to shave the area on her head where the incision was made so you can't even tell she's had surgery. Her hair covers the incision completely.
Three days later we received the final pathology results. It was not good news. Madelyn's tumor was classified as an anaplastic PXA grade 3 tumor. It is extremely rare. There are only around 15 to 30 cases that have been reported on in medical literature. Good news is the surgeon was able to get all of the tumor out. Bad news is that it has a high chance of recurrence in her brain. So with that knowledge, the doctors say it must be treated aggressively. Madelyn will begin a six week treatment of radiation (Monday thru Friday) beginning around March 13th hopefully close to Georgetown. My husband, Jason, who is a radiation physicist himself will be closely monitoring her treatment plan.
Madelyn cannot return to school for two weeks. She must rest her brain and let it recover from surgery, She does plan to stop by and have lunch with her friends and continue with daily activities that allow her to take it easy. After that, she will begin returning to her classes at school. Many people have asked what they can do to help. We would greatly appreciate prayers. Madelyn does not want special treatment and would like her friends to treat her just as usual. We will be meeting with her entire oncology treatment team at Dell Children's on Tuesday, February 21st . Madelyn's pediatric neuro-oncologist, Dr. Virginia Harrod, has worked at St. Jude's and has consulted both MD Anderson and St. Jude's (including several others) on her course of treatment. The overwhelming consensus was that radiation is the way to proceed. I will continue to update everyone as we get more information.