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6/30/2017 Latest post:
This is the story of our beautiful 17 year old daughter (inside AND out), Hannah Fray. She is a senior at Nashville Christian School, a lover of Christ, loves to paint, draw, read, loves music (DOLLY, Johnny Cash, Elvis, Hunter Hayes, Willie Nelson...she's an old soul except for Hunter Hayes...:), cheer, hang out with her amazing group of friends, be a little "mother" to her 11 year old brother Tyler, and spending family time with those who love her.
In the fall of 2016, Hannah slowly began to notice a tremor on her right hand. It started small, not really affecting her everyday life. As the year went on, the tremors became worse, growing in frequency and strength. She eventually lost her ability to do the things she loves to do, as well as everyday tasks. She never once complained OR wanted to be treated any differently because of this, only felt frustration with not knowing the cause or how to remedy the situation.
We started seeing her general practitioner, who referred us to a pediatric neurologist, who did some general tests on her (no scans), telling us that it was "stress and anxiety - "Honey you just need to take a deep breath and calm down. You should talk to a counselor about your stress". We then had Hannah see a family friend who happens to be a pediatric psychiatrist (one of the best in Nashville BTW...:) Dr. Kara Emerson. We had her sit down and talk to Hannah to see if she was dealing with the stress and anxiety that the neurologists were concerned about. After the two met, Dr. Emerson concluded that Hannah was a normal 17 year old, and there was more to it than just stress and anxiety. She reached out to a leading Nashville neurologist, Dr. Mike Kamenski, at St. Thomas, who finally did a thorough check on her, referring us to get an MRI, bloodwork and urine tests. These tests confirmed that Hannah has a Pilocytic Astrocytoma in the left hemisphere of her brain. It is located deep under the cortex, and adjacent to the thalamus making it tricky to get to for removal. The question became 1) Is it resectable? 2) Can you aspirate the cyst? 3) Can it be treated?
Dr. Kaminski referred us to a few surgeons, and we have ended up working with Dr. Jay Wellons, Chief of Neurological Surgery at Vanderbilt Children's Hospital. He went over Hannah's tumor with her, discussing his plan of surgery: Open a window of bone, go past the areas of speech, drain the cyst, remove the walnut-sized tumor, close the dura, and close up. Hannah should be in PICU for 2 days, then a regular room, and finally home.
We are hopeful that it is only a JPA (Juvenile Pilocytic Astrocytoma), and that Dr. Wellons can remove all of the tumor. The surgery should take 5 hours, and is currently scheduled for next Thursday, July 6th at 8:30am.
Please keep Hannah in your prayers over the next week, as surgery gets closer, and our lives change forever. It's okay to be scared, because it means you are about to do something really brave.
One of our dear family friends sent this scripture to us today, and it is so fitting: "I have heard your prayer and seen your tears. I will heal you" (2 Kings 20:5) Thanks Kiki and Scotty for this - needed to hear this today.
We will be posting updates as much as we can as our family goes through this journey next week, and the weeks ahead. Thank you for following, and please send Hannah lots of love with your messages. We will make sure she sees them.