Tenley was just 6 years old in July of 2010 when she was diagnosed with Juvenile Pilocytic Astrocytoma, a type of brain tumor. The very next afternoon she underwent a 9 hour surgery and a 99% resection. Her recovery went fairly quickly with physical, occupational, and speech therapy, but most of all LOTS OF LOVE from family and friends. Tenley showed huge improvements throughout the following months. Sadly, in December 2010, we received the news that her tumor had started to grow back. Tenleys options for surgery are limited because the tumor is attached to a vein. We were referred by her neurosurgeon to an oncologist for chemotherapy. It has been a year since we learned that the tumor is growing. Her oncologist has recommended that we take a "watch and wait" approach. The type of brain tumor Tenley has is a slow growing, low-grade glioma so an aggressive treatment isn't always the best. We continue to make trips to Primary Children's Medical Center every three months to monitor the growth of her tumor. What we thought would be a sprint has turned into a marathon. A race Tenley is determined to win!!
Recently, on April 23, 2012, Tenley went for her appointment with her oncologist. Instead of the regular "Tenley you look great, see you in three months". We heard "the tumor has grown and her ventricles in her brain are enlarged". The next morning the Tumor Board at Primary's met to discuss Tenleys MRI results. That afternoon we got a call from her neurosurgeon who had done her first tumor resection. The news was not what we were expecting. Instead of chemo, he needed to do another surgery to resect the tumor. Why you say? The tumor was again blocking the duct that allows her cerebral spinal fluid to drain and it was causing hydrocephalus. Time wise chemotherapy would not have been effective. Could we please come the following week for a "3D" MRI ,blood work, and surgery.
As we lay in bed that night Travis and I were in a daze. Another surgery...WOW! How was Tenley going to handle the news? How would Eben handle the news? How long would our stay be this time? How much therapy? What about school, would she get to finish the 2nd grade?? Would she even be able to make it back in time for the new school year in September? But, when you have a child with cancer these things are so trivial when it comes right down to it. Surgery is what she needed.
On May 2, 2012, Tenley went in for her second surgery. We waited in the waiting room with friends and family for our updates from the OR, they come every hour and a half or so. We even passed the time with our fellow Idaho Fighter mom, Amy, while Ty was in surgery for a biopsy on his lip.
It's always a comfort to have a friend who knows exactly what your going through:) Then after an almost 5 hour surgery we got the call that Tenley was in the Intensive Care Unit recovering. This surgery had only taken half the time of her first one. The "tunnel" the doctor had made the first time was still there so working his way through her brain tissue to the tumor didn't take as long.
The surgery results are not what we hoped. Her entire third ventricle was full of tumor and was really stuck to her brain stem. 75% of the tumor has been removed but because the rest is in a spot that risks paralysis or loss of vision we opted out of more surgery. "It's going to be a life long fight for her, this is long term" are the words we hear. As a parent your heart breaks because this is your child's life.
This is the life of a child battling cancer. We fight everyday for these kids and they fight even harder to survive!!
Tenley is one tough little girl and she has made leaps and bounds in her recovery. We have passed the time in the last few weeks working hard on upcoming events for The Tenley Foundation.
It is our passion as a family to get this foundation up and running so no matter what Tenley will always have a legacy. She is so happy to help other children who are affected by cancer. Any little thing to make their lives better!
It puts a smile on her face.
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