June 13 – Difficult News

IMG_20160613_181639Following the growth of her glioma, we were due for another MRI yesterday. We reported to Kosair Brownsboro (great people!) as instructed. Because of the additional images needed (of the spine) things took longer than normal. She was back for a couple hours. When she emerged, I (Steve) kissed her on the cheek and headed into church for a meeting. Tammy stayed at the hospital with her  while she woke up. We expected a phone call with results from our doctor within a day or two.

The phone call came much more quickly than expected. While Havyn was still sleeping, the nurses called her out. The neurologist was on the phone. Havyn’s optic glioma had grown and was pressing on her eye and becoming more of a threat. They wanted us to see the ophthalmologist right away. In addition we were told a new tumor had been found… on her spine. The doctor told us it was in the thoracic vertebrae and they knew little about it. But they wanted us to get downtown (to the main children’s hospital) to meet with a neurosurgeon.

Tammy called me and I rushed back to the hospital. Even before Havyn finished waking up we got her over to the eye doctor. They looked her over but want to wait to make any calls about treatment until we know more about the spinal tumor. The doctors will coordinate treatment based on what we learn.

They also told us they were concerned about a possible “tethered cord” which seems to be a lesser concern, but a concern nonetheless. We’ll learn more about that but my understanding is the base of the spinal cord has tissue that connects it somewhere and keeps it from hanging freely as it should. We’ve known other kids with this but they’ve had more symptoms.

We made our way down to the hospital where we eventually found ourselves admitted into the neurology floor.

But nobody was able to tell us much about the tumor.

The staff here have been great. They make Havyn laugh and she does the same in return.

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