More waiting…

First of all, Louisville is blessed to have a great place like Kosair. The staff here have been so friendly. This morning there were several teen volunteers who stopped by to see if there was anything we needed. They brought me a Diet Coke. For that reason, and maybe for a few more, I consider them heroes. I asked one how often he does this. “6 hours a day, twice a week.” In a narcissistic, self-absorbed world, it’s nice to see people who are willing to sacrifice their time to help someone else in need. And yes, Diet Coke is a need on days like these. 🙂 Continue reading “More waiting…”


One of the doctors, a resident, just came in to meet with us. We’ll hopefully talk with a neurologist and oncologist shortly.

This doctor was able to tell us a bit more about the tumor. It’s flippin’ huge – which explains the sense of concern we felt from all of the doctors and nurses yesterday. It spans from the T4-T9 vertebrae. Continue reading “T4-T9”

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. Continue reading “June 13 – Difficult News”

Getting up to speed…

Havyn had a large cafĂ© au lait spot at birth. (Pronounced cafĂ© olĂ© which would be a place to grab a cup of coffee with a side of chips and salsa) It was the first of many spots. Those marks were the first indicator that she might have something going on behind the scenes. At about 6 months old we started to get concerned and began seeing specialists. I’ll skip lots of details for the moment, but ultimately we received the diagnosis of NF1 — Neurofibromatosis Type 1. You can research it to learn more, but it is a genetic disorder that affects 1 in 3000. Half are inherited, the other half a spontaneous occurrence. Hers is the latter. Continue reading “Getting up to speed…”