Hi All! We signed up with GCT Connect awhile back but haven't had much of a chance to "connect." So I thought I would share a little bit about our family and Sebastian's story. I'm Amber (25), Sebastian's Mom. My fantastic husband is Brian (35). Brian and I have been married for six years next week. Brian is an easy going Aero Space Project Manager. In my former (pre-mom) life I was a Corporate Event Planner. These days I stay busy as the manager of our crazy-wonderful household and side-line a… Continue

First front – Family vs. Insurance Company. This is an exciting episode actually. My mother, God bless her, is very proactive and has started getting the Missouri Insurance Commission involved in getting the Cyberknife radiation treatment approved as medically necessary. Cyberknife is very expensive, but is the best chance I have. The insurance usually takes 30 days after receiving a request to process it, which does not guarantee first time approval. Advice: You must be your own advocate as the… Continue

I had a check up for my ankle yesterday. Some strange things had been going on and so we called in an early check up. I went in to get an x-ray and unfortunately, we found that my GCT is back in my bones. I have a new tumor in my fibula, right next to where my tibia tumors were. This new GCT is about the size of a golf ball. The tumor was too small to detect at my last check up in May, so it was a surprise to all of us. My Doctor told me that it's very strange for the GCT to jump to a new bone l… Continue

My last Dr's appt didn't go as well as I would have liked. I had a Xray and CT Scan and both showed non union of bone graft. I am so disappointed. I was giving the walking boot and told to walk with both crutches for 2 weeks then go down to 1 crutch for 2 more weeks and then I can go solo. I will be seeing the Dr again the first week of September. He did say that there may be a chance I can walk on my foot even though it is not healed, but then there is also a risk of the metal and screws breaki… Continue

Here's an update from today's consultations with my physician team: Ortho Surgeon - I got a second opinion about whether or not the perispinal recurrance of the primary bone tumor was operable. Both physicians from two different hospital systems here in St. Louis agree that the risk of bleeding, paralysis, and other nastiness would outweigh any potential long term benefits to surgically removing this tumor. Another round of radiation is the best option right now. I'm waiting on insurance… Continue