Post follow-up visit update

We had our first follow-up appointment with Dr. Asselin, Trey's oncologist, two weeks ago and we're just getting around to posting the latest update. Because they believe they got most of the tumor removed, and because the biopsy they did after it was removed showed low counts of certain cells, she is sticking with her plan of careful/close monitoring. So what this means is that in June he will need to go in for an MRI and a MBIG scan, which once analyzed will give her a very good picture if what - if any - neuroblastoma is still present in his body.

Not to gross anyone out but I'm posting a picture of his incision/scar because I know a lot of you were curious about where they went in.

One thing we are trying to figure out is why he periodically makes what appear to be a somewhat uncontrollable tilting of his head towards his right shoulder. He probably does it once or twice a day, for about a couple seconds. It doesn't seem to bother him as far as being in pain, and we can't correlate it to anything obvious. It may seem like we are being over-reactive to such a minor "twitch", but with everything he's had going on we just don't want to take any chances. Brandy took him in for a EEG brain scan a few weeks ago which didn't show anything. None of the doctors he's seen have said that this is a common side effect of neuroblastoma or the surgery, so we are goign to keep pressing until we can figure out what it is. The neurologist that oversaw the EEG said he wasn't terribly concerned based on his observation of Trey.

So that's the latest. Other than that, he's doing really well. Finally figured out how to crawl and now is on his way to walking - or at least trying.

Mad love to everyone who has stepped in to babysit Trey during the work week throughout this month-and-a-half recovery period so Brandy and I can get back to work - especially Gramma Mary and Nana Kathi. Don't know what we would do without them.

For the frequent visitors

A couple people have (jokingly) given me a hard time for not posting more updates. "I want to see a new post every day". Honestly, there isn't that much to report right now. The way I see it, no news is good news. Next Monday is our first follow-up appointment since the surgery with Dr. Asselin, the oncologist, and she'll likely get Trey on a specific, regular testing schedule. More to come.

We did meet with Dr. Silberstein, the neurosurgeon, last week for a quick follow-up. He was very happy with how things went. He did talk a little about Trey's Horner's Syndrome, which is what is causing Trey's "sleepy" right eye as well as his inability to sweat on the right side of his head. This was caused by the disruption of Trey's right sympathetic nerve during the surgery, which is where they had to cut the tumor off of. You can see Trey's new look in the picture below. He's basically giving you the eye 24/7.

Dr. Silberstein said that usually it corrects itself over time. It could be a matter of months or years. In some cases, usually with adults with Horner's, they have it the rest of their lives. If this is the worst that comes out of all of this, we would be ecstatic.

Bye for now.