Answers to a few frequently asked questions

Did Jenson lose his hair?
Miraculously he kept most of it. Apparently 95% of patients lose most of their hair. So at least for now on the chemo he's currently sporting more hair than Sydney did at his age.

Jenson looks pretty healthy in the pictures... isn't that unusual?
This is often the question people are thinking but don't want to ask. Given with his disease his body overproduces white blood cells (too many white blood cells vs cancer which is too many bad cells), the oncology nurses tell us their LCH patients look really healthy and you'd never know by looking at most of them that they have such a serious disease or are on chemotherapy. This can really mess with your mind though because sometimes you look at him and just think to yourself, he doesn't look sick so can't be that sick and think "Is this just a bad nightmare and maybe I can wake up soon???". Wishful thinking.

How is the chemo going?
The chemo treatments are definitely working to some degree. He's no longer vomitting all the time (which is a big improvement) and his skin areas are definitely better but not gone. We'll know more once we have the GI biopsy in April how serious things still are. For now, we're just enjoying every happy moment with him.

How long does he feel bad from the chemo treatments?
He is typically on anti-nausea medicine for 3 days after treatments. Some chemo rounds he seems to feel worse than others. It's hard for us to tell exactly how bad he feels and for how long as he can't tell us verbally. He gets really bloated also for at least a week after so guessing that doesn't feel great when your stomach is hard as a rock. Scary thing is given he's been getting them for 7 months now, it probably seems like normal to him.

What is the scariest part?
1) Risk of infection while you're getting chemo. Your immune system is compromised because the doctors are trying to re-set it, but on top of that you have a "port" that they implant in your body which is how they administer the chemo and do blood draws. The "port" line is at risk for staf infection. So any fever means an immediate trip to the ER with lots of tests and monitoring of the tests for several days. This has happened multiple times, scariest of which was about a month ago when he wound up with a clot in his port in addition to the fever. Luckily they were able to get it cleared, but very stressful. We've also dealt with him having to be admitted because test results came back positive for staf only to later be ruled out as a "false positive".
2) Putting him under. He's already been under 4 times. I find it very scary (Doug isn't as freaked out by it).

I'll post a few more sometime soon. Thanks for all the positive feedback on creating a blog! I'm realizing this is an awesome way to keep people updated and taking stress off me as I'm not answering the same question so many times and people still feel connected.

Kristin