Saturday, May 22, 2010

It's Pip Squeak Day!

All the errands have been run, prizes collected, volunteers lined up, flyers printed, last-minute details locked down. We're ready for the event and EXCITED! In all the planning, I kinda forgot how much FUN it's going to be!

Here's a shot of the hard copy newspaper:

Friday, May 21, 2010

Another Pip Squeak and some Press

We've been running around frantically preparing for our big Pip Squeak A Go Go benefit for Cure JM (details). Today we managed to get a little local press, which makes me soooo happy. I just wish I could figure out how to make this story catch on in a bigger way... I'll keep trying. In the meantime, I'm excited for the event tomorrow and I hope we are able to raise loads of cash! And I'll be saying it many times, in many ways, but I may as well begin now: THANK YOU to everyone who is helping, donating, volunteering, and attending! Here's the post about last year's event...

Friday, May 14, 2010

Another case in Alameda

About a month ago, I learned that there is a third known case of juvenile dermatomyositis here in Alameda, a six-year-old girl. Our small city of about 75,000 has three cases of a disease that is normally found in three kids out of a MILLION.

I couldn't really even write about it for a while because it just hit me like a punch in the gut. I felt simultaneously shocked, frustrated, and just very, very sad to think of another little girl, another family and all they will have to go through. I won't lie; sometimes it all just seems so... bottomless. Yet we have to keep moving forward, even if it's one teeny tiny little step at a time.

Through this, though, I was actually happy about one thing. The reason that I learned of this in the first place was the Pip Squeak A Go Go benefit we did for Cure JM last year. A friend that was involved with the event has a daughter at the same elementary school as this newly diagnosed girl, and through conversation with the girl's mom, she was able to connect the dots and realize it was the same disease. If we hadn't done that event, then we would never know about one another. And connecting with one another is powerful. So I feel really good that our efforts have paid off in this way. We are working hard on another event right now - it's coming up May 22 - and this experience has been really motivating to keep on chugging with this kind of thing. It really does make a difference.

I dearly hope that we can pull in even more people (and hopefully raise even more money) than we did last year. We're doing our best.

The news is good news

Labs back from Chicago; all looks good so the tapering continues. Mielle is now on very small doses of both methotrexate and prednisone, and if all continues to go well then she should be totally off both of them within a few months! That will leave one heavy-duty immunosuppressant, Cellcept. (That's the one that's used for transplant patients so they don't reject the new organ). She'll still be on that for some time to come, but that one doesn't seem to really cause her any troubles, so it's not that bad.

AND we found another way to give Mielle her required calcium. We've tried many different types of supplements, from calcium gummies to calcium creamies, and she's pretty much hated them all. I don't know why I never noticed them before, but finally I got her some of the chewy chocolate kind - like tootsie rolls - and she actually likes them! After trying one, she said, "Yay, now I don't have to dread taking the calcium anymore!" And she really did DREAD it. It seems so weird, with all the stuff that she has to take, that the CALCIUM would be the thorn in her side. But there you have it.

Friday, April 16, 2010

No news is good news

The transition out of injections has been smooth. Still tapering meds, ever so slowly. The disease is still quiet.

Lenny and Mielle left today for Chicago.

I'm not as nervous as I usually am, but I'm still a little nervous.

Everything is going well, but... still.

Fingers are staying crossed.

Friday, January 22, 2010

"No Shot" Fridays have begun!

Yippeeee! It's official - no more weekly injections!

We had to celebrate this milestone, so Mielle invited some friends over for pizza and a movie, and a sparkling juice toast to No More Shots. The party was a huge success - a high-decibel gigglefest! It was the first Friday in nearly two years that did not end with an injection for my girl.

We're now giving her the methotrexate orally, and will reduce the dose each month as long as things are going well. It's been about three weeks now, I guess, and it is AWESOME. We just squirt the med on a spoon, pour some blueberry syrup over it, and down the hatch. What a difference...