The bad news is we are visiting a local children’s hospital today so she can get a 4-hour IV of a new med, Rituximab, that may or may not help and carries with it the usual suspects of “rare” side effects.
You know: fever, aches and death from a brain infection.
It’s the see-saw battle we fight regularly; the tightrope we walk between employing a treatment that may finally reset her immune system to its proper working order and risking the potential dangers, short- and long-term, caused by introducing all these toxins into her system.
We have done this for nearly a decade now and we will continue to until the right combination of science and luck cures her. Giving up is not an option.
There’s nothing you kind people do during today’s infusion other than keep her in your thoughts and, if you are inclined that way, your prayers.
If you would like to do something beyond today, here’s my request:
We need runners and volunteers for the Baltimore Running Festival on Oct. 13, 2012, to help us raise money and awareness for Cure JM, the all-volunteer nonprofit that supports children like Li’l Diva as they fight this potentially debilitating and deadly disease.
People can sign up for one of five runs – marathon, marathon relay (four people running 6.5 miles each), half marathon, 5K and 1-mile Kids Fun Run. Our goal is to have at least 100 runners representing Cure JM and raise enough money to pay for an entire research study into the disease.
If you are not a runner I hold nothing against you; however, I ask that you pass this information on to a runner in your life or your readers (thanks, Angie Uncovered!) or your tweeps or your Facebook friends – heck, why not all of them? We Uncools and the 17,000 kids affected by JM worldwide would greatly appreciate it.
But know this: This year … even I’m running.
Don’t get all gushy and congratulatory, I’m only doing the 5K.
Still, given my known hatred of running, this is pretty big deal for me. As usual, My Love is doing the half-marathon again and the kids are doing the Fun Run. I’m sure all of them will finish in better shape and time than me.
The other option is to BE A VOLUNTEER, in real life at the event or a virtual one who helps raise funds for the cause without leaving home.
Here are the details on the event and how you can help as a runner or volunteer:
- Cure JM Baltimore weekend event information
- Register for the race or as a volunteer on Team Cure JM
- Travel info for attendees (big hotel discount!)
TWO UNCOOL FRIENDS RUNNING WITH US!
I’m happy to announce a couple of friends of the blog have already signed up:
- Daddy Clay of DadLabs (coming in from Texas to run the marathon)
- Oren of A Blogger and A Father (Baltimore local)
And yes, you can always just sponsor our efforts through a donation to Cure JM, but I’d really like to see you there fighting alongside with us.
UPDATE (5/30): Infusion took 9 hours but all went well. Got home at 11:30 last night and Li’l Diva is back at school this morning.