Sunday, July 13, 2008

So far, so good

Update # 2, around the end of November 2007, after about one month of treatment -

Hello friends,

Just wanted to update everyone on Mielle's situation. I won't lie, it's been a challenging month dealing with the meds she is on. The prednisone really messes with Mielle's temperament, making her mood swing wildly (and I mean WILDLY). Super hyper and manically happy one moment, completely falling apart in pieces the next. It's been exhausting trying to navigate through this each day, but we're managing and lately we have had some better days. Not sure if that's just a "some good days, some bad days" kind of thing, or if things are actually improving in a meaningful way. The doc says the "moodiness" (understatement!!) goes away after "a few weeks", but then again he never even told (warned) us about that particular side effect in the first place, and he talks about it in that "pooh pooh" kind of way that old-school doctors have, as if it's no big deal in the first place, so... I'm skeptical! But I still hope that he's right!

The other med she's on, methotrexate, is only once a week and seems to really knock her out when she takes it. We figured out that it's better to give that one late in the day so she can just konk out and go to bed.

Okay, so that's the bad news. The really, really good news is that we are getting the feeling that she is responding to the meds. Just in the last few days, she has been noticeably stronger in very small, but very tangible ways. It is a huge relief to see some results, however subtle. We know that it is going to take time for her to get her full strength back, but it's really wonderful to see some positive signs that she is on the mend.

One weird development: when speaking with the school nurse about this, she told me that there is another girl at Mielle's school that has this disease... !!!! I've spoken with the mom on the phone, and we have plans to get together and probably get the families together also. Their daughter just went off her meds three months ago, after three years of treatment. She was diagnosed right before she turned 4, so she's 7 now and in 2nd grade at Mielle's school. Her little brother is in kindergarten there, but he's not in Mielle's class. Anyway, this mom (Michelle is her name) seems very ready to reach out to us, and I think it will help us tremendously to share experiences and see a real live example of another family that got through this situation, and is now on the other side of it. Mielle is excited to meet Kendall and I hope it will help her as well.

We are so blessed in our community of friends. You have rallied around us in a way that really squeezes my heart. Thank you so much to everyone, for your love and support. We are feeling every bit of it, whether you are here in Alameda and stopping by for play dates, or you're far away and sending your love and positivity to us from a distance. We feel and appreciate all of it.

It's hard, but we're managing. It still feels very surreal at times, that this is happening to her and to us. It's really bizarre to be pumping such powerful pharmaceuticals into her tiny little body, but at the same time I'm so thankful that we have a treatment for her. It's a love/hate relationship with the treatment, I guess.

I really hope that the darkest days are already behind us; now that we can actually see some signs that the meds are working, things definitely feel more hopeful. If Mielle responds well to the treatment, then we should be able to begin reducing the prednisone dose at some point relatively soon, hopefully not longer than two more months from now (although we'll be increasing the methotrexate, which has it's own set of side effects... but supposedly not nearly as intense as the prednisone). We just have to hope that we can move through all of this as quickly and smoothly as possible. Right now, we're taking things one day at a time, and each day brings us closer to the other side.

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