Monday, April 19, 2010

Hard times ahead

Hi there, family and friends. As just about all of you know by now, we've been having some tricky health issues here. Elise started limping back in February, a little more than a month later it was decided that her leg was broken, we stayed off of it, and then started physical therapy. But she just wasn't getting better. And then this weekend, she suddenly got very much worse.

Elise is now being treated for leukemia. Just like that, the very hard months behind us come into perspective, and the months ahead begin to take shape in ways that none of us anticipated or would wish. Preliminary reports indicate ALL, but we're awaiting a bunch more test results before anything specific can be told.

It is still very early in the process, but I want everyone to know that Elise is in the very best place for her care. And we love her doctor and think you will too. And we love the nurses here. If you've got to be a kid with leukemia, you want to be right where we are at this moment. For me, the thing that really says it all is the way each new shift of nurses conversationally asks us where we're from. As in, "How far have you had to travel to get your beautiful little girl into care at this facility." We are so lucky to be local.

Until we have a more clear diagnosis, (we are learning that there are a lot of different shades of this disease), we won't really know what treatment will look like. For now, Dr. Judy (I told you I love her) tells us to anticipate 6-8 months away from school and pursuing a pretty aggressive treatment. In about 3 weeks, we will be in the market for cute hats. We'll be doing less intensive therapy for 2 years after our initial course. Elise will be immune compromised for much of this time, so Beaker is shopping for a new local(ish) home and all visitors will be required to be up to date on their vaccinations. That means all seasonal flu and H1N1 as well. There will be times when we can not have visitors, but during the times that we can, we are expected to keep our social calendar full. And we're counting on all of you to help us with that. :-)

Once I have a better idea of what we are up against, I will start compiling a list of things that we will need help with. This mostly applies to local friends (it's hard to water my plants from, say, the suburbs of Paris), but right about now if you are feeling as powerless as we are there are a few things you can do.

1. Vaccinate. Elise and thousands of kids like her are counting on not dying from things like measles and whooping cough while they fight cancer. Unless it's a specific health risk to you or your child, just vaccinate. Please.

2. Give blood! Find somewhere to do this if you can. Interestingly, they don't want our blood for Elise because it is apparently counterproductive to treatment. I am so grateful to the person who donated the blood that Elise got today-it is making so many things possible for her right now, including some of the first pain-free sleep she's had in months. It is a beautiful gift.

3. Consider joining the marrow donor registry. We won't know how far Elise's treatment will take us in the coming months, but if she needs a transplant I sure do hope the marrow is out there and waiting. I've been on the registry since the mid 1990s, and once came close to being a match for someone. Andy joined a few months back, largely because it seemed like a good idea. And it is! If you can do it.

4. Elise loves silly stories, postcards, pictures, everything. She will be feeling dramatically better in about 3 days, and will really really need a break from all of the movies, video games, books, magazines and weirdo doctors. If you'd like to send something along, organize some sort of collaborative storybook or other such fun, please do! And, if you don't have our mailing address, drop me a line and I'll provide.

5. If you must research, consider the source. My preferred source of solid information is www.caresearch.org. Our doctors are doing a bang-up job of detailing options and helping us access information and support. We have no need for second guessing or anger at the doctors. Again, we are very, very confident in our doctors and I'm really counting on all of our friends to help keep a positive focus on Elise.

That is about all I have in me for the moment. I'll update (Facebook, blog) as we have more information and I'm able to sit and type it out. We love you, our marvelous support network.

5 comments:

Chicago Sarah said...

I love you all, and love your approach to this. Your Chicago group is solid behind you all, and...we're vaccinated! Ready! *hugs*
Sarah & boy

Nichole said...

Although we've not met, I am Andy's cousin, Nichole (Kathy is my biological Mom). We recently had a baby daughter (Ava 2/20/2010), and I struggle to imagine what you must be going through. We donated her cord blood & I would be willing to be tested for any kind of donation that Elise may need, if I could be a match. Our thoughts are with you.

Niki Naeve said...

I'm so glad to hear what great care you and Elise are getting.

My mom's BFF just beat a type of leukemia - she's in Michigan, doing well (though jokingly referring to her new immune system as "the surfer dude,") as the donor was reportedly a blonde young guy with a penchant for surfing.) I'm sure she'd speak with you if you feel in need of such a voice.

Joe said...

I'm glad you're right on top of the treatment and only wish you the best.

StevoR said...

Best wishes - hope Elise recovers fully & soon.

- a.k.a. Messier Tidy Upper from the BA blog.