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long one

2010-02-22 - 9:00 a.m.

I have two muffins about whom I need to write. First, however, I also want to talk about going back to get my PhD. - and ideas I have for that bad-ass-no-one-will-ever-read-but-me dissertation. I (obviously) want it to be about the world of pediatric cancer. I have ideas. A few, actually. One is to find out the necessity of having ICU trained staff and two fully-equipped ICU rooms on our hem/onc unit. This would reduce our inpatient beds from 24 to 22 - but, by the time I get my PhD., I bet our bed-space will have doubled. And this is not to say that we don't have the capablities of treating patients when they're close to (or already should be) ICU patients. The only difference between the ICU and us is ventilators. Seriously - that's it. And we all know our kids and know how they look when they're going septic or having other difficulties that eventually lead to an ICU transfer. Anyway, this idea is my least favorite.
My second idea is to find out what it's like to be a "hospital kid". We are lucky enough to have this amazing clinic for survivors of childhood cancer. The oldest patient is 67. I'd LOVE to do a research study and find out how spending a good portion of their childhood changed their outcome on life, etc. versus people who had a "standard" childhood. However, the idea of finding a definition for a "standard/normal" childhood will be IMPOSSIBLE. Who has a normal childhood anyway??!?!
Third idea is my most recent and one for which I think I'd (sadly) have more subjects and I don't think there would need to be a comparison group of "normal". And, so far, it's my most favorite. And (again, sadly) my most fave d-land buddy could participate - if she wanted, of course. I'd examine the effects of being a sibling of a "hospital kid". What it's like to see your brother/sister get sick, stay in a hospital (where you can rarely visit) when you guys should be at home, playing with one another, and then... what it's like when he/she returns home (with mom and dad who were also at the hospital without you) healthy and how dynamics at home change... or, what it's like when he/she passes away. There are so many aspects of it and, in the end, it would probably be broken down to just one miniscule part of all of these ideas, but DAMN! It would still be so interesting.
So enough of that. My first muffin is Louie. He was on our side for a few months and I learned to love him (and his overly-protective mother and "I certainly don't wear the pants in the family" father). He has AML - relapsed. He came to us in September/October. Now, he is on the bone marrow transplant side (I say "side" b/c the BMT unit is literally attached to our unit, but with doors separating us - we're like a nice big family actually - they walk through our break room, we walk through theirs, etc.). He received his BMT on 2/16 - last tuesday. He is 13 and adopted. He has a 50 year old mom and I imagine his dad is around the same age. He has a 10 year old brother at home in Cleveland - he is also adopted - he's been staying with his aunt and uncle since the whole thing started. this is part of the reasoning behind my latest dissertation interest - yes, his parents love him and they skype or talk on the phone many times a day, but how is THIS whole thing affecting him. he's ten. he has no idea what's going on down here. when louie and his mom and dad return home and they're one "happy" family again, how will that affect James? so many questions. anyway, i just wanted to write about Louie b/c he just had his transplant. and he got put on a pain pump yesterday. this is typical for BMTers, but once it happens, it's all downhill from there. next will be TPN/lipids. then, feeds if needed. and just a whole mess of things. and this is where it can get scary. graft-versus-host pops up. people code and head to the ICU. all kinds of shit. and i love louie too much. i dreamt about him and his family last night. we were all eating dinner together - tons of people were there, around a huge table - and someone died. it wasn't louie. but, people starting fighting at one end of the table. then, dude who was gonna kill other dude got dude ONTO the table and basically stabbed him to death on the table. and it was almost like a sacrifice or something. anyway, me no likie.
also, my little melany is dying. like soon. they give her less than a week now. however, she is at home so, as a few of us have talked about, it will make it all the less real for us. which can be good or bad. there are three other people on the floor who are very close to melly (that's what i call her) - cassie, liz and elise. cassie and liz started as RNs the exact same day i did. and elise started as a PCA in march of 2008. and melly came to us in november of 2007. screaming and snotting all over us and hiding from us when we JUST walked into the room. she was a terror. she was 3, going on 4 then. now, she's a big ol' 6 year old and the hospital is literally her LIFE (another reason to do dissertation idea number 2). nothing there bothers her anymore. and when she comes in to stay, it's no big deal and she loves barbies and princesses and play makeup and nail polish. and terrifying movies. she helped me get through pet semetery (or however it's weirdly spelled) and IT. she sat on my lap and we'd bundle up in her princess blanket and she'd reach behind her head, find my eyes, and cover them for me during the scary parts. this was when i was working nights. and her mom couldn't stay overnight with her. i'd get all my stuff done, and melly and i would watch scary movies until she fell asleep around 2 or 3. it was amazing. so we all know and love her. and, since hearing that she has "MaYbE two weeks..." last weekend, i've been checking the obits online. because, thankfuly, she is at home doing this dying thing. which is weird. her mom is maybe 25? and she has three other kids besides melly. and melly is the oldest. plus, one of her kids is a newborn. dad is in jail. but, that's okay b/c that is where melly is literally happiest - she has doggies, too! and she loves them - so, if it happens there, i'm good with it. but, it WILL be weird to know she is gone without having seen her leave us. however, i'm also happy to have the last memory of her be a happy one. she was in the hospital in november or december and liz, elise, and i were all working together one day - we were able to spend about twenty minutes in melly's room playing with play-doh and princesses and stuff. that is my last real memory of her. one i will treasure forever.

i think i'm done.

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