Sunday, May 17, 2009

all eyes on you

Catnaps. That's all I've been getting. Or rather, all Reuben has been taking. So I just have time to sneak some food or (one day!) a shower, and not the long luxurious hour plus to do those and then write a blog update. Nathan and my beautiful chiquitas are here this weekend with the laptop, so later today I can down-and-then-upload some photos to share. Right now, though, I'm up after a 5 am fussy period, and writing an anniversary note to my husband. I didn't exactly plan on being here, so the print and great card I had planned are at home. Packed somewhere. Anyway, it's been an even dozen years for these Goates. And such a romantic celebration it will be this year. A real getaway, the children's hospital... So, he's getting an anniversary paper airplane. I'm thinking of this pattern (had to find one that started with a square sheet of paper because the note was already written).

Reuben has had two chemo batches so far. I get confused about what is a course and what is a cycle and what is a round and what is just a dose. From my investigative questions, I've determined that those words are just thrown around haphazardly, basically. So I'll say this: during this, our first hospital stay, he's getting ifosfamide three days in a row and doxorubicin twice, along with their accompanying free radical scavengers that will theoretically grab up some of the nasty bits they split into and prevent some of the heart damage and internal bleeding. Plus anti-nausea meds, of course. So far, it's gone pretty well. The biggest change I've noticed is having to change his diaper approximately every 3 minutes because (1) he is being loaded with fluids to ease the toxins in his kidneys and liver and (2) we don't want any of the chemo excreted in his urine to hang out too long with the china-baby English rose skin on his sweet little bottom. Since he's a little man child, this also involved changing his clothes 4 times last night because it's hard to see in the dark and prevent his free expression during a sleepy-mom change. You'd think I learned my lesson, and I did (for all of the changes but 4). I do think he felt some nausea yesterday during his infusion; he threw up a little and was extra fussy. It is, however, rather hard to really extract the chemo response from the I-keep-getting-all-of-my-naps-interrupted-and-I'm-bored-in-this-room-and-my-mom-isn't-responding-very-quickly-because-all-of-these-tubes-and-cords-keep-getting-tangled-and-she-doesn't-want-to-pull-them-out-of-my-chest. Sigh.

What does work for him is tracks 10, 11, & 12 on Justin Roberts' Yellow Bus CD. (I also recommend Pop Fly. We were gifted both at Reuben's birth from my darling friend Lisa and the whole family loves them. Nathan alternately calls him the Bob Dylan and the James Taylor of children's music.) Track 10, "Hey, Hippopotamus" especially quiets Reuben right down. I prefer Track 12; the lyrics have become my Reuben theme song:

All Eyes on You

The world is unfurled for you
So soft and light, so burning bright
So arms that cling, so hearts that sing
Don't cry now, just rest your eyes
Sorrows will fade to stars unmade
And dreams unsung, thy will be done.
Nighttime now, all eyes on you
Beautiful sight, day into night
Dark into light, cuddle up tight
And if you wake, my soul to take
By your sweet grace, time won't erase this
All eyes on you.
Your eyes are so warm and true
So soft and light, so burning bright
So arms that cling, makes my heart sing.

It's a beautiful song.

I've been back to "fairly positive" (though it could also be numb) the last two days, though Thursday night was dark, dark, dark. Pathetically wandering in the rain, eating Taco Bell late at night with my pockets stuffed with dirty Kleenexes sort of dark. We had been waiting for the diagnosis confirmation from molecular studies sent to the principle repository for solid tumors, in Columbus, OH, and it came back different. A translocation between chromosome 18 and X instead of (I was going to show off that I understood this, but then I remembered, when I found the appropriate notation and felt clueless that I don't really). So now Reuben's tumor is a synovial sarcoma. The location of the tumor and the descriptions I've read are more characteristic of a synovial tumor, so I believe it, but this type of tumor is also very rare and, thinks my very experienced oncology team, not yet reported in an infant. Well, that sounds like us. Really, that puts us in pretty much the same place: shrink with chemo (though a different combination), then surgery. Doctors are talking in terms of a cure, and his tumor isn't affecting anything vital right now (oh, how I analyze his every movement: "is that normal? did he used to hold his head like that? his hand like that? is it into the nerves?"). But the reports I've found (and I made the mistake of reading a little in parent forums when I didn't find more information--bad, bad Valerie!) lean more towards the disfiguring surgery outcome than the shrinks-away outcome. And synovial sarcomas are much more likely to metastasize than are infantile fibrosarcomas. Still, I have to remember that Reuben's hasn't and who knows how infantile synovial sarcomas act (infantile fibrosarcomas act differently, in happy ways, than those in older patients)? Because right now, his is part of a group of one.

I think that, more than the news, the change was hard. I had my carefully constructed story, built neatly around my mama heart. It was a story with a clear beginning and course and, even (dangerously), a neat little ending. I got out my emotional X-acto knife and glue stick and built what was just another house of cards. I am a great believer in the power of story and myth and personal narrative. I just think these powerful stories work better as long-term projects, or, rather, long-term projections. Preferably "handed down through the centuries", or at least generations. Rebuilding the story weekly or daily is just hard on a gal.

The story right now is very short term, but at least it has some specifics: one more dose of ifosfamide today, then we go home on Monday. I give him daily G-CSF shots to boost his marrow production and we do blood tests (locally). And when his counts are up enough to stand it, we try again. And stare hard at his little lumps (which I have seen grow during our waiting), and try to see through the mind-tricks and determine if "it" is working yet.

I have a paper airplane to make before the baby awakes.


Cynthia said...

Oh, Valerie...I am trying hard not to cry while I type this morning. Maybe it's the lack of sleep for me or just feeling your helplessness more today. I truly do send you a GIANT hug this morning. Much much love you to you.

PS hope the birthday went well for A.

sgraham said...

You bring me to tears daily with not only the sad helplessness of this little story, but also your strength. I am happy your family is there with you now, but I am also happy that Nathan and the girls were able to come BBQ with us on Friday. At least that was a small distraction for them, I wish I could do something to distract you as well. Happy Anniversary, I wish it could be more for you. know that you are loved and always in my thoughts and prayers. Let me know if there is anything I can do for your beautiful family.

Meg said...

I am so glad you had your family come and be with you, I am so sad and wish I could hug you in person. What a hard time right now, Val you are so strong. I am sending my prayers your way along with some really great hugs from us. Love you.

nweames said...

I don't know how you are doing this, I wish we could be there to help, although I realize there is very little we could do. Know you are your lovely family are in our prayers and I know at least they reach to Pennsylvania. Thanks for keeping us updated.

Snippety Gibbet said...

I am guessing that when all this is over, you will not want to see the inside of a hospital again, ever. And most certainly not the interior of a children's unit.

I don't run well on little to no sleep. Throw in stress, I'm not pleasant to be around. I hope you are finding some ways to occupy yourself and getting some breaks. Even if you have some crafty things to work on, I'm wondering if you have the opportunity to use them.

Still keeping you and your's in my thoughts and prayers. jan