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 YouThe 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.
Last week in the hospital, it was Marian's turn to benefit from a little embellishing. 
For this pattern, I just stitched over my pencil sketches directly on the fabric, using a combination of stem stitch, chain stitch, and French knots. 
Lest you think I'm having a scale problem, the wee bunny is just there to illustrate that this Butterfly is Giant-Sized.
After hours in the ER (I overheard a man in the hall say angrily, "I've been waiting for half an hour..." and smiled to myself. Novice.), we were admitted for a few days for IV antibiotics and watching until Reuben's white cell count pulled out of its "7-10 days later" trough. Home this afternoon. Finally. The prevailing theory was that it was Reuben's mouth sores (poor hoarse throat!) that spiked the fever, which mercifully never got very high and only reared its hot head once more after the initial Tylenol dosing (why oh why are kids' medications dyed so brightly? surely a tint is enough to differentiate it from water!).
Look closely. Every other kiss is unwrapped. Chocolate-y goodness. And, yes, that's "Cocoa Avenue".
See that? Bottle baby. A combination of mouth sores and teething sent Reuben on a nursing strike in the hospital and it was horrible. I took the photo to show part of why our bottle and our breast attempts were so unsuccessful: that bottle is at the side of his mouth. Chewing, chewing, chewing. Which didn't work for me. And got very little milk out of the bottle (feeding in the sling with music and swaying was ultimately our most successful approach. Sometimes I even tilted the bottle so he could get at the milk because I almost get how to use those darned things.).
Lettuce.
Plastic lids.
Fudge brownie!
Our room had the perfect view: green hills in the background for Mama and a bright construction zone just under us. Even though it was quiet for the weekend, Reuben loved staring at the colors and the pennant flags dancing in the breeze. Is truck-love already beginning? (my nephew Zander could recite--and identify--construction vehicles as soon as he could talk and I'm so looking forward to those obsessions. Did any of your children have them? I remember my brother Justin & cows, his little 3-year-old voice declaiming, "Hereford-Angus mix!" "Jersey!" as he stared out the window on family roadtrips).
My friend Sherry lent me one of her slings to try this weekend, 
and I was so glad I had it. When R felt ill and wanted to be held, the swinging support brought comforting cuddles without the usual pressure points of bony Mama holding a wiggly sad baby, and more than once it was the only trick that brought us to this happy view: sweet slumber. A quick project for what is left of the perfect fabric, methinks. It's the ring sort, but not the bulky ring sort. 
Lots and lots of IV fluids to flush out the poisons bring on puffy eyes and ohsomany diaper changes. Fun body detail: one of Reuben's chemo drugs is fruit-punch red, and it's crazy how quick (like 15 minutes later) the pink shows up in his diaper. Go, kidneys! The Hawaiian shirt was hospital-awesome: button-ups are great for port access (thank you, Stephanie!). You can see in this photo, too, his wrapped tubies: he seems to want to take his poison orally, so determined he is to bite through the lines. Burp cloth and safety pins to the rescue.
A rare moment in the crib. Gorgeous quilt courtesy of Cynthia. The little sleep bench for parent use is narrow (2 1/2 feet), but exceedingly cramped for both of us. Still, squashy side sleeping beats no sleeping at all...
Nathan and Audrey gave us eye rolls and "Packrat!" accusations, but I knew I should save this placemat* from our "room service" trays. Marian immediately saw the value, and drew us a picture for our wall: a rendering of the wee playhouse at the Hershey Ronald McDonald house. C'mon--scallops! And I moved the food off really fast to avoid condensation rings... *7 more in my suitcase.
This weekend was made awesome by two visits to the emergency room in 24 hours. We're thinking we should be able to contest the second copay, because they sent us home, you know? And we already paid them their $50 that day! (though I recognize how super-blessed we are to have insurance that covers everything else)
Marian and I are the very prepared sort, so we had crafts to do. She packed her own bag, and it was fun to see what she chose: some model magic, a stack of tissue paper circles, a little blank book, colored pencils...I got the crocheted eggs idea from resurrection fern, my muse for all things nature crochet. I love how the pink egg is perfectly zigged. Just the ordinary peaches and cream cotton yarn. These are chicky stones, drawn by Marian, but I think Easter baskets will get other crochet-hidden treats this year, too.
Nathan won't play crafts with us, but he is awfully creative and if he had it all to do over again, would probably be an architect. Our new house is cutie, but the best neighborhood in our little borough doesn't match the modern aesthetic he covets. He's compensating by drawing the most-awesome playhouse plans. You're going to be impressed.
Reuben had some fun with his sissy (who looks sick, doesn't she?).
Mostly, the Goat Boys were bored, so they walked around a lot like this and made everyone without a cute baby jealous:
And, hey, what a good chance to use an ER guerney sheet as a photo backdrop. Matches those eyes...
Then the 104'F fever came around midnight, so Nathan took Marian back for some IV antibiotics. I stayed home this time because I was needed here:
PS our friends: all is well. No more fever. Marian's just trying to catch up her sleep now. Nathan napped for an hour, then drove to Philly because it's the first race of the season!
In the interest of keeping loved ones abreast even though I kind of avoid the phone, I bring you a report on Marian's emergency trip to Philly about a week ago: everything's fine. A left-over rash and a dull couple of days. Her first virus post-transplant brought a fever, and all fevers must be initially treated as serious infections, so we found a sleepover for Audrey and hurried along to the local hospital for IV antibiotics. Once checked in, we were in their power, so had to take the ambulance to Philly. I should have taken more photos, but was unsure that I was excited about our first ride in the bus. Remarkably, both Marian and I (very pregnant and seatbelted to a 1 1/2' wide bench) slept all the way, though reports are that we bounced around a lot. Small blessings.
Why we were never really that worried: Marian in the ER.
Anyone who has even barely commented on my pregnancy knows that I'm not that excited. Yesterday I realized the core reason why: I still have my baby. Maybe I need to let her grow up. But, look! She's still my baby girl--witness the cheeks! (sleeping in this morning):
and can you see how her hair has grown in the two weeks between photos? Long enough to get messy now :)
