Sunday, May 31, 2009


While talking to my sweet little sis yesterday, I was idly twirling Reuben's top lock and several hairs came away. I'm aching today. I think I fooled myself into thinking it might not really happen. And am foolish enough that I'm still kind of holding out for the survival of the lashes.

Still talking to my sister, I took enough for a strawberry blonde curl, then searched the basement boxland until I found green thread. And bit it because we're not yet organized enough to have scissors and thread in the same room. And could only use one hand because the other was holding so tight to that curl. Lock and thread are both now in a cello envelope on my dresser and I'm breathing slowly and vowing not to let hair torture me anymore.

I already know he can rock bald.
I know no one will even notice because he nearly already is.
I know it will grow back once we stop filling his veins with poison.
But how poignant a reminder it is that, right now, we are.
And to think I begged "them" to start as soon as possible.



I can tell I'm pulling out "of it" a bit because I cooked (real cooking, not mixes or heating up what our new neighbor Marcie brought us for our freezer) two dinners and one breakfast this week.

New kitchen, I like you.
Even though you have dumb tile floors (tile is not my friend because any of my beloved pottery dropped on it has no chance).

Today's breakfast: crepes.

We LOVE crepes.

I favor good berry ones (my crepe is up top there) and feel like I'm extra clever for adding cinnamon because it is extra awesome.
The girls favor s u g a r. Audrey was cracking Nathan and I up when she was explaining to Marian, our food novice, that it's important not to put too much powdered sugar on a crepe. Because her hand is traditionally quite heavy in that regard (check out that baby!). She frequently informs us (every time I suggest a fruit addition) that she only uses white fillings (sugar, coconut, sometimes cream), but today made an exception for mini chocolate chips.
Marian favors cream. She still gets to eat pretty much whatever she wants, though quality of food is starting to get more important as her perfectly enriched formula tube feedings are becoming an ever smaller proportion of her diet.
Taking a clear picture of a baby without using the flash is always a feat. A baby going after whipped cream moves speedy-quick. I eventually gave up :).

We use Jeri's recipe only:

1 c. flour
1 c. milk
1/4 c. sugar
a shake of salt
2 T. oil
1 egg
1 generous splash of vanilla

Mix 'er up super well (I add the liquid a little at a time to the dry ingredients until it's pasty, to avoid lumps, then whisk the rest more quickly; Jeri puts hers in a blender).
Pour 1/3 cup batter in a hot skillet (I use 2 or 3 at a time, non-stick & cast iron, lightly greased for the first crepe), twirl it to thinly cover the bottom and bake (a low-ish medium is perfect on my stove) until just barely browning on the edges. Flip & let the crepe cook a bit on the other side, too.

When I see crepes at the store, they're practically colorless, but I love the crisp edges, so brown them a bit. I like to eat food hot, but also hate the family eating without the still-cooking mama, so I put my oven on 200' & keep throwing crepes in on an oven-safe plate until the whole batch is ready. Then we eat! (also blurry, but too pretty to delete)

Monday, May 25, 2009

good things

Also, there's this in our favor:

US News & World Report, Best Children's Hospitals: Cancer

more CHOP details
Parents Magazine keeps ranking our favorite hospital #1, too (read here).

Sunday, May 24, 2009

quickie update that got long anyway since I'm that way

It's pretty much a madhouse here. I've started a couple of more serious posts, but they are not the only things not getting finished around here! So until my graceful self comes back, here's this:

The house is full of half-unpacked boxes, and so is the garage. The baby is a fussy little mess, which I'd like to blame on his chemo, but suspect it's just the three teeth that have broken through in the last two weeks. He did have a few nauseous hours on Tuesday, but we haven't given him anti-nausea meds since then. I haven't seen any changes in his tumor, but my tracking techniques aren't very technical. At least it isn't changing every day like it was a couple of weeks ago.

Treatment-wise, we're just in a waiting phase. His blood counts are supposed to be at their lowest this weekend, "in 7-10 days", and when they recover, we'll do another round (cycle? I still don't have that figured) of chemotherapy. I give him little growth factor shots each night to encourage his white cell production. We meet this week with a pediatric oncologist in Hershey, PA, where the state medical school is, and will split our care between there and the Children's Hospital of Philadelphia. Hershey is just an hour's drive from home, so that arrangement will be much easier on our family. I'm still a great believer in CHOP, and certainly any surgeries or more complicated treatment will be there, but chemo is chemo and I have full clean-technique confidence in the staff at Hershey. They have a children's hospital (a floor of the regular medical center) and a great local reputation. We've taken Marian to their ER a few times and stayed overnight once and had a very positive experience. I met the pediatric oncologist we plan on seeing this week during our stay before and she was very kind to us and willing to help as a closer-to-home bridge for Marian. Hope she feels the same way as we take her up on her offer with a new kid (insert self-pitying sigh).

We have had some good moments this week--visits with friends, sweet sister moments like the top photo documents (Reuben is a music lover), and the school's spring concert. I missed last year's because Marian & I were still in the hospital (they had a big cut-out of her face that her classmates held up) and I forgot how completely awesome elementary school concerts are. Every squirmy little kid up there is a delight. I took a lot of poor photos, but these are my two smudgy favorites. Audrey is blurry because she kept doing the sweetest little twirls, dancing to the songs her class and the chorus sang. She looked so pretty and happy.Conversely, I liked how this one of Marian framed her; purely by accident she is the only one not moving at that moment. It's such a bad photo, but it cracks me up everytime I see it. Her funny little face! The misbehavin' second graders!

Because I went into my oh-so-close-to-functional kitchen to get a bit more than a smidgen of Breyer's Triple Chocolate ice cream in a pretty little bowl (I really should show you some of my new pottery), I'm feeling pretty good now. Sweet dreams.

Tuesday, May 19, 2009

You might like to see the good Roo pics at his Aunt Christine's blog:

(all on the day of Marian's big bash, where Christine took lots of fantastic photos that I will one day sort through and post...)


If this is how he attacks his peas, just imagine what a cancer fighter he must be!

(wow! I don't think any boxes are visible in this photo, taken yesterday afternoon. I didn't think there was a single angle in our house that avoids them.)

Yesterday Reuben was a bit fussy, today he is sadly quite vomit-y. Must go call pharmacies about that Zofran Rx I didn't think I needed...

Sunday, May 17, 2009


Mustn't get ahead of ourselves, but both self & doctor think his tumor is at least less lumpy where it was getting lumpier and not growing and likely a bit smaller this morning.

(that means this is working!)

thank you friends who pray and send love and good thoughts and know that the Goates are lucky in some ways.

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.

Wednesday, May 13, 2009

I just marched my suitcases and bags to 3South and
There are sick kids there!

It will be much harder to stay in cheerful denial here.


Reuben's visiting those kind folks (Interventional Radiology) this morning. He slipped off to sleep naturally because it had been an exhausting morning, and leaving him peaceful was even better than leaving him Versed-giggly. Plus, this time we sent for the IV team right away, so his IV was a "one-poke!" as Marian delightedly calls them (3 tries yesterday). We like those experts. And it was a good reminder that ports are awesome, even if it will leave a scar--pretty much guaranteed access. A port-a-cath is under the skin, so does involve some poking to use, but it is quick and Lidocained poking. I'm happy we don't need dangling "tubies", which hinder both bathing and cuddling. Reuben is just dabbling in solid food, so I'm hoping that easy-to-digest golden breastmilk will see him through all of this without the feeding sort of tubes, either. Mouth sores, stay away!!

We'll be in room 11, 3South. I'm off to fetch the suitcase.

(Pretending I'm still craft blogging:) I brought embroidery for naptimes. I want to do this Mary Oliver quote for my living room:

Tell me, what is it you plan to do
With your one wild and precious life?

Sort of wander-y. With sunshine.

Tuesday, May 12, 2009

Today's CT scan showed lovely clear lungs for Reuben. Cancer free! Metastasis to his lungs was the most likely spread, and we have been spared that at least. I have forgotten, with this medical drama, to share the good news that Marian's lung CT scan (on the same day as Reuben's sad MRI) looked marvelous--more clear than last year. I'm a happy mama. The radiology report on his bone scan had not yet been completed when I left the hospital this evening, but the oncologist didn't see any new tumors.

Although the results from the samples sent to Columbus for chromosomal testing probably will not be ready until next week, we (oncologist, orthopedic surgeon, self) have decided to go ahead with prompt chemotherapy, assuming a confirmation of the preliminary infantile fibrosarcoma diagnosis. Tomorrow morning at 10:00 am, Reuben is scheduled to have surgery to place a port in his little chest, and we will start chemotherapy either tomorrow afternoon or Thursday morning.

When Reuben was a few weeks old and I was already desperately in love and feeling a quiet joy that he was so lovely and healthy, I traced a finger on his chest, marking each place he did not have one of the scars that were so familiar to me on his sister. No lung biopsy. No drainage tube between his lungs and chest wall (so painful). No Nissan fundoplication. No broviac catheter. No small incision to slide it into his heart. No port-a-cath, or its associated guiding incision.

3 of those we will have after tomorrow.

Reliving part of today's conversation with our oncologist while I dabbled in the bathroom this evening, I caught a repeat of the expression on my face when he was talking about amputations (not something we anticipate). Um....this mama was not so stoic as she thought.

Here's a link to the abstract for the most comprehensive study of infantile fibrosarcoma, if you're so inclined:
I like it because it refers to "this rare and curable disease" and "negative margins" (cases wherein the tumor disappeared with chemo and without surgery) and "alive with no evidence of disease 8 and 18 years from diagnosis." All of which I so very desperately want.

Reuben will be "inpatient" (staying in the hospital) for a few days starting tomorrow, and I'll update if I have access. I so hope I can also find a way to upload a few photos, but that may be greedy :).

I know I'm still in my careful place (haven't cried yet), but all I can think of is how crushed I am that we're missing Audrey's birthday party on Saturday. Though, unfortunately, not as crushed as she is. If you're local, please call Nathan and ask how you can help!

Now I'm going up to my room to watch American Idol, then give my baby a bath in the lovely calendula/chamomile baby wash Meg sent me that makes him smell just right. And not like a sterilized hospital. Oh, my baby!

Monday, May 11, 2009

moving on

I'm sneaking in a post at the library (between houses & between computers--how weird it is to be offline!), and Reuben is only briefly fascinated with the keyboard. I can't write much, but wanted to give a brief update.

First, we have been the beneficiaries of so much kindness that must be acknowledged. It may be months before I can unpack, but we had a mix of church and friend and Nathan's students help us move the big stuff on Thursday, then 4 of the teachers from the s' school and a couple of other friends help us pack up and move most of the rest on Friday. Today a pack of ladies from our church came to clean. Without the help, it would take us weeks in our current state of crazy (schedules & heads!), but the good feelings of love and support are still worth more to me.

Reuben and I leave this afternoon to stay at the Ronald McDonald house in Philadelphia for more tests early tomorrow morning (bone scan and CT scan) and our clinic visit with the good Dr. Aplenc (such a desperate crush I get on those doctors who really care and move little mountains for us!). I've seen the tumor grow in the last couple of days since I've taken off his dressing (I drew on him with a hyacinth pen so I could "watch" better), so we're aiming for a port placement and the start of chemotherapy on Wednesday. If all goes well, we'll be home sometime this weekend. Fingers crossed!

We remain doggedly optimistic, and Reuben remains smiley and sweet.

Thank you for your good wishes and deliveries and kindness. Life's messes also reveal its goodness; though I still refuse to believe in a God that shoves trouble in my path, I do believe in one who helps me through it, and also believe he usually uses you to do it.

Friday, May 8, 2009


Thanks so much for all of your kind words and thoughts and prayers and goodness. I'll be a bit e-dark over the weekend while we move and get our internet transferred (Nathan has often said he'd choose internet over running water & it's being tested). Reuben is doing great.

(not our house, just an image from the real estate agent's site of the van we used)

Wednesday, May 6, 2009



Infantile fibrosarcoma, which is, of course, extremely rare.
But also highly treatable, usually with chemotherapy followed by surgery. Full pathology results will be done in a couple of days and we will be making treatment plans early next week.

That's the affected shoulder, slung so casually over the armrest. Reuben reached six months on Monday, and I'm copying Elise (except with a wilde animal--thanks, Grandma & Grandpa Goates!--and, alas!, I didn't catch on until month #2).

This will be a very long story and, I hope, one that I will take the time to tell. Nathan has been encouraging me to write more and certainly I will need such self therapy. My head is spinning with so much information and emotion, but tonight? Tonight I can only come up with choppy sentences and a cautious optimism.

If you're the praying sort, we'll accept them, of any kind. If you're the good thoughts sort, I'm a believer, too. My personal theology doesn't look for a why; I just think these things are, and we work from there. I am spending the evening feeling a tremendous amount of empathy and love for this drugged up little boy on the couch next to me. "He's a keeper," I've been saying for months. We'll do our best.

Oh, and we're moving tomorrow. And it's Audrey's birthday--my beloved oldest will be eleven!

the medical lottery

Recognize the outfit?
I've been e-silent for a few days because (1) we're in the middle of a move and (2) preoccupied with Reuben worries. Though he has been as sunny as usual (see above), I noticed (the day after Marian's celebration; great photos to come) a strange lump around his right shoulder. The last week has been spent ruling out the easy explanations. Dislocated? (ER X-ray: no) Hemangioma? (CHOP MRI & ultrasound: no) So now Nathan and I are trying to distract ourselves in a familiar-with-another-child surgery waiting area.