Thursday, May 22, 2008

peeks into our life

Our apartment is in this corner of the PRMH (Philadelphia Ronald McDonald House) . I'm ecstatic to share that all 3 windows in the corner tower are ours. Plus 5 on the other side. Really, it is cooler than our permanent digs.
Walking to the hospital for school (Marian gets an hour a day with the same lovely lady who taught her during her inpatient stay. In a very clean room that is wiped down after every student & with brand-new books, markers...). If you have super eyes and a bit of imagination, you can see my ripening belly & her mask and the stroller I decided not to replace (but I have months yet to re-decide...).
The development guy here (I forget his title) here is new to his job (and very nice) and, in making up these save-the-date flyers, wasn't finding an existing photo he liked. So he chose us! More Marian laying on the charm (She's really shy right now, actually. He was watching us interact alone the day he approached me).

Lots of sweet volunteers and--especially--guest chefs who come to cook dinner every night (such much good food here!) try to chat Mare up, but she's pretty stony. I can't blame her. She has been on permanent display for the last month + and probably wants her privacy back. Everyone stares, everyone notices. As someone who much prefers being under the radar, I cannot blame her, and say she doesn't have to talk to anyone she doesn't want to, but just ask that she not be mean. She just casts me desperate glances, I say something like, "oh, thank you very much, but she's shy right now. So many new people in the last month..." and we whisk back to our room, where she loves being. When we talk about it together, she realizes that it's great to have everyone want to be nice to you rather than want to be mean to you, but cannot play hostess to the world at age 6.

Working hard

Two things I loved about Marian today:
*Working on a recycling craft project..."Mom, do you have an empty plastic bottle and some tin foil?" Why, yes! Yes I do...
(okay, this photo is from yesterday, but she worked on it today, too. That's her craft desk in the background. Serious work done there.)

*"Will you get me your wallet? [emptying...] Don't worry [confidential laugh], you know I put all of this back. I'm not one of those c-ray-zee kids who make a mess. It just I want to play store." Which evolved into writing out little money math problems for herself on the bottom of her medication schedule and this, after I wandered off doing my own whatever: "Mom, you want to see the stairs I made?" Yup, and take a picture!

new address

I put the new address in the sidebar, but thought I'd post that it's there since comments indicated 'twas initially missed. Especially if you're a google reader blog reader like me :).

And I watched American Idol (my favorite was David Cook performing with ZZ Top. How cool would that be?) and did a little paper flower project instead of posting pics. sorry. tonight! really!

Wednesday, May 21, 2008


(internet problems again, but now we have an ethernet connection & hopes are high...)

How are you, Marian?
"mama! you know..."

yeah, she's not in the mood.
but labs yesterday looked good, she has a craft corner set-up, and thinks she looks like an elf today in a green hat Aunt Camie crocheted for her.

Monday, May 19, 2008

doing well

just got our internet figured out here & wanted to say that all is well. Marian is very cheered to be "out of that place" and we're getting settled in. They found us a room with a table, which is pretty luxe for here...

More later.

Thursday, May 15, 2008

this week

A quick way to post a bit of my sweetness. Clockwise from top right:

*She wore this tiara all Sunday after making it from a tiara kit her Grandma G sent. It inspired her to start planning her birthday party (for August...), because it was obviously a perfect birthday girl crown. She has decided a flower party will be "really great", and you can see the pod flower bobby pins we started for the pinata...oh yes, plans are being made...

*Marian adding a red wagon full of produce to our window. She was still unhooked during her bath & enjoying a bit of freedom. And looking wee and cute: look at that little pink foot!

*Playing bingo. Every Tuesday, the Child Life Department broadcasts a bingo game over one of the hospital channels. Marian has won three times, netting a card game, a beanie baby, and (this is my score!) a whole case full of Webkins trading cards. She gave 18 packs to Audrey & kept 18 for herself...

*A good smiley baldie photo :). Marian is playing with patterns here, using mosaic bits (tumbled glass & tiny ceramic tiles) left over from a project with the art therapist. She also made 3 permanently-glued tiles that I'm hoping she'll let me use as trivets. She really loved this one, and has them slated as birthday party decorations.

*Eating macaroni and cheese. We order it twice a day. She just eats a couple of tablespoons, but her food interest is encouraging. We watch Food Network for most of the day, too. I really do think this child will eat someday! It was funny to me to hear her describe why she likes mac-n-cheese. "It's just so warm and feels good." That's why it's called comfort food, baby!

*Napping and cutie. She was totally into wearing her superstar outfit yesterday...and is wearing the skirt & legwarmers today, too, though with another tee :).

*Posing with some of the photos sent from her school on her transplant day. All of the kids wore their superstar tees or blue to support Audrey & Marian. They've been fantastic.

AND: we're heading out of here this afternoon. After some worry (a crowded weekend), we did get a room at the Ronald McDonald House, and once Nathan & Audrey are here, we'll move on out. I'm mostly nervous. Her counts are still bouncing, but everything else is good, so on we go! End of my laziness, though I will still have very little other responsibility while staying in Philly. Ay. But good.

I'll let y'all know when I have the exact address.

still truckin'

Mare & I spent the evening (until midnight! bad mommy!) looking at stroller options online, so I didn't do photos. Do I get a new stroller immediately so it will be clean for my can't-get-germs Mare? Wait for the baby? Will Marian be strong enough to do her own walking? I hate big strollers (though we have a jogger & a bike trailer, that's different) with all their gets-so-sticky padding and big plastic parts. Ick. A "real" double stroller just doesn't seem palatable. One option are the "sit and stand" strollers that have a platform and little bench on the back for a toddler (or little 7-year old) to perch for a rest. But all of those are the biggie kinds, if not as biggie as the double. I like better the add-on stroller boards and this cutie little strolli rider, but am not sure how flexible their use will be and if I'll get mighty sick of taking it off & on. And still an "investment" i.e., $. I frankly just love me a little umbrella stroller, and admit I had the $9 variety until a friend took pity on my kid & gave me her old Maclaren. Really I just want to get a new Maclaren. Any not-quite-double experiences that you want to share?

I guess that our minds are on other things is a good sign that we're feeling a little less panicked about the medical situation. Which is good :).

Wednesday, May 14, 2008

A good day. Sugar pie was fun, but did succumb to a nap. ANC is up in the 700s, and plans are being made for a Friday release...eek. That's to the Ronald McDonald house a couple of miles away, but will be a new step at least.

I'm much more excited to see my honeys this weekend than to get released. I really miss Audrey today.

Since I napped, too, maybe I'll feel ambitious & post some cutie photos of my favorite baldie tonight.

Loves, V

Tuesday, May 13, 2008


and today her WBC counts are back up, a 590 ANC. So we all stop bawling...and Marian goes on being charming and cheerful. Talking about being released on Friday, though we'll be in Philly another month or so. Not planning on anything yet, of course (guard my fragile heart).

I'm hoping that I'm less depressed enough today to write thank you notes for packages...though I have given up on taping up all of our cards. They're on display in a bin, instead. Y'all have been extremely supportive (and we love it!).

Monday, May 12, 2008

Keep on praying...

Shoot. ANC took a precipitous fall to 293 this morning, which is not good. No one's trying to be particularly reassuring, either... She is CMV positive (a virus that she had as flu or cold a long time ago, but stays in the system forever, usually controlled by the immune system, but when you don't have one...), and either the activation of that virus or the antiviral medication she's on to control it can suppress the immune system, so that's a possibility. Blood tests for CMV levels are pending, and the next step is to do a marrow aspirate to check it out or an engraftment test (see how much of her blood is her sister's). She can get the pump-it-up shots, but they' won't help permanently. So it's a little wait and see and a little well, maybe try it again. Just barely not quite panic time yet.

But...Marian is super cheerful and upping her craft output like crazy. Also a chatty little thing. We're having lots of fun and she feels well and that's all good.

The dolphin baby named Alice

Once there was a baby dolphin. She had a mom and a father. She had two sisters and one brother. Her favorite food was candy jellyfish. Her favorite drink was jelly water. She liked almost everything of jelly. Except jelly macaroni. Instead of jellyfish macaroni she liked seaweed macaroni. She had a seashell crib that her grandpa made for her. She had a blanket that was knit out of seaweed; her grandma whale made it for her. She had a jellyfish pillow, made of the top of the jellyfish. She had a teddy bear that was made out of dead seaweed (kind of like for a brown color, kind of light to make it for a teddy bear). Her house was made out of seashells, like big seashells for the walls, and a big bent seashell for the roof.

All of the buildings are made out of seashells. She went to the sea grocery store. They went there to get food for the baby dolphin. She got macaroni and cheese. She got bananas. She got rice krispie treats. She got rice cakes. She got a little sweet potato, and she got some milk. They went to the next aisle that had bottles for babies and they chose a dolphin baby bottle. And then they went to the counter and spent all their money for the stuff they purchased. They went out of the grocery store.

They got into the store that had baby clothes. They bought a little onesie that had a picture of a fish. They bought some socks that had bubbles. And they bought a little jacket that had a fishing pole on it and it also had a picture of a bucket filled with three fish. And on the fishing pole was a fish. They bought some shoes. The shoes had a baby rattle on it. They had some slippers. It had a fish blowing bubbles on it. They went to the blanket aisle and they bought a blanket with a bunch of little fishies on it, and some fishies were blowing bubbles, then they went to the counter and bought all the stuff.

The last store that they're ever going to go to is all the other stuff that the babies need. They bought a rocking seahorse and they bought a rattle. They bought a bib and they bought a stroller. They bought some baby food. They bought some diapers. The picture on the diaper was bubbles and fish. They bought a ball. They bought a jellyfish squeaky toy and they bought a pacifier. Then they went to the counter and bought all the stuff.

Now they are going home. She had a thing kind of like cancer instead of cancer it was called kanre. You still have your hair fall out but half of your hair falls out. And she really did live a little good life with her family 'cause all about this stuff and she died when she was ten. Lots of dolphins have kanre. The end.

Sunday, May 11, 2008


Two bits of good news today: after dropping for 4 days, her ANC is UP again today. Ups and downs are normal at this point, but still made me nervous.

We also have good belly news. Marian has had crazy liquid diarrhea & is retaining fluid, so puffy wuffy. Overnight, she had all sorts of wet diapers and no stooling at all, and this morning, her first bm wasn't preceded by the total liquid. Too much information for those of you not immersed in the world of intestinal drama, but, believe me, it's hot stuff! We've been a bit worried about her kidneys, but this non-Lasix-induced cleansing is super good news.

Plus we're cheerful and wearing a blue tiara from the kit grandma sent :).

Happy mother's day, y'all (Nathan is still in Nashville and I'm not, and both situations make us miss our southern home something awful. We'll be looking for opportunities....).

Love, Valerie

Saturday, May 10, 2008


First, thank you for visiting Marian's blog. I read all of your comments, and most of them to her (she's occasionally anti-computer...I think because it can suck me away). Feeling the love & so appreciating it.

Although we technically can receive visitors with certain precautions, we've discouraged it in general: the less bugs the better. Since our home is a couple of hours away, no one's really biting to come, anyway, so this has not (I hope!) made us unpopular with our friends (and family who would fly out at the slightest word if we needed them. "This fall after the baby's born," I say). So it's been only eagerly anticipated weekend visits from Audrey and Daddy. And Grandma Donna when she was so kindly here for a month.This weekend, Audrey & Nathan are in Nashville living it up with our beloved friends there (AS I TYPE THERE IS BBQ FUN I AM SO JEALOUS! ) because Nathan (ta da!) graduated yesterday from Vanderbilt and is now very officially, as Marian puts it, "a doctor of philocity." They were lucky to have Nathan's parents there, too...anyway, I digress. My point here is that they could not visit (okay because we saw them Wednesday--Audrey's birthday!--before we left) us this weekend, so I was lucky to arrange another visitor today: Marian's teacher. I cannot even tell you how much Marian loves this woman, who is so kind as to think the particular situation of her one-year loan as the first grade teacher at the girls' school may have been kindly arranged by Providence so that she could be inspired by Marian. Quite the other way around, think we, and have indicated so in more than one family prayer in the Goates household...

I didn't tell Marian that she may be coming until the night before, because plans were not yet firm, but ooo did she wiggle on her little behind in joy & satisfaction. They talked for 2 1/2 hours and she grinned the whole time. Thank you, Konnie. You really made our day.
First hugs.
Looking at a scrapbook of the first and second grade and their "partners" notes to Marian. If you look closely on the cover, you can see three awesome photos: one of a framed photo of Marian that sits at her old desk. The kids turn "her" so they can see her grinning face & she now has to rotate tables because there was jealousy... another shows two of her friends posing with the photo, and the third her cutie-patootie 2nd grade partner, Nate, holding her photo and missing her (he has been such a darling friend to her all year).

I also must mention that, beside a good joke book and book of children's classics and 2 envelopes FAT with cards from the first grade and university students in the Education Department who help at the school, we received a most fantastic activity book custom designed by the third grade class: pages and pages of mazes, color-by-numbers, math sheets, survey-the-nurses tally darling. And Marian looked through EVERY page while she was here. Which took a considerable amount of time; they must have been working on it for a long time. Have I told you how much I love the girls' school?

Thursday, May 8, 2008


I walked out to the mailboxes with a snack, a purple petunia shipment (hedgie family and tiny mouse) I packaged while I was home, and a (late) Mother's Day package. In the corridor on the way out, I saw a man who caught my attention: standing so formally. Why the suit and, especially, boutonnière? Then I saw, walking past, chomping on my apple: a guerney with a body bag. Funeral home.

When I walked back, the guerney was gone, but I heard the mother.

Day +15

I loved coming home (yes, I just typed "home" to refer to the hospital, and decided to let it stay--look how absorbed I am in this!) from real-home and seeing how much Marian has turned a corner. Silly and interested and marching backwards in the hall with her physical therapist.

Her counts have been down the last couple of days, but I am assured that ups and downs in this stage are normal for transplant patients.

Tuesday, May 6, 2008

Day +13

Camp was really blissful, and I didn't worry nearly as much as I had planned on :). Lots of kind words about my girls, and lovely comments about reading here daily (thank you, GBLUES family!) and questions about Marian from sweet students in all of the grades. Perfectly gorgeous 60s and 70s weather and a little embroidery on the side. I have loved being with Audrey.

Reports from the hospital say Marian is in a jolly mood today and escaped any fevers last night. I hear there was a nasty fasting-for-a-CAT scan & problematic IV placement (I think for the contrast), but the CAT scan (looking for something fungal) didn't show any problems and, since the fever is gone, it's a good assumption that the previous ones were, in fact, part of the engraftment. Her ANC in 3600-something, and they restarted her feeds. Getting her off of IV food and sustaining weight on formula again will be the next goal, and once that's taken care of, we're OUT. It really seems unlikely to me....the D has been really horrible.

Daddy talked her into a session with the clippers, and she's at least buzzed (a closer shave made her too nervous). He says she just has some patches on the tops and sides, and is darling in her first scarf today. I'm bringing the batches this evening.

Thank you for your good will and prayers. They're working!

Much love, V

Sunday, May 4, 2008

Day +11

I'm home with Audrey for a little bit of girl time, which we are both excited about, though I'm a bit panicked about leaving Marian in the hospital for so long without me. I'll admit she's in the best of hands--the great nurses...oh, and her beloved daddy ;)--but doesn't she need me? I need her!

But I stepped out of the car and was H O M E and instantly smelled the lilacs and heard the church bells chiming (we live on the main street in a bitty town full of beautiful churches). I get to see lots of my darling yards' perennials bloom that I was missing and I get to be with my sweetie tweetie Audrey at her school's awesome camp for the next two days. So don't expect to hear from me; I'll be at Camp Nawakwa!

Marian continues to be feverish and her blood cultures continue to be negative, so all agree that it's just her body's reaction to engraftment: those new white cells are really going to work! It's sad, though, because she is feeling her worst right now. And the hair is going quickly, which is just a mess and gets in things. Sigh. But still all is good news & her PICC line keeps working.

Saturday, May 3, 2008

the house that love built

I am so into the Ronald McDonald House. Such an emotional experience for me every time I am there. Like the kind words (and cards and letters and packages and prayers) from each of you, it's part of the joy of this experience--getting to witness so much goodness and earnest effort. I even feel lucky.

See "our" house, the very first, here:

Day +10

A smiley face on our blood count report today from the nurse:

100 cells on the slide
1000 WBC/ul
hemoglobin 11.6 g/dL
46,000 platelets
ANC: 660

hair loss beginning in earnest (today's bath will be interesting....)

Marian is extremely preoccupied with the fact that Daddy will be here in under 2 hours. She misses him something fierce. And gets to spend a few days with him; I'm heading back to Shippensburg to spend a couple of days with Audrey and go to camp with her. Everyone involved is excited ;).

& for those as fascinated as me:






# cells

Normal range

5.0-14.5 thousand/ul

11.5-15.5 g/dL

150-400 thousand/ul

Sighted on slide in a defined field


































































































Friday, May 2, 2008

A little bit of lightheartedness

All photos in the last couple of days, that show Marian's cheery little spirit is still there, even if she is also tired and grumpy, too.

First, goofy grins for her ice. Ice from the machine, even though it's that cool easy-to-bite kind, is not sterile enough, so I make her custom ice chips by freezing 1/3 bottle of fresh water (meaning it hasn't been opened longer than 1 minute...that's hyperbole, we're allowed 4 hours before is is suddenly unclean), then smashing the bottle on the floor until it is crushed enough to shake out chips. Then into a clean new cup to be eaten with an individually-wrapped plastic spoon. She loves it.
Bathtime karaoke. When we were readying for her bath Wednesday, she caught up the end of her feeding extension (just used for medicines right now because she is all IV--TPN--nutrition) and started singing. So I had to grab the camera and make her do it again.A bit of energy for crafting yesterday, so I pulled out the bin and let her choose (my choices get a lot of "NO!"s lately). She stickered a tin. We've a rich sticker library these days from packages and her trips to Michaels with the $ she earned via project superstar. She had me decorate the bottom with some bits of colorful twine sent to us by my sister's coolio mother-in-law. And did a weird pose with them...

Day +9: more from mom

Reading with Miss Joan during today's school session. Her teacher is a lovely, gentle person. And Marian reads for her! (won't for me).

I can't get much blogging out the the little one lately, though the last really was her.

The "new cells!" pronouncement really is an exciting one: it's a sign that Audrey's marrow has started producing a measurable quantity of new cells. We won't have "for sure" data that we're seeing Audrey's cells rather than Marian's cells until 30 days, when a blood sample will be PCR amplified and compared to samples taken from both girls before everything began, but the general assumption, particularly this early is a happy "yes." Daily blood counts are generally done by machine, but a smear is visually checked as well, counting the number of white cells in a defined field. We've had 0-0-0..., then today: 10! Her ANC, or absolute neutrophil count, is now 320, again after some time at "0" (normal is >1500/microliter). A healthy batch of newbies. Neutrophils are a type of white blood cell that fights infection, little warriors that rush at infection and suicide burst with a little splash of peroxide; their dead little selves are much of what you see in pus. This type of white blood cell is particularly used to track the development of new cells because they have a lifespan of less than a day, so we are assured that these are not residual white blood cells, but fresh-made beauties whose numbers testify of busily working new marrow.

For some children, these couple of days surrounding engraftment can be some of the most difficult because the new cells go right to work busily repairing the usual wear and tear that the body had neglected when it had no warriors to send out. Marian had a pretty good fever going late last night (now passed), and we're hoping this is the explanation for that. I think she's feeling pretty well, though obviously doing hard body work. She was energetic this morning, but somewhat cross today and crashed to sleep around 1:30.

Red blood cell and platelet transfusions yesterday, because her counts finally dropped below THE LINE. She did start to have tiny pinpoint bruises caused by the usual capillary breakage not being stopped by the usual platelets. They're called petechiae. I have found it very interesting, though of course it makes perfect sense, to see how ruddy she is today after being so pale yesterday. Look at them RBCs.

Her mouth is redder today, finally inflamed because there are WBC to do the inflaming. Her throat has been pretty scratchy, and of course her gut is a mess, but it looks like the dreaded mucousitis, the mouth and whole GI tract sores that are some of the most painful side effects of chemotherapy, has been avoided. No blood or visible sores, and she has not needed morphine. Our nurse on the day she received her malphalan, the mucousitis culprit, said some research has shown that sucking on ice or something else very cold during her infusion has been shown to reduce the effects. We did, and I'm very happy that, via that or good blessings, she seems to have slipped it by. I'll cheerfully accept either (likely both).

We expected hair loss to start a couple of days ago, but have seen our first loose hairs today, and her scalp was ultra-sensitive during her shampooing today, also a sign that the hair loss is beginning. I had my mom bring us the clippers last week to buzz her head when needed. Earlier, I was all for just shaving it all off at the first sign, to avoid the mess and the trauma, but the team here thinks I should wait a bit; her hair is so thick that she could lose 2/3 of it and still look like a normal 6-year old, with a sleek little bob instead of le pouf. So now I'm waiting for a bald patch. I'm much less distressed about the little hairs left on the pillow than I thought I would be; certainly seeing all of the little bald heads on this floor has normalized it. Plus, as we've written before, Marian is looking forward to it. We may not, however, feel the same way 5 or 6 months from now (usually takes 3 for a little growth to start again)--such a visible tattoo of "sick." My dad hated hated losing his hair, and it surprised me, because he wasn't really a concerned-with-appearance sort of guy. But it was the looking sick that bothered him, not the looking bald.

Day 9

New cells!

Thursday, May 1, 2008

Day 8

in lieu (temporarily?!) of a good post, here's a something post. No big drama, but lots of medication and electrolyte adjustments, a brief appearance of ketones in the urine, and our first platelet and red blood cell transfusions. And a low-grade fever that keeps flitting in and out. And lots of mail!

A cheery Marian today and a tired mama. Avoiding insomnia, I simply avoided sleep...stupid, because I'd like some now ;).

love, V