Sunday, February 28, 2010

Saturday, February 27, 2010

Was found a whole entire dinosaur
with a footprint of a sandal in
its stomach. And a sober tooth tyger

with a song in his ear
The unicorns dead drunk on
pomegranate wine missed the boat

Did yaweh, wishing to sacrifice a son,
need to create a race of imperfect beings
whose future deeds would need atonement?

All, all things I need must know
before I can take a bowl of stew
to an elderly neighbor

which must be settled before
I comfort a weeping child

except the bread rises in its bowl
and needs attending to
Man, am I rapture-ready!


Friday, February 26, 2010

Friday, February 26, 2010 3:53 PM, EST

We made it home!!!

It was a treacherous ride to Penn Station this morning. Our train departed 30 minutes late and because of broken trains and debris on the tracks we arrived in Boston over an hour late. Grampa Schulte and Auntie Lynn were there to great us!

We just missed all the crazy Friday night leaving Boston traffic, yeah!

I have lots of stories that will come out over the next few days...

Rescuing some old pomes/fragments from elsewhere

Rat Race

Same as mouse race
only bigger
is how
the Chinese see it.

Along with
ugly butterflies:
the ones
we know as


hungry wolf

MFK Fisher had it right:
the only thing to do
is cook it


imaginary grace

What we ask
when our eyes are closed
when warm in the circle
of another's arms

Or joy. That, too,
is sometimes granted
for a while


erotic cabaret

velvet glove, pulled slowly down,
fishnet stocking tight over a rump
a floweret placed. . . .

ah, no
not what we had in mind. . . .

the space between fingers
the wrist drawn down a belly
a finger searching for
the heart of the orchid


playing with matches

hard nail across a match head
years of experience
to perfect the trick
and many burned thumbs


time crinkling

just a life
a memory
a mother's smile
as she touches
gingerly, almost
a lock of fine blond hair
tied with a bit of faded
blue ribbon
in the memory box


wastelands tapestry

the golds blown
the browns faded
a bit of glint on the sage
pale skeleton of tumbleweed
whisks by

childhood memories
of a desert-born woman


Thursday, February 25, 2010

Thursday, February 25, 2010 1:09 PM, EST

Ally's MIBG scan shows NO EVIDENCE OF DISEASE!!! This is super awesome. We do not have the results of the other tests, but the doctor was mostly looking at this test as an indicator.

Right now we are hanging out waiting for our 4 hour urine to be done. Just waiting....
Our next plan is to pray the snow doesn't hinder our ride home tomorrow.

Ally's MIBG scan shows NO EVIDENCE OF DISEASE!!! This is super awesome. We do not have the results of the other tests, but the doctor was mostly looking at this test as an indicator.

Right now we are hanging out waiting for our 4 hour urine to be done. Just waiting....
Our next plan is to pray the snow doesn't hinder our ride home tomorrow.

funny pictures of cats with captions
see more Lolcats and funny pictures


Wednesday, February 24, 2010

Little Round Bay by deckerbob

Tuesday, February 23, 2010

Tuesday, February 23, 2010 4:26 PM, EST

Oh how I wish this treatment were available ANYWHERE else. There has been a lot of drama down here. [The doctor informed that the schedule has changed. Instead of being in NYC for week of scans and a week of therapy, Ally is to return for the therapy the week after next!]

The bottom line is Auntie Kelly, Ally and I will be headed back to New Hampshire on Friday morning. Ally and a parent (yet to be finalized which one of us gets to make the glorious trip back to NYC) will be headed back here on March 7th for the week.

Yesterday was a very upsetting day, but today has gone better. Of course Ally is doing great, as she doesn't really understand what is going on. We have an MIBG scan tomorrow and bone marrow and CT on Thursday.

It is rainy and cold here, and now Auntie Kelly and I have 3 days left to eat 2 weeks worth of groceries!

Monday, February 22, 2010


Sunday, February 21, 2010

Sunday, February 21, 2010 6:31 PM, EST

We are in New York City! The train ride seemed quick and we got a taxi to the Ronald McDonald House right away. We are mostly settled in and Ally is playing with Auntie Kelly in the playroom right now.

Our doctor called with MRI and echocardiogram results. Both looked great!

We have a 12:45ish appointment for tomorrow. Literally they told us 12:45ISH. Hopefully they will call back to give us a firmer time tomorrow morning.

We are missing Daddy, but are very thankful Auntie Kelly is here with us now. Yeah for February Vacation week!


Saturday, February 20, 2010

Ally catchup. . . .

Ally on Friday
Friday, February 19, 2010 6:52 PM, EST

Thanks for all of your positive thoughts today. We will not have news about Ally's Brain MRI or the echocardiogram until next week.

We are off to NYC for 2 weeks. We leave on Sunday. The first week is more scans. The second week will be 3f8 (antibody therapy) treatment.


Tuesday, February 16, 2010 4:15 PM, EST

We got Ally's blood counts back for today. Her red and white cells are great! This means no transfusion and NO MORE SHOTS!!! (The poor girl has been getting a shot in the leg for 16 days.)

Bonus snow day! I got to stay home with Ally today (and get some shopping in this morning...although it was for school purposes).

Here is the rest of the week...dreading Friday:
Wednesday: Daddy home with Ally (because he is working this weekend)
Thursday: Auntie Lynn comes for the day
Friday (February 19th...our least favorite day in the world) MRI scan, Echo-cardiogram and meeting with the nutritionist.
2/19/08 - We learn Ally's cancer is high-risk
2/19/09 - We learn the cancer is back.
Saturday - packing
Sunday - Off to NYC with Auntie Kelly.

Lately Ally has been randomly bringing up things that happened months ago; for example, she started talking about how much she misses Scott the Builder who made her Make-a-Wish Playhouse!

Here’s a photo of Ally walking home from the store!

Happy Valentine’s Day!
Today we took Ally to the dinosaur exhibit.
She was terrified!!!
She actually had a pretty good time, although the life size moving dinos did scare her a bit. She really liked all the little games they had after looking at the dinosaurs.

“Big teeth!”: Ally at the Dinosaur Museum

Tuesday, February 16, 2010

Sunday, February 14, 2010

Year of the Tiger

Happy New Year!!

Saturday, February 13, 2010

Thursday, February 11, 2010

Thursday, February 11, 2010 3:01 PM, EST


Ally's counts have dropped again. Up to DHMC for red blood cells tomorrow.
Hopefully one more injection will get her white cells up enough so we can stop jabbing her in the leg with a needle every night.

Tuesday, February 09, 2010

Tuesday, February 9, 2010 5:06 PM, EST

Check below for more news about Ally walking!

A little background: Ally has been hooked up to a machine almost 24/7 since we have been home from NYC. Mostly her feeding tube. We are finally at the point where we can ease back on her feedings. Grammy and Grampa turned it off around 11:30 this morning.

I got a call from Grammy around lunch time today.
GREAT NEWS!!! Ally chose to do some walking on her own! She walked from the kitchen to the living room and then chose to sit on the floor and do some playing! She is very stiff, but not complaining of too much pain.
Yeah Ally!!!

Update when I got home to talk to Grammy and Grampa: Ally walked all over the place! They have pictures of her "vacuuming" all 3 rooms downstairs. They also have pictures of her doing other activities. She is tuckered out right now, but is in good spirits, and we hope to witness some of this walking tonight.

Sunday, February 07, 2010

Sunday, February 7, 2010 4:42 PM, EST

Today has been a better day. Ally's temperature is holding steady in the lower 99s. Hopefully it will stay there as she gets her weekly antibiotic and continues to get her GCSF injections (which help her body make white blood cells). The THREE HOUR NAP today seems to be working well for Ally as well. We are hoping her temp will go back to normal soon, without a trip to the hospital.

Ally will have a blood draw tomorrow. Also hoping that her counts have not bottomed out again, and that she will not have to be transfused again on Monday or Tuesday.

Ally's spirits are pretty good. She can get quite emotional. Such as yesterday, when I was reading her this lovely book about a dog getting lost in the snow, and then his family finding him. We have read the book several times in the past, but yesterday she was hysterical when the puppy got lost. I had to stop reading, calm her down and then quickly read to the part where the puppy finds his family. Then, 3 minutes later she was laughing about something else. Generally though, she is in a good mood. She still doesn't want to walk on her own.

Those steps she took on her own the other day seem to be a fluke. There is some talk about a physical therapist, but there is also talk that her body just may not be ready to begin walking again. We feel if we can just get her to stand and do a little walking each day, hopefully it will increase bit by bit and eventually she will do it willingly.

Ally's tummy is still a bit sensitive. Last night she puked, but we think it was because we stopped her pump, flushed her tubie through, and then gave her medicine...too much in her tummy at one time. At least it was right before we were going to bring her upstairs for bed, so we just made a quick detour for a bath and Ally was good.

Here is to an uneventful week!

Fun Little Tid Bit: A one block ambulance ride in NYC (literally across the street) costs roughly $4,000. (Ally did this twice.) Thank goodness for insurance!

After the storm


Saturday, February 06, 2010

Saturday, February 6, 2010 5:26 PM, EST

This is a "I'm feeling sorry for myself, even though Ally is the one who should be feeling bad, so that just makes me feel guiltier" kind of post. Feel free to skip this one.

Things went well at the hospital on Friday. Ally ended up getting platelets and red cells, so Grammy, Grampa and Ally pulled in around 5:30PM, from a 9:00AM appointment.
When Grampa handed Ally over I thought she felt a little warm. A bit later we took her temp and it was 99.1 (she gets admitted to the hospital for a 100.5 temp). Right before bed she spiked up to 100 even. This morning it was back down in the low 99s/high 98s. Then, all of a sudden she jumped a whole degree from a perfect 98.6 to 99.6 in an, being a good mom I canceled my plans to have fun with my friends, in fear of getting called out of a movie to drive Ally to the comes the I am feeling sorry for myself part....her temp has dropped back to the low 99s. I could have gone. Instead I am stuck watching/listening to the stupid knock off version of "Cinderella", Ally has somehow become very attached to.
Anyway...we saw this pattern in her last round of chemo. We are expecting her to get to 100.5 sometime tomorrow or Monday.

The watcher on the desk. . . .


Thursday, February 04, 2010

Thursday, February 4, 2010 12:12 PM, EST

We just got a call about Ally's blood counts. Her platelets are VERY low (her # = 14, an average person has 150). Daddy, who is home with Ally today, knew this to be true, because Ally bled through a couple band-aides after her nurse left this morning.
So.....Ally will go to the hospital tomorrow for some platelets.
Also of note, her ANC has dropped to zero. This means she has no white blood cells to fight off infection. The first time she had this chemo her white cells did not drop this low; it just shows her body is not as strong as it used to be when dealing with chemo. :(

P.S. We went two days without puke, and then, this morning, at 2:30AM, we heard Ally yell, "Mommy, Ally puke!". Grrrrrrr.

Note: Ally took some steps on her own today...willingly!

“The core Republican idea is destroying the American way of life.”

What Small Government Looks Like

Via Paul Krugman, small government and Colorado Springs. The city’s voters rejected a tax referendum needed to cover a budget gap caused by the recession. So, essentially, the city is shutting down services.

More than a third of the streetlights in Colorado Springs will go dark Monday. The police helicopters are for sale on the Internet. The city is dumping firefighting jobs, a vice team, burglary investigators, beat cops — dozens of police and fire positions will go unfilled.

The parks department removed trash cans last week, replacing them with signs urging users to pack out their own litter.

Neighbors are encouraged to bring their own lawn mowers to local green spaces, because parks workers will mow them only once every two weeks. If that.

Water cutbacks mean most parks will be dead, brown turf by July; the flower and fertilizer budget is zero.

City recreation centers, indoor and outdoor pools, and a handful of museums will close for good March 31 unless they find private funding to stay open. Buses no longer run on evenings and weekends. The city won’t pay for any street paving, relying instead on a regional authority that can meet only about 10 percent of the need.

The article also says residents distrust the city government and don’t believe their tax dollars are being spent wisely. But this level of cuts in services is not caused by overpaying a few people or leaving the lights in the library turned on too long.

Thomas Levenson (via Monica Potts) writes,

This is, among other things, what folks like Megan McArdle never seem to get — not merely that governments do things that (a) private entities won’t and or can’t and (b) that are necessary if you are, say, going to have thousands or millions of folks living in close proximity to each other, and (c) those things that need to be paid for — by the people in common, that is to say, by government — include a bunch of stuff essential for a sound economy and any chance of achieving what is commonly thought of as the American way of life.

These cuts probably will hurt business, including tourism. The right-wing model that sees the public and private sector perpetually at odds with each other is a denial of the basic fact that those miraculous free markets wouldn’t exist without governments that provide stuff like roads, bridges, street lights, law enforcement, a stable banking system, garbage pickup, etc., and these are things that have to be paid for somehow. And unless we want to go to a system in which all roads are toll roads, houses burn until the firefighters are paid (it’s been done), and street lights are all coin operated, this means government does these things through tax money.

Levenson is right — “The core Republican idea is destroying the American way of life.”

Wednesday, February 03, 2010

Tuesday, February 2, 2010 6:20 PM, EST

The blood transfusion went well today. It was a long day at the hospital, but everyone made sure Ally had enough medical supplies left in her birthday stash...she came home with lots more to replenish her supplies.

Her red blood cells should be up now, with the transfusion, but this transfusion did not include platelets. Based on how much her platelet count dropped from yesterday to today it looks like she will need to go up on Thursday or Friday for platelets.

Ally has been is a super good mood. Talking wise she is back to her old self. She still refuses to walk on her own, but is now willing to sit by herself for a bit, and will scoot herself off the couch for a diaper change (yes...she is still not potty trained, and it looks like it's not happening anytime soon). Oh well, we pick our battles. We are trying to encourage her to move around a little each day. Tonight's big challenge will be going half way up the stairs. We tried last night and it just ended with Ally tucking her legs into her body and refusing to move. Wish us luck on try #2.

Tuesday, February 02, 2010

My own personal Whistlepig. . . .

My theory is, Whistlepigs are local. That Pennsylvania fellow does NOT get to predict everyone's weather. . . . As for me, and my groundhogs, it's snowing. NO SHADOWS!! Winter is over. That's all. No more. Done.

Happy Whistlepig Day!!

Monday, February 01, 2010

Monday, February 1, 2010 2:35 PM, EST

We got the results of Ally's blood draw today. Her counts dropped quickly and dramatically. She will need to go in for a transfusion tomorrow.