Friday, March 19, 2010 8:31 PM, EDT 
Treatment is over! The pain patch kicked in fully today. Ally only had about 20 minutes of pain, then 20 minutes of fitful sleep, then she settled down for some good sleep. She even "snapped out of it" earlier today.
The weather has been so nice that yesterday and today Daddy and Ally went to a nearby park. Yesterday it was not so busy, but today it was packed. Ally was a little hesitant to play today, but at one point a little girl came over and the 2 of them played together nicely. On the way home today Daddy was going to grab some dinner at a diner, but just up the street was a pizza place and Ally insisted they go there instead. She ate about 1/2 the cheese off a slice of pizza (that is actually REALLY good eating for her).
Her next round of 3f8 is scheduled for the week of April 12.
Tomorrow I get to hold, hug and kiss Ally (and Daddy). I miss them both so much! They pull into South Station around 1:00.....I hope I can make it, it has been a long week without them. Luckily 2 of my students have been all about the hugs this week! If they only knew how good their hugs made me feel!
Happy first day of Spring!!!
Friday, March 19, 2010
Wednesday, March 17, 2010
Wednesday, March 17, 2010 10:53 AM, EDT
I just talked to Daddy. Ally has been in pain for about 45 minutes. He feels she is on the tail end of it. The whole process begins with pain meds and hive meds. Then the antibodies go it. About 10 minutes into the infusion (that lasts 30 minutes) the pain usually hits Ally. They then administer "rescues" of pain meds. Typically 1 rescue will knock a kid out (put them into a fitful sleep). Ally got 5 already today and she is still fully awake. They think she may have built up a tolerance for the pain meds, because she was so heavily medicated with morphine during her stem cell transplants. They are trying a patch that will dispense pain meds continuously over the next three days. Hopefully that will at least take the edge off. The first round is all about figuring out what is going to work best for Ally. Hopefully they will find the perfect combination by Friday, so that round 2 won't be as painful.
In case you didn't get the extra note last night here is what happened:
I was skyping with Daddy around 7:30. He said Ally flipped the switch around 5:00 and was back to her old self. They went out for pizza. When they got back to the RMH Ally asked if they were going to go to the hospital at all. She had not remembered ANY of the hospital trip. We are very thankful she does not remember the pain, but at the same time it is a bit disturbing that parts of her memory are completely gone.
Tuesday, March 16, 2010
Ally’s Mommy added:
I skyped with Daddy at 7:30 tonight, he said Ally was back to her normal self around 5. She asked if they were going to the hospital today...she didn't remember going there. Weird.
Here is a picture I captured from Skype around 4:00 on Tuesday. Ally just wanted to snuggle with Daddy all afternoon.
Tuesday, March 16, 2010 12:12 PM, EDT
Ally's treatment happened much earlier today. When I called Daddy around 11:15 Ally was resting. He said the pain lasted for about an hour today. Yuck. She kept saying, "Pain, get out of here, SCRAM!" Even when in a stinky situation Ally is the best! Yesterday after the pain subsided Ally fell into a grunty kind of sleep. Daddy said today her sleep was much more peaceful. She did get some itchy hives today, and the nurses said they will probably progress and get more and more each day. They do give her meds for the hives. Daddy said that even though the pain lasted much longer today, he felt more and better prepared to console her throughout.
Last night they did make it to the Sock Hop. Ally was a bit grumpy to start, but eventually just chilled and watched all the fun. She got to leave with a bag of candy.
Here is the most interesting part of our story:
This morning Daddy told Ally that they would need to go back to the hospital again. She said, "Ok." He then told her they would be doing the same treatment as yesterday. She said, "Ok." He said there would pain again. She said, "Pain?" She didn't remember the pain at all! The doctors said that would happen, but we just didn't believe them. Let's hope her amnesia keeps up.
3 more days of treatment. The plan is more pain meds tomorrow, which is good for the pain, but will cause her more hives.
Monday, March 15, 2010
Monday, March 15, 2010 3:18 PM, EDT
Today went slowly for Daddy and Ally. The infusion did not begin until 1:00. About 10 minutes into the infusion the pain began. The pain was concentrated in Ally's butt. (Weird) Her heart rate raced up to 180. After 20 minutes or so the pain subsided and Ally was able to drift off into a fitful sleep. Her heart rate is on the way down (160 @ 3:00) and she is groggy. (No hives (yet) and no big breathing issues.) The nurses and doctors were VERY IMPRESSED with how Ally handled the pain. They feel they will be able to safely up her pain meds tomorrow. (They have to be careful about the pain meds because they could relax her too much and she would stop breathing.) Their estimated time of departure from the hospital is 4-4:30.
Before the infusion (because they were told to be there for 8:00 this morning) Ally had lots of fun in the play room. They kids were doing an activity where they picked a musical instrument and they moved and danced all over the room (about the size of a small elementary gym). Ally picked the vacuum. Yup, the vacuum cleaner is now a musical instrument.
Tonight there is a sock hop at the RMH. The nurses said Ally would most likely be wiped out for the rest of the day, but hopefully she will be willing to head down to the sock hop for some food and at least watching the other kids dance.
Daddy feels it was a good day.
Mommy wishes she were there to give them both a big hug.
Sunday, March 14, 2010
Sunday, March 14, 2010 4:28 PM, EDT
Daddy and Ally are safely in NYC. Ally had a good time on the train, and was promptly welcomed with a brand new build-a-bear when she arrived at the RMH. She was also offered a doll with several accessories; but due to limited suitcase room, they decided to save it for another kid. Daddy said the trip was easy with Ally, except that she has now gained some weight, so carrying her through Penn Station was a challenge.
Tomorrow will be Ally's first day of 3f8. If you are looking for something specific to pray about here is what we know:
1. There will be pain. From what we have heard from other families it is intensive and can last from minutes up to an hour or so. There is usually lingering pain throughout the rest of the day.
2. Breathing Problems. Many of the children need some oxygen help and need to be told to breathe and keep their breathing under control.
3. Hives. Some kids break out in hives, not all. Let's hope Ally is spared of this side effect.
4. Blood Pressure/Heart Rate. Too high or too low, blood pressure can be a problem. Often children's heart rates spike into the high 100s (150-200) during the treatment. They will not let Ally leave with a high heart rate.
The whole process takes about 3 hours, with the actual antibody therapy infusion taking 30 minutes, so it seems like most of the time is recovery.
I am very anxious to get a report from Daddy tomorrow. I will be sure to post anything as soon as I hear, and as soon as I am able to get a short break from teaching tomorrow.
I miss them already....
Saturday, March 13, 2010
Friday, March 12, 2010
Helen
When the fawn loses her spots
What is snow?
so gentle at times
softly muffling sound
in the calm of a quiet passage
leaving nothing but a blanket over ground
the earth sleeps
or the harshness of blizzard driven whiteout wolf
in vain looking for the hidden fawn
she is not yet born
wolves hungry in the depth of winter
howls disappearing before the fawn loses her spots
the promise of a crocus
the spotted fawn
the arriving geese know her well
and then lose her and she her spots
and the eagle sits
while mate spies the foolish redhorse
venturing out on field as rivers loose their bounds
bringing back the circle of water and sky
before the brown earth greens
awake
Phil Specht
Mar 12, 2010
If this ain't poetry, I don't know what *is*. . . .
Rice to Riches NYC
CINNAMON SLING
COAST TO COAST CHEESECAKE
COCONUT COMA
HAZELNUT CHOCOLATE BEAR HUG
MAN-MADE MASCARPONE
OLD FASHIONED ROMANCE
STUBBORN BANANA
UNDERSTANDING VANILLA
THE MILK CHOCOLATE ONLY RINGS TWICE
TAKE ME TO TIRAMISU
SEX DRUGS AND ROCKY ROAD
THE EDGE OF RUM RAISIN
CREAM-CICLE TICKLE
CHOCOLATE CHIP FLIRT
FLUENT IN FRENCH TOAST
"CATEGORY 5" CARAMEL
THE CORNER OF COOKIES & CREAM
HONEY GRAHAM FOR MR. SMITH
PERFECTLY LEGAL PECAN PIE
Thursday, March 11, 2010
Wednesday, March 10, 2010
Wednesday, March 10, 2010 8:52 PM, EST
We gave Ally her first shot tonight. Of course she did awesome. "Ally do little cry?" (That is what she said before we gave it to her. That is all she did, a little cry.) She gets one every day until Sunday. On Monday we have to wait until she gets blood drawn at the hospital before we can give her that one. (These shots are super shots. They are the kind that help her body make white blood cells. In the past we gave them to her after chemo and only until she hit an ANC of about 1,500 or so. These shots are more powerful and we have to stop giving them to her if her ANC reaches 20,000.) Her blood will be checked each day at the hospital, and she will keep taking the shots as long as her levels do not get too high.
Ally starts 3f8 officially on Monday!
Daddy is taking her to NYC for this trip. I sure am going to miss them like crazy.
This is Ally in her cozy coup (in the living room) wearing driving gloves and talking on her cell phone. I don't know where she gets this from...I am going to blame Grammy and Grampa for the driving gloves!
Tuesday, March 09, 2010
Monday, March 08, 2010
Monday, March 8, 2010 7:08 PM, EST
Good Stuff First:
We had a great weekend playing in the PlayHouse! As an extra bonus Scott the Builder and his family (Wife, 10 year old son and 3 year old daughter (8 days younger than Ally)) came for a playdate. Ally had so much fun with them. It was great to see them all again. All three kiddos played well together. Ally is still talking about it! We are looking forward to visiting with them again after our next New York trip.
Speaking of the New York Trip.....
Grrrr. We have not heard from the NYC Hospital since the call last Tuesday telling us the FDA had not yet approved the treatment. Today I e-mailed them with my concern that we had not heard from them yet, and that we had not yet received Ally’s shots, which need to begin Wednesday morning. I did not receive an e-mail back today. Also, I checked our on-line pharmacy to see the status of the shots. There is no indication that they were even ordered! Ahhhhhhhh. Daddy is going to make the phone call tomorrow, so that I won't have to apologize to anyone for yelling at them.
And ending on a positive note:
Ally has begun to use the potty again and when I pick her up she feels thicker and heavier! I can't wait to see an official hospital weight on her.
Thursday: Every night just before we leave Ally's room for the night she turns to each of us and says, "Good Night..." Tonight it was: "Good Night Little Mouse, Good Night Pickle" (Mommy was the mouse and Daddy was the Pickle). Each night she calls us something different.
Friday: Mommy - Pickle Daddy - Cupcake
Saturday: Mommy - Cupcake Daddy - Pickle Then she said good night cookie, good night milk (her bedtime snack)
Sunday: Mommy - Pickle Daddy - Cupcake (She seems to be stuck in a rut)
I wonder what tomorrow will be.
pain ~~ you fall into it like a black bird's wing
sharp and hot, wing feathers rasp against nothing
heart hot, dark and burning
it swallows you, eats you up
you cease, totally, to be one thing
you crawl out, one inch at a time, howling
screaming, demanding death
you learn its nooks, refuges
one at a time
measure the measure against
your sanity
and pray it's enough
jjl
20September 2008
Sunday, March 07, 2010
Reprise
Sunday, July 20, 2008
When butter tasted like an el
I stopped for a photo
of warmth today
thinking then I could
take off all my clothes
and you could touch me
everywhere
I dreamed of cold blue
so we dived under the
covers and in that
green, I played
in your fur
Tomorrow was peach
music, and I sang in your
ear and you sang back
in my mouth
and we laughed the
electricity completely out
I wonder what yesterday's
going to be like?
jjl
19 July 2008
Saturday, March 06, 2010
Saturday, March 6, 2010 4:35 PM, EST
We have not heard from NYC and we have not received Ally's shots in the mail. Should we start a pool to see if we are actually going to New York this month or next?
The past few days have been lots of fun. The weather has been great and Ally has been spending lots of time in her playhouse! One of her favorite activities is cleaning, so opening up the playhouse and cleaning it out has been a blast for her. She also requested that I write about the bubble gun. She has a battery operated gun that shoots bubbles. She loves it.
Hopefully I will have some New York news on Monday. Enjoy the weather.
Thursday, March 04, 2010
Wednesday, March 03, 2010
Wednesday, March 3, 2010 3:17 PM, EST
I talked to the doctor in NYC today. Our original best case scenario plan was to start injections with Ally today and go to NYC for 3f8 treatment next week. For a couple reasons this is not going to happen. The main reason is the FDA. Weird. What is going on is Ally is on a Protocol. This means she is in a group with a bunch of other kids for this treatment. All the kids currently getting the treatment are on a Protocol, but that one is full. So, they need to open a new one. This one needs to be approved by the FDA. It should have been approved by February 8, 2010. They are lagging behind. The NYC doctors think it will be approved by the end of the week. So, technically Ally was supposed to start today with injections, but since the FDA has not approved the Protocol, Ally can't start injections today. Also, Ally can't start injections today because they have not yet arrived in the mail. What this means is that most likely Ally will start injections NEXT Wednesday and go to NYC the week of the 15th. Of course, this is speculation on my part. Good news, we get to keep Ally home another week, fatten her up some more and enjoy her super spunkyness that she has had since returning from NYC.
Monday, March 01, 2010
Monday, March 1, 2010 6:26 PM, EST
While we were in New York Ally made a new friend. She met a 6 year old boy who has recently started treatment again, after being clean for 4 years. Bummer. Anyway, he was super sweet to Ally. He really liked the way she spoke and would often tickle her gently to make Ally laugh. It was super cute. On our last night in NYC there was a dinner and some music for the families. Ally and the little boy did a little dancing together. It was really cute. She still talks about him every day. I am hoping our paths will cross again. It is nice for Ally to be able to play with kids that are just like her.
One of the good things to come from NYC is an Rx for an appetite stimulant.
Ally is actually eating more! Yippie!
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!
jjl
9/27/2007
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
moths.
*
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
jjl
2/12/2007
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.
Wednesday, February 24, 2010
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.
Note: 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.png)
Tuesday, February 16, 2010
Sunday, February 14, 2010
Saturday, February 13, 2010
Thursday, February 11, 2010
Tuesday, February 09, 2010
Tuesday, February 9, 2010 5:06 PM, EST
Check below for more news about Ally walking!
3:00:
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!!!
5:00:
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!
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 hour....so, 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 hospital....here 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.
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.”
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. . . .
Monday, February 01, 2010
Sunday, January 31, 2010
Sunday, January 31, 2010 8:11 PM, EST
Ally's birthday was great! .png)
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Tomorrow Ally will get a blood draw. On Friday the doctors told us to be ready to bring her up for a blood transfusion at some point this week. Hopefully it will be later in the week or not at all. Also on Friday one of her oncologists remarked again at how wonderful she thought Ally was doing. She said that some of the other kiddos they see, that have had this surgery, start to look as good as Ally about 4 months out. I can't imagine her being like this for four months. She still will not walk on her own (she can, she just doesn't want to), she must have someone to sit with her and will only tolerate being alone (and by alone, I mean not physically touching her, she needs someone to sit on, not just in the same room) for about 2-5 minutes. She doesn't have much of an appetite and is still puking...which we found out is common for 4-6 weeks after surgery. Ugggghhhh. She is also not interested in her toys very much. She will play with some things for about 5-10 minutes, but then is content to just sit on the couch with someone, sometimes watching tv, sometimes reading books and sometimes just sitting there quietly. We miss old Ally.
On a brighter note Ally LOVES her big girl bed and she slept the whole night through in it last night!.png)
Hopefully not much to report this week.
We head back to NYC the week of school vacation.
Saturday, January 30, 2010
Friday, January 29, 2010
Friday, January 29, 2010 8:13 PM, EST
Today has been a very good day for Ally (if you don't count the 2AM puke).
At work Mommy received s couple of gifts for Ally, both of which she opened and loved! (She can't wait to watch the Dora DVD and she has been playing with the piggy all night.) Mommy also got several cards for Ally. Her teacher friends were very generous and got Ally some gift cards to Toys R Us and Build A Bear, both of which have HUGE stores in NYC! Since we are going back at the end of February and we should have a couple of days free we may wait until then to use them.
When Mommy got home there were lots of cards and 2 packages for Ally. She LOVED the cards! She was also impressed with the animal figurines that came in one of the packages and immediately made them poop! Yippie! [Note: that package was from listener and listener’s squeeze!] (The second package was the shots we have to start giving her tomorrow....yuck.)
At the hospital Ally was the star of the day. All the nurses and doctors signed a card for Ally and came in to sing her "Happy Birthday". Even though the staff may have thought Ally was scared to death, she truly enjoyed the singing. BEST OF ALL Ally got a HUGE bag of medical supplies!!!!!! This may be her most favorite present ever! She actually sat on the floor and played with the stuff for 20 minutes when she got home.
Today was a good day....now if only this scratchy throat and runny nose would go away.
Happy Birthday to Ally tomorrow!!! It's nice to celebrate something.
Matthew Rothschild highlights this Howard Zinn quote:
“To be hopeful in bad times is not just foolishly romantic. It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness. What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places—and there are so many—where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction. And if we do act, in however small a way, we don’t have to wait for some grand utopian future. The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory.”
Howard Zinn
Thursday, January 28, 2010
Thursday, January 28, 2010 6:50 PM, EST
So...you may remember I mentioned one of Ally's NYC nurses came down with shingles sometime after treating Ally. This caused us to need to put her on a yucky banana tasting medicine. This medicine also makes kidneys work hard. Ally does not have good kidneys....until today! Her kidney levels were so good that now, instead of this yucky medicine 3 times a day, she has to take it 4. Luckily she only has 2 days left.
The puke issues continue.
The poop issue has resolved!
I have been getting LOTS of e-mails and messages about Ally's birthday. Unfortunately, because of the chemo this week, we are limiting her party to just family. We are hoping to have a party in the spring for Ally's birthday.
Tomorrow is last day of chemo!
Poached Irony
Science now says memory changes our genes
are we elephants, we never forget?
there where elephants go to die
the fabled storehouse of all ivory past
is it in our tusks, that knowledge?
I seem to have forgotten
but the word ivory, and I see a Great Aunt
watching Liberace on a tiny black and white screen
inside a large wooden cabinet
"tinkle the ivory"
so many decades ago
is it the tiny black and white screen streaming video
to my phone makes me an elephant?
Show me the graveyard
for that irony
needs to die.
By Phil Specht on Mar 13, 2010
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http://www.newyorker.com/fiction/poetry/2010/03/15/100315po_poem_ras