Thursday, March 25, 2010

Thursday, March 25, 2010 5:11 PM, EDT

It has been a nice week. Ally's button has hurt less and less each day. She did not need any Tylenol today, but she keeps pulling her shirt away from her belly, indicating it is at least still irritating her a little bit.
Today Ally had some excitement, as we had our fence replaced. Part of it had fallen onto Ally's playhouse and another part was practically laying in our neighbor's yard. The new fence looks very nice.
Yesterday Ally and I made a count down to New York; she is very excited about going again. We even had to write down which days she will be getting shots. She is a planner.
Enjoy the snow on Friday!!!

Up coming dates:
April 1: HAMA blood draw
April 7: Begin injections again (10 days)
April 12: Round 2 of 3f8 treatment in NYC
April 19: Begin 2 weeks on/2 weeks off of Accutane

To read more about HAMA:

Wednesday, March 24, 2010

Tuesday, March 23, 2010

Monday, March 22, 2010

Monday, March 22, 2010 8:34 PM, EDT

To begin, the picture right here is from last August and it will be clear why I included it as you read on.

We had a great weekend. Ally was very snuggly all weekend long. It was great to just hold her. She had lots of stories to tell about NYC. She also included the fact that Oscar (her pig) is a girl. Who knew?

Late Sunday and today Ally started to complain that her button hurt. This is the Mic-Key button that is basically a hole with a plastic contraption that sticks out a little bit in her abdomen right into her stomach (see picture, taken last August...look at all that hair!). It allows us to hook her up to a feeding pump throughout the night and give her meds that taste yucky, without her actually having to put them in her mouth. Very useful. Anyway, it seems something from the treatment (probably the 10 days of shots and their effect on her immune system) is wreaking havoc with her Mic-Key button. Tylenol and neosporin are not helping. We are hoping the pain subsides over the next few days. Poor little monkey has been through enough.

Our next step is to get Ally's blood draw on April 1 to test for HAMA (Human-anti-mouse-antibodies). This will tell us if we can move forward with the second round of 3f8 treatment. If Ally HAMA's that means we will have to stop, wait for her HAMA to go down and then proceed with 3f8. We have no idea how long we would have to wait. She is only eligible to do 3f8 for 2 years from her start date, no matter what. So, when April 1 comes along we need to think positive thoughts for a negative test. And to make it all the more dramatic, we won't get test results until the following week! Yeah for more stress!

That's about it for now, I will be sure to update about the current pain situation when it changes!

Saturday, March 20, 2010

Saturday, March 20, 2010 3:30 PM, EDT

Ally and Daddy are home!

Saturday, March 20, 1:32 p.m. EDST - Vernal Equinox

Resurrection Lilies

Friday, March 19, 2010

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!!!

Wednesday, March 17, 2010

How to say "My hovercraft is full of eels" in Gaelic:

Tá m'árthach foluaineach lán d'eascainn

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.

Wild Thang . . . .

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.

March 15 2010, Pisces New Moon 4:01 pm EST

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....

On Sunday, March 14, 2010 at 2 a.m., Daylight Saving Time begins in the United States.

Saturday, March 13, 2010

Responding to a poem in the New Yorker for Pat

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


Friday, March 12, 2010


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


Phil Specht
Mar 12, 2010

If this ain't poetry, I don't know what *is*. . . .

Rice to Riches NYC


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

Tuesday, March 9, 2010 12:34 PM, EST

Daddy has the magic touch! The FDA is all set, Ally's shots will be arriving at our home by 11 tomorrow morning and Daddy and Ally will be in NYC next week!

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

20September 2008

Sunday, March 07, 2010


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

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?

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.


Sorry. I can't stop laughing. . . .

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!