Sunday, June 22, 2008

SATURDAY, JUNE 21, 2008 03:02 PM, EDT
Saturday Ally update...

Ally has been kind of a lump today. She perked up a little on the 2 walks we have done so far, but was wiped out quickly, so they were short walks. (The 2nd one involved ice cream.)

Her mouth is torn apart with sores. It seems VERY sensitive and we really are thinking these are the source of all the problems the last few days...wish we had caught them sooner. Anyway, she got some "magic mouthwash" and that perked her up for about a minute (enough to play stinky foot and get a small smile).

Friday, June 20, 2008

FRIDAY, JUNE 20, 2008 08:40 PM, EDT
Ally's Mommy writes...

Well, Ally loves this hospital so much that we are back! Her fever reached upwards of 100.6 today, so Daddy left work early and headed up to the hospital with her and Grampa. They put her on antibiotics right away and gave her some fluids. They are concerned about her weight (16 pounds 3 ounces this afternoon...right about where she was when this started in February...interesting side note...the 50th percentile for a 16 month old is 24 pounds). help her keep weight on they have started her on TPN again. Which is nutrition in a bag that goes right to her central line. Good that it will help her keep weight on, bad that we can't keep her eating enough to do it ourselves. We noticed she has a number of mouth sores...that might explain a lot of her behavior the past few days. looks like were are here for "a while" according to the doc. On the plus side we have an excellent view of the helicopters, parking lot and mountains. Plus, Ally is not getting chemo, so long walks in the wagon are on the agenda. Also, no more school for me, so we don't have to worry about missing work for this visit...a little stress off the situation. Plus we will each get a night at David's House, so SLEEP!!!!!!!!!!!!!!!! (can you tell I am excited for that part?)

Yup....Ally will make things interesting in any way she can...what a goober!

PS: She still has enough energy to play the stinky foot game!

Midsummer's Eve ~~June 20, 2008 at 7:59 PM EDT

East of the sun (West of the moon)

I wish that we could live up in the sky
Where we could find a place away up high
Live among the stars, the sun, the moon
Just you and I.

East of the sun and west of the moon
We'll build a dream house of love dear
Near to the sun in the day
Near to the moon at night

We'll live in a lovely way dear
Living our love and pale moonlight
Just you and I, forever and a day
Love will not die, we'll keep it that way

Up among the stars we'll find
A harmony of life to a lovely tune
East of the sun and west of the moon, dear
East of the sun and west of the moon.

~~ Frank Sinatra

Martin Johnson Heade, Cattleya Orchid and Three Brazilian Hummingbirds, 1871, National Gallery of Art

East of the Sun and West of the Moon

Dolls by Pixiwillow


The White Bear approaches a poor peasant and asks if he will give him his youngest daughter; in return, he will make the man rich. The girl is reluctant, so the peasant asks the bear to return, and persuades her in the meantime. The White Bear takes her off to a rich and enchanted castle. At night, he takes off his bear form in order to come to her bed as a man, although the lack of light means that she never sees him.

When she grows homesick, the bear agrees that she might go home as long as she agrees that she will never speak with her mother alone, but only when other people are about. At home, they welcome her, and her mother makes persistent attempts to speak with her alone, finally succeeding and persuading her to tell the whole tale. Hearing it, her mother insists that the White Bear must really be a troll, gives her some candles, and tells her to light them at night, to see what is sharing her bed.

She obeys, and finds he is a highly attractive prince, but she spills three drops of the melted tallow on him, waking him. He tells her that if she held out a year, he would have been free, but now he must go to his wicked stepmother, who enchanted him into this shape and lives in a castle east of the sun and west of the moon, and marry her hideous daughter.

In the morning, she finds that the palace has vanished. She sets out in search of him. Coming to a great mountain, she finds an old woman playing with a golden apple. She asks if she knows the way to the castle east of the sun and west of the moon. The old woman can not, but lends her a horse to reach a neighbor who might know, and gives her the apple. The neighbor is sitting outside another mountain, with a golden carding-comb. She, also, does not know the way to the castle east of the sun and west of the moon, but lends her a horse to reach a neighbor who might know, and gives her the carding-comb. The third neighbor has a golden spinning wheel. She, also, does not know the way to the castle east of the sun and west of the moon, but lends her a horse to reach — not a neighbor but the East Wind. She also gives her the spinning wheel.

The East Wind has never been to the castle east of the sun and west of the moon, but his brother the West Wind might have, being stronger. He takes her to the West Wind. The West Wind does the same, bringing her to the South Wind; the South Wind does the same, bringing her to the North Wind.

The North Wind reports that he once blew an aspen leaf there, and was exhausted after, but he will take her if she really wants to go. She does, and so he does.

The next morning, she takes out the golden apple. The daughter who was to marry the prince sees it and wants to buy it. The girl agrees, if she can spend the night with the prince. The daughter agrees but gives the prince a sleeping drink, so that the girl can not wake him, and does the same the next night, when it was the price of the carding comb.

But trying to wake the prince, she had wept and called on him, and some captive Christian-folk in the castle told the prince of it, and the third night, in return for the golden spinning wheel, the princess brings the drink, but the prince does not drink it, and so is awake. He tells her that she can save him: he will declare that he will not marry anyone who can not wash the tallow drops from his shirt, but trolls, such as his stepmother and her daughter, can not do it, only one born of Christian-folk, and so he will call her in, and she will be able to do it, so she will marry him.

The plan works, and the trolls, in a rage, burst. So the prince and his bride freed the Christian-folk captive there, and took the gold and silver, and left the castle east of the sun and west of the moon.

The Land of Make Believe by Jaro Hess

THURSDAY, JUNE 19, 2008 08:10 PM, EDT
The night before Ally's Mom's last day of teaching school for this year..

Oh how quickly things turn....Ally has had a rough couple of days. She is having some trouble making a stinky diaper (her foot is still stinky, even though we got to give her a bath for the first time since her surgery on the 3rd). So, that is causing her to be irritable. Also, she is having trouble communicating exactly what she wants to eat and play with, and this causes her to scream at the top of her lungs until she chokes, coughs and hyperventilates. On top of that her temp has risen a little. Just to 99 degrees, but the magic number is 100.5 to be admitted to the hospital...thank goodness my last day of work is tomorrow!

Please pray that we can all get some sleep has been rough the past 2 nights!

Ally's candle page:

Thursday, June 19, 2008

The Order of Things
...................................for RSW

Sequence of bloom
space between tides
parade of moon

The seasons march
beginning with spring
birth aging death
birdsong moth dragonfly wing

And you
And love

19 June 2008

Tuesday, June 17, 2008

TUESDAY, JUNE 17, 2008 06:31 PM, EDT
Happy Ally News...

We have had some good days! Ally has been in a good mood and she is eating well. She is enjoying yogurt with whipped heavy cream again. We are trying to fatten her up before our big trip to Boston.

We are looking forward to a couple of weeks home with her without any appointments (hopefully she will not need blood anytime soon).

The visiting nurse visits at our house every Thursday and Monday, so we will know how her blood counts are doing and when we can stop giving her "the shot".

Mommy is looking forward to her last day of work (this Friday) so she can spend lots of time with Ally (of course she will miss her students!)

Monday, June 16, 2008

Close in, move out to where you want to go.
There's a crowd out there handclapping slow.
We're all powered up, switched on, the rig is tight.
Step into joy. Walk into light.
Never mind what some people say.
They're going to love you anyway.

Shake off that nervous twitch and feel your strength.
Stand astride the width and walk the length.
Those super-troopers fired and burning bright.
Step into joy. Walk into light.
Stand tall and be yourself.
You can do it for your health.

Maybe a circus ring, a disco floor.
Do like we do. And do some more.
A crowded office or a party night.
Step into joy. Walk into light.

~~ Ian Anderson

Sunday, June 15, 2008

Saturday, June 14, 2008

Mama ain't happy, ain't nobody happy. . . .

hattip to listener

SATURDAY, JUNE 14, 2008 11:19 AM, EDT
Ally's parents say:

It looks like we will be out of here sometime between 3 and 6 today...just gotta love hospital time!

Ally is currently taking a nap...not in her crib, because that would be too easy. She has decided the BEST place to sleep is the pull out chair meant for the parents to sleep on. It must be comfortable to her (it is so NOT comfy for an adult) because she is snoring away!

She has been in a really good mood today, very playful, and loving the game "stinky foot."

Friday, June 13, 2008

Thursday, June 12, 2008

THURSDAY, JUNE 12, 2008 06:59 PM, EDT

Ally has had a good day. She has actually had 3 yogurts to eat! She is on a pretty steady flow of IV fluids (plus the chemo), so she is not so interested in drinking (this always happens in the hospital).

I forgot to write that she was just shy of 17 lbs on Wednesday, when chemo started. We actually thought she would be a LOT lower than that, based on how much she ate and what she looked like after surgery.

Some other news (it all goes in my head, but doesn't always filter out, and sometimes we just need time to process):
The pathology reports show dead and living cells in the parts of the tumor they removed. We were hoping for all dead, but we were not expecting that. An x-ray showed her kidney looked good a couple days after surgery, it looked like blood was flowing to it nicely. As it turns out, it looks like the tumor was growing off her spine, not her adrenal gland, this does not mean something worse, it is just different.

This part kind of stinks: They have been indicating the stuff we have gone through already is the "easy part" of this.


dog soldier leader

did you ride backwards?
leashed, tethered to honor

Yellow Hair crouching
dead horses branded like him
to die bones in a circle

that circle

By Phil Specht


Wednesday, June 11, 2008

WEDNESDAY, JUNE 11, 2008 06:44 PM, EDT

Ally has begun chemo. This round goes for 72 hours straight. She faired pretty well the last time she had a round like this, so we are going to stay on top of the anti-puke meds and hope for the best.

Ally has been super duper playful today. She has been in a great mood, and making lots of friends! She is talking up a storm too!

Chemo did start later in the day, so we will probably be here until 5 or 6 Saturday night, but we should be able to bring her home then.

Tuesday, June 10, 2008

TUESDAY, JUNE 10, 2008 06:12 PM, EDT
Ally's Mom says...

Ally will be headed North again tomorrow morning. LAST round of chemo at Dartmouth!

Ally has perked up even more today, just in time to run her down with more chemo.

It looks like she should be home on Saturday.

Monday, June 09, 2008

MONDAY, JUNE 09, 2008 05:38 PM, EDT

Ally has perked up quite a bit this afternoon. She is actually crawling and laughing and sitting up on her own, without wincing in pain.

Again, she loves the chocolate pediasure.

The hospital called. Her next round of chemo begins THIS Wednesday. She has exams (ear, eye and heart) scheduled for July 1. And scans (where she will be knocked out) on July 2. Then she will be randomized for 1 or 2 stem cell replacements and we will get a schedule for Boston. Lots to process.

Sunday, June 08, 2008

Offering poems and prayers and promises

SUNDAY, JUNE 08, 2008 03:53 PM, EDT

They sent us home!

Recovering at home!

This coming Wednesday or Friday: 6th Chemo

Week of July 1: More Scans and tests

Julyish: Radiation/Chemo 7/Stem Cell Transplant in Boston.

After Transplant: Possible Antibody Therapy

SUNDAY, JUNE 08, 2008 11:10 AM, EDT

Ally had a good night.

Goal Today: keep food down! (and smile lots and lots)

When I think of us
tomorrow and tomorrow
all the tomorrows

Your hand in mine
mine in yours
and feel your hand

Just there
right where the hip flares
guiding, caressing, loving

Then does my heart
skip one beat
and then another

Like a girl child
running free
all the long summer

Or boy child
gathering fireflies
for a lantern

Just for the sheer joy of it


Saturday, June 07, 2008

SATURDAY, JUNE 07, 2008 09:20 PM, EDT

Ally's day was fair. She puked a couple of times, mostly from food. She finally pooped! That put her in a better mood. She is currently sleeping, and we are hoping she will sleep through the night, with no complications.

off we go. . . .

SATURDAY, JUNE 07, 2008 09:44 AM, EDT
Ally's Mom is back at the hospital and writes:

Ally had a pretty good night. She did throw up last night around 9ish, but she seemed to feel much better after. She was able to sleep through the night, only waking when her vitals needed to be taken and her diaper needed to be changed.

Today's goal: eat, drink, play!

Friday, June 06, 2008