Thursday, July 31, 2008

NEW MOON ~~ Friday, August 1, 6:14 am - EDST

Superbaby grows up. . . .

Well, Ally has had an interesting week.

Ally is up to 7 transfusions so far since getting to Boston. She has been needing blood and platelets nearly daily, but goes on smiling. She has had mouth sores (common with this treatment) and has needed morphine for the pain, but goes giggling. Ally continues to eat (as well as get the TPN nutrition by I.V.), has been gaining weight, and is over 19 lbs for the first time in her life. Yesterday she turned one and a half.

The goal is for her ANC count to reach 500 and stay at 500 for three days, at which point they can finally go home (at least for a couple of weeks). At one point this week Ally's count reached 100, which felt good.

On Tuesday Ally's Mommy wrote:
I got the "home safety" talk That's all I can say now.

We had hoped to see Ally's ANC count climbing each day, as her body figures out how to make use of her replenished stem cells. Today Ally's ANC count is back down to 20. Here's the latest note:

THURSDAY, JULY 31, 2008 09:12 AM, EDT
Not the ANC we were hoping for, BUT her white blood cells are going up, and the nurse said another factor in her blood shows that the ANC is really on it's way up, so hopefully from here out we will only see numbers going up.

Incase you missed any daily notes this week, here they are below. Dinny, owner of Hopkins Bookshop, is on vacation this week, so I have been working extra hours and needing to do some self care in the evenings, so haven't done as much emailing as usual. XOXOXXX June

TUESDAY, JULY 29, 2008 09:07 AM, EDT
Ally had a pretty good night. She needed more platelets and red blood cells last night, but she is perky and playful this morning.

TUESDAY, JULY 29, 2008 08:51 PM, EDT
A green font in honor the mysterious green thing Ally ate today and I had to dig out of her teeth!

Today was a great day for messages! 9 guestbook signs (a record as of late) and she got ALL the mail for 6 West today! 6 cards!

Her day was good, she FINALLY got to take mostly uninterrupted naps...first time...since coming to Boston pretty much. She is still in a good mood. She still has mouth sores, but the morphine is doing it's job, because she still had little bites of bagel.

I was encouraged by her counts today, but the numbers are still so low, it could just be a funny jump...I guess we will see how the rest of the week turns out.

I am suspecting she is going to need platelets again tonight, as she bled for a good 10 minutes after her shot today.

I got the "home safety" talk That's all I can say now.

WEDNESDAY, JULY 30, 2008 02:19 PM, EDT
A blue font for all of Ally's bruises today. Having a platelet count of 4 (normal is 150-450) makes Ally bruise like crazy!!! (And get ANOTHER transfusion of platelets and red blood cells) (Total transfusions since being in Boston = 7 or 8)

She was a champion sleeper this morning, waking up for the day at 9:30, so we only had to do 1 midday nap (happening right now).

The site where her central line goes into her chest is bleeding a little bit today as well, the docs say because of her low blood counts.

It looks like her ANC is sort of going up, at least it is not down in the 30's anymore. Looking forward to tomorrow and a high number (hopefully).

THURSDAY, JULY 31, 2008 09:12 AM, EDT
Not the ANC we were hoping for, BUT her white blood cells are going up, and the nurse said another factor in her blood shows that the ANC is really on it's way up, so hopefully from here out we will only see numbers going up.

Wednesday, July 30, 2008

. . . . . . Hey Hey! Someone we know about turned
. . . . . . . . . . ONE AND A HALF YEARS OLD
. . . . . . . . . as of 10:21 this morning! :~)

. . . . . . . . . . ......... ...
. . . . . . . .. . ||...||...||...||...||...||...||...||...||...||...||...|| . . . . . . . . .
. . . . ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ . . . . . .
. . . . ♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥ . . . . . .
. . . . . ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~. . . . . .
. . . . . ~~~~~~~~~~ ♥ H A P P Y ♥ ~~~~~~~~~~~~~~ . . . . . .
. . . . .~~~~~~♥ H A L F * B I R T H D A Y ♥~~~~~~~~ . . . . .
. . . . . ~~~~~~~♥ A L L Y S O N * M A E ♥~~~~~~~~~. . . . . .
. . . . ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ . . . . . .
. . . . ♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥ . . . . . .
. . . . ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ . . . . . .
. . (______________________________________) . . . . .

Ally's ANC count is staying around 100, but her platelet count is around 4 (four)
where 150-250 is normal, so she needs another transfusion...this may be #7, so far.

♡♡♡♡♡ Thanks so much for the vibes and prayers and candles!!! ♡♡♡♡♡

Tuesday, July 29, 2008

Monday, July 28, 2008

Postscript about Ally...

I learned on Saturday that the family reads all the messages on Ally's Candle Page
and greatly appreciates the felt support. If anyone is moved to do so, here is the
link to the Candle Page (website created by author and monk David Steindl-Rast!).
Simply follow the directions given. Sweet Thanks, Ally's Great Aunt listener

MONDAY, JULY 28, 2008 11:53 AM, EDT

Ally's Stats:
7/28: ANC = 35
weight = 19.14 lbs
Goal = ANC of 500 for three days in a row

Ally had a good weekend with her Daddy and a good time with Grammie and Grampa.

She has more mouth sores now, but not all over her mouth. She gets an extra dose of morphine when we have to clean her mouth. We have noticed the enamel has worn off her teeth near the gum line. They assure us this is typical, and that most kids recover from it okay. We can't do anything about it now, but hope to speak to a dentist before we leave.

Ally got some platelets last night (she was at 6, most kids are between 150-450). This is her 3rd transfusion in 4 days...if you were thinking about donating blood or platelets..go ahead and do it. It looks as though she is going to need blood every night for a while.

She is still in good spirits and LOVES to look out the window into the hall and play peek-a-boo with the people walking by! The docs are amazed at her energy level, and that she will still take even the smallest amount of food each day.

From Ally's Great Aunt listener:

When I spoke with Ally's Grandma (my sister-in-law) on Saturday she told me that the little red mark above Ally's eye is a birthmark, but the big red streak across her cheek is not. That's the mark left from the tape they used on her cheek during her surgery, made when an idiot ripped it off fast. They think it is slowly fading now. I said I didn't know how Ally's parents have not taken someone by the throat for that, and she said that they didn't have to because the attending surgeon pretty much did.

Anyway, that was part of the reason Ally had so much pain the day after surgery. Ally's Grandma said that aside from that one day, though, everyone has been wonderful and that even on that day Ally's nurse was trying exceptionally hard to get help for her. It wasn't until Patient Relations stepped in that within five minutes there was someone there to take care of the pain meds that Ally's Mom had request 8.5 hours before.

After last Monday's stem cell transplant they wait for Ally's ANC count to get to zero, then back up to 500 for three days straight before she can go home. As of Thursday Ally's count got to zero, then on Saturday it was up to 50. Plus her weight is up over 18lbs. So far, so good.

No new update given on Sunday...but Ally's Daddy was going to be there all weekend, so they were probably busy being together. :-)

Friday, July 25, 2008

FRIDAY, JULY 25, 2008 01:03 PM, EDT

So, sleeping has been rough this week. Every time someone enters the room at night Ally wakes up and cries, causing Mommy to go over and comfort her. It would be easier if we could sleep in the same bed, but we are not allowed. She seems to often be interrupted during her naps as well, hopefully a quiet weekend approaches.

Ally has also had a rough morning with some pukes. She is needing morphine more and more, and will soon be going on a machine that will just require the push of a button to administer the meds, rather than a nurse having to go find it and push it through her tubes.

Between all of that yuckyness Ally is still playful, still eating a little bit and will even smile and giggle!

Still waiting to hear what her exact ANC is for today, but the docs said it was about as low as it will go.

Thursday, July 24, 2008

THURSDAY, JULY 24, 2008 11:12 AM, EDT

Ally had an okay night. She needed morphine a couple times to calm down and go back to sleep. They will probably put her on a constant morphine machine to keep her pain under control. As of right now she only has 1 mouth sore, but she is still eating!

She had fun with all her visitors yesterday!

THURSDAY, JULY 24, 2008 08:09 PM, EDT

Ally's day was pretty good. It took her a while to wake up this morning, but as soon as her breakfast showed up, she perked up and ate some bagel. She had a good time with Grammy and Grampa today while Mommy got to leave the floor and have lunch with her boss! She did need some morphine after her afternoon nap, but perked up when she got to talk to Daddy on the computer. She is resting comfortably for the night...hoping it stays that way!

Wednesday, July 23, 2008

I thought you'd appreciate this photo of
Ally receiving her stem cell transplant...

TUESDAY, JULY 22, 2008 10:45 AM, EDT

Still smells like creamed corn.

Ally is a bit grumpy, sleepy and angry today.

WEDNESDAY, JULY 23, 2008 12:27 PM, EDT

Ally now smells like the jelly and crackers she has been eating this morning!

She is still in a pretty good mood. She does have at least 1 mouth sore, but she is still eating, and as long as we don't try to look in her mouth she is mostly okay.

Monday, July 21, 2008

MONDAY, JULY 21, 2008 12:33 PM, EDT

Ally seems to be doing better today. She is not as moody, has actually eaten some froot loops and even giggled!

She gets her transplant at 2:00. The transplant sounds all serious and complicated, but all that will happen is the nurse will hang a bag of blood and it will take about an hour to go in.

Today is considered Day Zero.

She had a nice visitor this morning, and is currently napping peacefully next to me!

Sunday, July 20, 2008

SUNDAY, JULY 20, 2008 06:17 PM, EDT

Chemo has reared it's ugly head. Ally was fussy for most of the day, was never able to get a really good nap in, went through 4 outfits, and made mommy go through 3 outfits. She got some benadryl and it put her right to sleep...I am hoping the 6:00 bed time does not come back to haunt us!

Overall the weekend was nice. Daddy spent the night and allowed Mommy 2 good nights at the Ronald McDonald house. Ally got visits from both sets of Grandparents, and got to see all her aunties this week! The best part is Daddy forgot to take some homemade brownies home with they are all for Mommy! (Ally is on a strict diet of no outside food.)

Well, the week ahead has someone visiting us every day! Ally will probably be medicated a lot to keep her happy and not pukey. Now we wait for her counts to drop to zero, and then up to 500 for 3 days in a row...then home! (Probably about 3 weeks.)

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, July 19, 2008

The Day

We choose our names
in this modern age, carefully
Pinning us to the old and secret
with a prayer that it will not vanish

Science fails us because we forget
that it is only the description of what is
Is not the is itself

While the lines to the new blink in and out
I am thrown back to ancient devices
A walk along the river, noting changes
new flowers, old holes filled, new beaches, new birds

Sit in the warm morning
with a cup of coffee and a cat
gingerly roaming, or strumming a tune
on the front door grill, wishing in

Listen to a bird call
bits of green in beaks, carried high
small rosy flicker tails building a nest
Spring's fledged already looking to be parents?

Windwalker, puddleriver, eagle seeker, white bear
omen, incantation, sign, prayer

8 July 2008

Friday, July 18, 2008

FRIDAY, JULY 18, 2008 06:31 PM, EDT

Well, Ally has sort of forgotten about being in the hall. She had a good day today with Auntie. She took 3 naps and completed her 2nd to last day of round 7 chemo!

I should have mentioned earlier, the bacteria she has is not an infection, it is in her intestines, if it moves from there, then it will be an infection. She has no side effects from it, in fact she has only shown a need for more and longer naps as side effects to the chemo (other than the 1 puke yesterday).

Things are going well and DADDY IS HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

FRIDAY, JULY 18, 2008 11:31 AM, EDT
Prayers and Good Vibes needed...

Sweet, sweet freedom....ripped away from us.

Ally has a resistant bacteria. She is back on precautions (wearing protective clothing) and not allowed out of her room. Early indications are this will not go away quickly, and most likely she is in the room until we go home.

At least yesterday afternoon she got out.

July 18th Full Buck Moon 3:59 am EDST

THURSDAY, JULY 17, 2008 07:23 PM, EDT
This day merits a second update!

Freedom is wonderful!

Ally and I both get to wear normal clothes! And all the smooches we can handle!

This afternoon the chemo started to catch up with Ally, she was a bit moody and only wanted to cuddle with Mommy. Her tummy was a little upset too, hopefully tomorrow it will settle down.

She crashed for the night around 7:00, about an hour before her normal bedtime, so I am just hoping that she doesn't wake up for the day at 5:00AM!

Thursday, July 17, 2008

THURSDAY, JULY 17, 2008 11:49 AM, EDT
Chemo 7, Day 4

We are almost free!

At noon Ally is due for her last chemo bath. After that she gets to wear her own clothes again AND.......go into the hall!!!!!!

She is still in good spirits, she has virtually stopped eating (they will start TPN on Sunday) and is sleeping a lot more, but still laughing and smiling!

(FYI: TPN is intravenous nutrition.)

Name your game -- you'll have to live with it. . . .

There is a marsh

There is a marsh
next to the river,
and between the river
and the road, a field

The river is a road
for the bats, at eventide
for the heron, come mornings
for the butterflies, every long hot afternoon

In the dirt road
next to my house
there was a turtle
nearly as flat as a plate,

and as large; but oval
When I returned
from my bath, she was gone
in the quick way of tortoises

Rain falls
river rises
meets the bridge I made
and pauses

On the beach
next to the river
a meadow is in the process
of making itself

There is the sound of a
new bird in the field
Today I saw him: blue bird --
an indigo bunting

Glorious in his blue
victorious in his blueness
alive in his bluedness
His blue essence that

she will smile on
Never was anything
more blue.
or ever will be

Nor I, never so aware
as today: I need this,
all, more than it
needs me. In fact, it needs me

Not at all.


Wendell ~~

Let me tell you
of my love for you
How you have set my blood
on fire, over
and over again.

A man I do not know
have never seen
and yet whose words
for close to fifteen years now
have spoken to me
over and over and over again
Have pierced my heart's home,
created light and love
and longing

Among my small human prides
is that I know a man who has stood
in your presence and conversed with you
about the ways of farming, and perhaps
of poetry, too, for he is a poet
as well as a dairyman
The webs of this world are a mystery to me,
but I know you have always been in this
child/girl/woman's heart, unknown and known
You have always been company and

And I thank you for taking up
the traces early, and keeping to them:
The farm, the history
the prose, the poetry, the politics;
For walking the marges carefully
and remembering to bring them back
those little lights, those glimmers,
for remembering and sharing
and passing them on

I can never forget the possibility
of a farmer in Peru falling out of his field
and have the pictures from elsewhere
in the web to prove you right
had I ever had a moment of unbelief. . . .

I love you. And thank you.

8 July 2008

Ya. Still. . . .

Wednesday, July 16, 2008

WEDNESDAY, JULY 16, 2008 05:44 PM, EDT
Chemo 7, Day 3

Ally had a fun day with Grammy and Grampa today! She is still acting like fun little Ally, but her food intake decreased dramatically today.

She started the 2nd drug in this chemo round, she gets it for the next 4 days. She is officially off the drug that seeps out of her skin, but we still have to do baths and wear protective clothing until noon tomorrow...less than 24 hours!!!

Strangely Ally keeps getting the hiccups.

Noxious weeds. . . .

Which proves my point, long held, that a weed is simply a flower someone doesn't want where it is. . . .

I know a man

Whose wife, the mother of his children,
having been saved by the blood of Christ
looked him in the eye and said:

I wish you would die. I am unequally yoked,
and you will not allow me to save you.
Rather than worry about you spending
eternity in hell, or me, because I cannot save you, I wish. . . .

And in the name of that, the Savior spent another
eternity on the cross.

And me? I wish only to be saved from the spawn of the savior.

8 July 2008

Girl, Dreaming

Child time about to end
I consider how short
the freedom
how soon the task

of adulthood is upon
the golden children
Riding the wild and
mystic horses into the future

Hers, and ours.

7 July 2008

TUESDAY, JULY 15, 2008 05:42 PM, EDT
Chemo 7, Day 2

Ally had another good day today. She was very playful and cheerful today.

She no longer enjoys the bath...I think it was the midnight one that was a little chilly that did her in...only 8 more to go!

I would like to mention how uncomfortable wearing a plasticy/papery gown and gloves is all day. I am super excited for Thursday at noonish when I can stop wearing them!

Monday, July 14, 2008

Once awake to love
there is no way to find sleep again without it
No matter what the cost
There is no other directive in this life but love
That is the only thing ever asked of us
Because in that one thing
is all else.

8 July 2008

MONDAY, JULY 14, 2008 09:04 PM, EDT
Chemo 7, Day 1

Day 1 of chemo was not as bad as I thought it would be. It is annoying to be covered up all day, especially when Ally is so loosely covered and thus needing the heat turned up. She is in a good mood, and FINALLY went to sleep just a little bit ago. Ally had fun with her visitor today and was super excited to see Daddy on the computer (videocam)!

Darth Grandfather

My child and his children gone
back to the grid city, grid life
Noting the mowing of my beach by his father:
daisies ruthlessly destroyed, but young bull thistles

left ~~ when questioned he says: You didn't ask
to save the daisies. So much for what is able
to be left unsaid. And I remember once again
why we are no longer partners. The sheer exhaustion of

needing to explain again and again each to the other
the magnitude of importance of daisies
or from the other side, of puts and calls; and
never any unspoken meeting of a mind on either side, ever.

And one lesson learned, and noted wryly:
keep machetes out of the hands of
Wall Street.
Or suffer the consequences

8 July 2008

Sunday, July 13, 2008

SUNDAY, JULY 13, 2008 04:48 PM, EDT
On the eve of Chemo 7...

Ally has been charming all the doctors and nurses. They all love to come in and see her.

She starts chemo tomorrow. It is a new drug that she has never had before. The crazy thing about it is the drug seeps out of her skin. She has to have a special bandage over her central line, she has to take a bath every 6 hours, change her clothes every 6 hours, change sheets every 6 hours, and anyone who touches her has to wear a protective gown, gloves and possibly a mask. This will go on for 6 days I least I won't be bored!

Saturday, July 12, 2008

P.S. Ally's Grampa reports that the nurses at Boston Children's are amazed at what a good patient Ally is! :-)

SATURDAY, JULY 12, 2008 09:31 AM, EDT
The latest from Boston...

Chemo has to wait until Monday. Ally needs to get her stem cells the day after Chemo is over, and the cell people do not work on the weekends. One more set back...but we are looking at it this way: She was originally supposed to start on the 15th, and now it will be the 14th. (Have we mentioned how much we LOVE Ally's usual hospital)? Despite all the set backs the staff here is wonderful and feeling our pain. Plus, they already realize Ally is THE cutest baby!

Friday, July 11, 2008

I was busy
.......................for Sarge

The whole of my life, till late --
slow learning, careful, each twig and stone
inspected, catalogued, archived. . . .

Successful, I think and thought, at seeking
out the crannies of the soul. Spirit had not
escaped my notice. And yet. . . .

The men I married, bean counters, focussed on
what could be touched, pictured, named, banked. Soul
soared, of necessity, alone. And for that I cannot blame them

The grande loves of my life given over, the poet to drink and
the actor, to death. My route delayed, I came late to silence
Late to the quiet mind. And then, out of that silence, a peace

so deep, there is no fathoming of it. So green and growing,
no counting of the beanstock of it, searching its tendrils out to the
edge of all that is known and unknown. No cataloguing of the why of it

I know only, with deepest gratitude, your shoulder in the night
to fall asleep against is a kind of a joy and a peace I've never known,
a sweet satisfaction and pleasure I have in no way earned

Simple symbol of the gift of yourself. Given wholly and compleatly
Received thankfully and without question. And given back entirely
I hope. And promise.

8 July 2008

FRIDAY, JULY 11, 2008 08:59 AM, EDT
From Ally's Mom in Boston...

We made it through the first night!

Ally is doing pretty well, she has not figured out she can't leave the room yet, we are expecting a bit of fussiness later today when she wants to leave and can't.

As always, Ally makes things interesting. She ran a fever last night, but after they gave her 1 dose of tylenol it went down, and never came back up. BUT....this could delay chemo. As it looks now we will HOPEFULLY start tomorrow (Sat.) This is a set back, as it makes our stay even longer, but to give her chemo with a fever would be terrible.

PS: Ally's view is of a brick building with lots of windows, not the best, but better than a blank wall.

FRIDAY, JULY 11, 2008 11:06 AM, EDT

We just got word, chemo will not start until Sunday at the earliest.


Thursday, July 10, 2008

THURSDAY, JULY 10, 2008 07:10 PM, EDT
News from Boston...

It has been a long day!

We are in Ally's room and getting settled.

Chemo will start tomorrow.

Wednesday, July 09, 2008

WEDNESDAY, JULY 09, 2008 09:43 AM, EDT
Now it all begins...

Last night Ally slept like a champ! She was in bed around 8PM and woke up for the day at about 8:30 this morning!

Tonight we are headed down to Boston. All 3 of us will spend the night at Ronald McDonald House.

Tomorrow (aka: Ally's Daddy's birthday) we need to be at Dana Farber for 9:15. They are going to walk us over to Boston Children's (our new home for the next month or so). Ally needs to have a kidney test first thing tomorrow. They will inject her with a tracer and then draw blood throughout the next 5 hours.

We are not sure if she will start chemo tomorrow, or if it will have to wait until Friday.

This first round is 7 days (I think), then she gets her transplant (which is basically a blood transfusion) and then we wait. They said 13-20 days is average.

She should be able to come home for 2 weeks, then back down to Boston Children's for the 2nd transplant.

...............Verifiable zone? Versed horizon?
.....................whose very name is gobble and gook

You slut ~~
You lied to me
You promised me words
and have delivered -- for 13 years --
holes. Oh, yes. Sometimes

you bother to fix it for a while
if I keep after you
you act as if you care
or turn to torture others for a while

But always return to me
And if I dare complain you ask:
Have you checked the outside box?
Yes. For thirteen years, I've carried
the phone outside in the dark,
in the rain, fog, snow, sleet,
and you know? It has never, once
in thirteen years been my one small foot
of wiring: it has always been you.

And now you have a new line:
perhaps the batteries in your phones are low.
Perhaps. But the computer has no batteries,
and you cut that off, too.
You keep no records, so every time
is new, you fake virgin. And every time
the game is the same: first this, then that,
then bad again. Day after dull day, week
after dull week, month after dull month,
till you come to the same place in month four
or month five, and fix it.

Clue: just go to that majical point
discovered on the 12th week,
or the 15th week,
and fix it FIRST.

If you were a husband, you'd be divorced
If you were a gigolo, you'd starve
and I'd gladly shovel dirt on your rotting corpse
If you were a child, you'd be headed for jail
without a soul to weep or wail.
As it is, I'm left to my own devise
and light a candle for your sweet, complete, demise
and chant an incantation for your trip to hell
devoutly wished, by me, my friends and family,
my love, and my Dell.
(The cat's not voting.)

8 July 2008

Tuesday, July 08, 2008

Also from listener:

The Warrior and the Stallion
As told by Marilyn Whirlwind
Northern Exposure, Episode 5.14 "Bolt from the Blue"

In the Laundromat
My uncle once told me about a warrior who had a fine stallion.
Everybody said how lucky he was to have such a horse.
"Maybe," he said.
One day the stallion ran off. The people said the warrior was unlucky.
"Maybe," he said.
The next day, the stallion returned, leading a string of fine ponies.
The people said it was very lucky.
"Maybe," the warrior said.
Later, the warrior's son was thrown from one of the ponies and broke his leg.
The people said it was unlucky.
"Maybe," the warrior said.
The next week, the chief led a war party against another tribe. Many young men were killed.
But, because of his broken leg, the warrior's son was left behind, and so was spared.

MONDAY, JULY 07, 2008 09:10 AM, EDT
Ally's Mom relates:

It was not the news we wanted.
It looks like our time in Boston has been stretched to about October.


listener and her Hubby responded:


This is a real blow to your hopes and probably makes a mess of Ally's Mom's teaching schedule for the coming semester. It's okay to feel sadness & angst and shed some tears. (We did, so you sure get to!)

Then we'll all pick up and see what needs to be done today. Let today's joys and struggles be sufficient.

We gather that the medical community randomises this decision because they don't yet know whether one or two transplants is the better treatment in the long run? We hope this extra bumpy ride will translate to better protection and good health for Ally all her life.

What do you need while in Boston? Please give us all some useful things to do to make your lives a little bit easier. Some instruction about what's not helpful is also welcomed. Will you want cards? Sent to the hospital or to the house? No stuffed animals, right? If folks send gift certificates for food, will you be able to make use of any of them? (Got preferences?) Also, what can folks do to help Ally's Dad when he's at home?

Wave your wand and the lot of us will find ways to make it so!


XOXOXXX Ally's Great Uncle & Great Aunt

Saturday, July 05, 2008

The Independence Day Massacre:
or The Day They Killed the Blog

It was a wordacide: they grabbed
our conversations, tossed them aside
dumped them into what they called
a water cooler, but we knew it was
a trick, a fooler, because they
deleted everything we said all day.

It was a communityacide. They decided
they had to get rid of us, and
the way to do it with the least
amount of fuss was by saying they
would make the blog more efficient, would
bring in new members, dispose of the deficient

in their ability to stay on topic. "Didn't
matter," they said, "how few the posters,
it was the substance of the writing,"
so said the hosters, Danny in his sincerity,
which somehow never brought clarity
and Pompous Charles with his scolding.

So, after five years of knowing
each other, being inspired, warmed,
informed, and sometimes heated, the feeling
is that we've been cheated, our
membership irrelevant, our wills ignored,
the community we made insulted and deplored.

It all happened on July the Fourth
the day we celebrate the Declaration
of our rights and liberties, our solidarity,
yet on Democracy for America, our
beloved blog, the functionaries
disposed of us, killed off our community.

~~ Pat Maslowski
AKA Pat in Colorado

SATURDAY, JULY 05, 2008 05:33 PM, EDT


Today was (and still is) another fun day.

We spent some time with friends...Ally LOVES to pull grass out of lawns, AND she got to see a wild turkey!

We were able to find a car seat for Ally today. We could not find the exact one we wanted, but we really needed to find one before the big drive to Boston, so we decided on a different one.

Ally finally gets a bath tonight! (She has had to miss some baths lately because of the bone marrow biopsy and the bandages covering those up.) Chances are she will still have a stinky foot (which is good....because the game would not be nearly as fun if it were "clean foot")

Happy Long Weekend! One more day!

FRIDAY, JULY 04, 2008 05:00 PM, EDT

Happy 4th of July!

Ally has had a super fun day today! We got to visit Grammy and Grampa's house (trying to fit in lots of out of the house visits before we are quarantined for 6 months) and eat lots of yummy food. Ally likes Root Beer!

Here is a fun stat for you: Ally's infant car seat (which she is still in) is good up to 22 pounds and 29 inches.
Ally is almost 19 pounds and she is 29 and 3/4 inches! She finally gets a new car seat.
Here is another fun stat for you: the 4 stores we looked in today for car seats did not have one we liked! Yippie.....guess we are going to push the height limit just a little longer on the infant seat.

Have a great rest of your long weekend!

Thursday, July 03, 2008

THURSDAY, JULY 03, 2008 02:36 PM, EDT
Ally's Mom writes:

I just called the hospital. One of the test results they need to figure out if Ally is going to have 1 or 2 transplants will not be ready until Monday, because of the holiday. Grrrrrrrrrr. So, we won't know until Monday now, hopefully this is the part that is jinxed, and we will get good news on Monday. Keep praying!

PS: Today Ally weighed: 18 lbs 12 oz!

The Peignoir

Vintage, perfect, unused
or nearly. Black silk soft
washing across the body
ivory lace crisp at the wrist
throat, thigh

long ago was treasured so much
or not? Who laid her
head upon his shoulder
and fell asleep in peace
Perchance woken later,
feeling the hand, just there
thrill with the touch
trill and twine --
or not?

Did he stand behind her
at the mirror as he let
down her hair? Watch it open
as she raised her arms to
brush? Fall shut as he wrapped his arms
around her, stopped the ritual,
began the next?

Old dolls, I know:
each perfect doll equals
one unhappy child
not permitted to ruin her
toy. . . . Kept for posterity.
Perhaps later pleased to pass
perfection to later generations

Peignoirs? A woman so glad
for the memories she wished to keep them?
Folded carefully between layers
of blue tissue. . .
Or desire cut short, too soon?

I choose to believe the first,
but that isn't my plan

I wish to see again and again
your eyes moving to the
perfect triangle between
the ivory lace as the black silk swings
open and closes again
briefly. . . .

To feel over and over
the shot of joy
as your lips curve
into that gorgeous wide gull-wing smile
which opens your whole face and soul to me
and to close my eyes and
fall, then rise and rise
and fly
And wake ├Žons later to find
the rumpled pile of silk and lace
on the floor beside our bed

I plan to wear this vintage peignoir
perfectly out

27 June 2008