Thursday, March 31, 2011

Worth reposting. . . .

Monday, February 21, 2011

Latest Ally update, hot off the press. . . .

Clear Scans!!!

Wednesday, March 30, 2011

Wow!! (click for the rest)

Evidence: Except at statistical extremes, body mass index (BMI) - or amount of body fat - only weakly predicts longevity [32]. Most epidemiological studies find that people who are overweight or moderately obese live at least as long as normal weight people, and often longer [32-35]. Analysis of the National Health and Nutrition Examination Surveys I, II, and III, which followed the largest nationally representative cohort of United States adults, determined that greatest longevity was in the overweight category [32]. As per the report, published in the Journal of the American Medical Association and reviewed and approved by the Centers for Disease Control and Prevention and the National Cancer Institute, "[this] finding is consistent with other results reported in the literature." Indeed, the most comprehensive review of the research pooled data for over 350,000 subjects from 26 studies and found overweight to be associated with greater longevity than normal weight [36]. More recently, Janssen analyzed data in the elderly (among whom more than 70 percent of all deaths occur) - also from 26 published studies - and similarly found no evidence of excess mortality associated with overweight [37]. The Americans' Changing Lives study came to a similar conclusion, indicating that "when socioeconomic and other risk factors are controlled for, obesity is not a significant risk factor for mortality; and... for those 55 or older, both overweight and obesity confer a significant decreased risk of mortality." [38] The most recent analysis, published in the New England Journal of Medicine, concluded that overweight was associated with increased risk, but only arrived at this conclusion after restricting the analysis by excluding 78 percent of the deaths [39]. They also used a reference category much narrower than the entire "normal weight" category used by most other studies, which also contributed to making the relative risk for overweight higher.

There is a robust pattern in the epidemiological literature that has been named the "obesity paradox" [40,41]: obesity is associated with longer survival in many diseases. For example, obese persons with type 2 diabetes [42], hypertension [43,44], cardiovascular disease[41,45], and chronic kidney disease [46] all have greater longevity than thinner people with these conditions [47-49]. Also, obese people who have had heart attacks, coronary bypass[50], angioplasty[51] or hemodialysis [52] live longer than thinner people with these histories [49]. In addition, obese senior citizens live longer than thinner senior citizens [53].

The idea that "this is the first generation of children that may have a shorter life expectancy than their parents" is commonly expressed in scientific journals [54] and popular press articles [55], even appearing in Congressional testimony by former Surgeon General Richard Carmona [56] and a 2010 report from the White House Task Force on Childhood Obesity[57]. When citation is provided, it refers to an opinion paper published in the New England Journal of Medicine [54], which offered no statistical evidence to support the claim. Life expectancy increased dramatically during the same time period in which weight rose (from 70.8 years in 1970 to 77.8 years in 2005) [58]. Both the World Health Organization and the Social Security Administration project life expectancy will continue to rise in coming decades [59,60].

Tuesday, March 29, 2011


The endings
are in the beginnings
one way or another

Flower turns itself to seed
the children move beyond us
into space we cannot even imagine

Carrying loads we know nothing of
We turn, then, to each other,
let them go,
and drink our tea

In the rosy twinight,
A grin, still,
at what they cannot
guess of us


Thursday, March 24, 2011

Most human in our fragility,
not wishing to ask
not wanting help

Most helpless at our entrances
and exits

When need is love
and love makes more

Around the bend
up the road
the willow is full green
and sparkles of gold lay in
the grass at road's edge

Do not hold your breath

24 Mars 2011

Wednesday, March 23, 2011

Wednesday, March 23, 2011 5:48 PM, EDT

Just when things are going along smoothly the universe gives you a boot to the chest and you land hard on your butt.

When I called the NYC hospital back today to find out about Ally's next HAMA draw they said one of the nurses wanted to talk to me. Ally's HAMA is still so high they want us to do another round of rituximab and cyclophosphamide. Uggggh. Setbacks stink, and it just brings up a whole new set of feelings, worries and thoughts. Plus, with the cyclophosphamide, Ally will miss school, as it is a chemo and her counts will drop.
Silver Lining: We can do this treatment at home.

I have not called the NH medical center to set this up, but I am guessing they will want to wait for scan results before they do this treatment, because if the scans are not clear (which they WON'T be!!!) then the point is moot anyway.


Tuesday, March 22, 2011

Tuesday, March 22, 2011 4:45 PM, EDT

It's Spring, but we got 2 inches of snow...

Anyway, Ally is still HAMA positive. I need to call back tomorrow to find out if we retest in 2-3 weeks or 3-4 weeks. You may be thinking...well, just split the difference and test in 3 weeks, but we have figured out the system. If they say 2-3 weeks that means her numbers are coming down and she is close to being negative, and if they say 3-4 weeks she is not close. So for 2-3 weeks we go for 2 weeks, and 3-4 we go for 4-5 that was a lot of boring info for you!

Anyway, next week Ally will have scans on Thursday, with a trip up to DHMC on Wednesday, as well, for the MIBG injection and to get the CT contrast (so we don't have to be at the hospital 4 hours before the scan to drink it). Her scans are planned for the afternoon, so that means a day of no eating. We need lots of prayers for a happy Ally and for CLEAR SCANS. I've said it before, but scan time is VERY stressful. We are always a phone call away from bad news. (Plus scan day is a super stress day at my work, as we are being inspected...yup, teachers get inspections too!)

Okay...that's about it. Unless something of note happens between now and then I will let you know about scans as soon as I know!

Thanks for thinking about us.

Sunday, March 20, 2011


Mother's Sacred Symmetry

Full moon
Last night
saw my first spider
my first fly

19 Mars 2011

SPRING EQUINOX, March 20, 7:21 P.M. EDT.

Wednesday, March 16, 2011


Monday, March 14, 2011


Is it necessary that we name ourselves?
And name again? Becoming kin
to star, and rainbow, and river?

Raven rises, and knows us not.
Claims us not. Laughing as
he flaps away.

We pull our dwelling close about our shoulders,
polish our window eyes to see,
and add a log, real or metaphorical, to the fire.

Child, my girl cousins named their dream steeds
Black Beauty, White Beauty. Mine? --
Paint Brush.

Did I mention I've never fit well, anywhere?
Desert, mountain, sky, rain. Always
just over the next ridge, the next valley.

Next dream.

14 March 2011

Have a most Happy Pi Day!

Sunday, March 13, 2011

Wage Peace

Nietzsche left big sky, long grass
in the space devoid of God.
Will to power is not a mad man
it is man, mad. and guns. The voices
of rustling grass from the graves
of lesser deaths, millions strong,
leaves of grass.

The Old Order too, shaman, priest
summon sun, rain, son, reign,
lesser deaths, sacrifice, wafer, grain.
Sustenance more than wheat
incantations less than words
or more.

Why do we insist noise is voice?
The wind chimes tinkle
waves lap lap lap lap
as Lion's tongue waiting for Gazelle
to thirst too. Our needs are animal,
plant, stars, earth,
love, immortality. Life.

By Phil Specht on Mar 13, 2011



More than voices
the gods in our heads
visions too
An infant mind
our mothers love
fertility goddess
turned clay object
bringing forth a fruitful crop
we pray to mother earth
our father's eyes not the first we see
his voice not the first heard.

Men offered forbidden fruit
lay down weapons
and leave the garden
now asked to return to fields;
what is that circle?.
Are the voices in your head
murmuring brook piano piece
cries of babe soothed
or the bellow of legions
charging the front.
The myths are bicameral
and so are we.

Drums of dance
drums of war, vows, chants,
discourse lost to the wind
lost to the waves
lost to predator lurking.
Had we not heard the rustle
would we turn to plant the spear
Or run when the ocean recedes?

By Phil Specht on Mar 13, 2011

Saturday, March 12, 2011

Just set my clock ahead an hour. . . .

It's now almost seven in my land. And I won't lose any sleep, lol!

ALSO: my first Phoebe today. Spring is on the march!!

Wednesday, March 09, 2011

Ash Wednesday


Because I do not hope to turn again
Because I do not hope
Because I do not hope to turn
Desiring this man's gift and that man's scope
I no longer strive to strive towards such things
(Why should the agèd eagle stretch its wings?)
Why should I mourn
The vanished power of the usual reign?

Because I do not hope to know
The infirm glory of the positive hour
Because I do not think
Because I know I shall not know
The one veritable transitory power
Because I cannot drink
There, where trees flower, and springs flow, for there is nothing again

Because I know that time is always time
And place is always and only place
And what is actual is actual only for one time
And only for one place
I rejoice that things are as they are and
I renounce the blessèd face
And renounce the voice
Because I cannot hope to turn again
Consequently I rejoice, having to construct something
Upon which to rejoice

And pray to God to have mercy upon us
And pray that I may forget
These matters that with myself I too much discuss
Too much explain
Because I do not hope to turn again
Let these words answer
For what is done, not to be done again
May the judgement not be too heavy upon us

Because these wings are no longer wings to fly
But merely vans to beat the air
The air which is now thoroughly small and dry
Smaller and dryer than the will
Teach us to care and not to care Teach us to sit still.

Pray for us sinners now and at the hour of our death
Pray for us now and at the hour of our death.

Lady, three white leopards sat under a juniper-tree
In the cool of the day, having fed to sateity
On my legs my heart my liver and that which had been contained
In the hollow round of my skull. And God said
Shall these bones live? shall these
Bones live? And that which had been contained
In the bones (which were already dry) said chirping:
Because of the goodness of this Lady
And because of her loveliness, and because
She honours the Virgin in meditation,
We shine with brightness. And I who am here dissembled
Proffer my deeds to oblivion, and my love
To the posterity of the desert and the fruit of the gourd.
It is this which recovers
My guts the strings of my eyes and the indigestible portions
Which the leopards reject. The Lady is withdrawn
In a white gown, to contemplation, in a white gown.
Let the whiteness of bones atone to forgetfulness.
There is no life in them. As I am forgotten
And would be forgotten, so I would forget
Thus devoted, concentrated in purpose. And God said
Prophesy to the wind, to the wind only for only
The wind will listen. And the bones sang chirping
With the burden of the grasshopper, saying

Lady of silences
Calm and distressed
Torn and most whole
Rose of memory
Rose of forgetfulness
Exhausted and life-giving
Worried reposeful
The single Rose
Is now the Garden
Where all loves end
Terminate torment
Of love unsatisfied
The greater torment
Of love satisfied
End of the endless
Journey to no end
Conclusion of all that
Is inconclusible
Speech without word and
Word of no speech
Grace to the Mother
For the Garden
Where all love ends.

Under a juniper-tree the bones sang, scattered and shining
We are glad to be scattered, we did little good to each other,
Under a tree in the cool of day, with the blessing of sand,
Forgetting themselves and each other, united
In the quiet of the desert. This is the land which ye
Shall divide by lot. And neither division nor unity
Matters. This is the land. We have our inheritance.


At the first turning of the second stair
I turned and saw below
The same shape twisted on the banister
Under the vapour in the fetid air
Struggling with the devil of the stairs who wears
The deceitful face of hope and of despair.

At the second turning of the second stair
I left them twisting, turning below;
There were no more faces and the stair was dark,
Damp, jaggèd, like an old man's mouth drivelling, beyond repair,
Or the toothed gullet of an agèd shark.

At the first turning of the third stair
Was a slotted window bellied like the figs's fruit
And beyond the hawthorn blossom and a pasture scene
The broadbacked figure drest in blue and green
Enchanted the maytime with an antique flute.
Blown hair is sweet, brown hair over the mouth blown,
Lilac and brown hair;
Distraction, music of the flute, stops and steps of the mind
over the third stair,
Fading, fading; strength beyond hope and despair
Climbing the third stair.

Lord, I am not worthy
Lord, I am not worthy

but speak the word only.

Who walked between the violet and the violet
Whe walked between
The various ranks of varied green
Going in white and blue, in Mary's colour,
Talking of trivial things
In ignorance and knowledge of eternal dolour
Who moved among the others as they walked,
Who then made strong the fountains and made fresh the springs

Made cool the dry rock and made firm the sand
In blue of larkspur, blue of Mary's colour,
Sovegna vos

Here are the years that walk between, bearing
Away the fiddles and the flutes, restoring
One who moves in the time between sleep and waking, wearing

White light folded, sheathing about her, folded.
The new years walk, restoring
Through a bright cloud of tears, the years, restoring
With a new verse the ancient rhyme. Redeem
The time. Redeem
The unread vision in the higher dream
While jewelled unicorns draw by the gilded hearse.

The silent sister veiled in white and blue
Between the yews, behind the garden god,
Whose flute is breathless, bent her head and signed but spoke no word

But the fountain sprang up and the bird sang down
Redeem the time, redeem the dream
The token of the word unheard, unspoken

Till the wind shake a thousand whispers from the yew

And after this our exile

If the lost word is lost, if the spent word is spent
If the unheard, unspoken
Word is unspoken, unheard;
Still is the unspoken word, the Word unheard,
The Word without a word, the Word within
The world and for the world;
And the light shone in darkness and
Against the Word the unstilled world still whirled
About the centre of the silent Word.

O my people, what have I done unto thee.

Where shall the word be found, where will the word
Resound? Not here, there is not enough silence
Not on the sea or on the islands, not
On the mainland, in the desert or the rain land,
For those who walk in darkness
Both in the day time and in the night time
The right time and the right place are not here
No place of grace for those who avoid the face
No time to rejoice for those who walk among noise and deny the voice

Will the veiled sister pray for
Those who walk in darkness, who chose thee and oppose thee,
Those who are torn on the horn between season and season, time and time, between
Hour and hour, word and word, power and power, those who wait
In darkness? Will the veiled sister pray
For children at the gate
Who will not go away and cannot pray:
Pray for those who chose and oppose

O my people, what have I done unto thee.

Will the veiled sister between the slender
Yew trees pray for those who offend her
And are terrified and cannot surrender
And affirm before the world and deny between the rocks
In the last desert before the last blue rocks
The desert in the garden the garden in the desert
Of drouth, spitting from the mouth the withered apple-seed.

O my people.

Although I do not hope to turn again
Although I do not hope
Although I do not hope to turn

Wavering between the profit and the loss
In this brief transit where the dreams cross
The dreamcrossed twilight between birth and dying
(Bless me father) though I do not wish to wish these things
From the wide window towards the granite shore
The white sails still fly seaward, seaward flying
Unbroken wings

And the lost heart stiffens and rejoices
In the lost lilac and the lost sea voices
And the weak spirit quickens to rebel
For the bent golden-rod and the lost sea smell
Quickens to recover
The cry of quail and the whirling plover
And the blind eye creates
The empty forms between the ivory gates
And smell renews the salt savour of the sandy earth

This is the time of tension between dying and birth
The place of solitude where three dreams cross
Between blue rocks
But when the voices shaken from the yew-tree drift away
Let the other yew be shaken and reply.

Blessèd sister, holy mother, spirit of the fountain, spirit of the garden,
Suffer us not to mock ourselves with falsehood
Teach us to care and not to care
Teach us to sit still
Even among these rocks,
Our peace in His will
And even among these rocks
Sister, mother
And spirit of the river, spirit of the sea,
Suffer me not to be separated

And let my cry come unto Thee.

Thomas Stearns Eliot

Tuesday, March 08, 2011

To honor women on International Women's Day, an old poem found in a notebook


There's something in us that waits,
eager children who are taught
to believe in Santa Claus,
Tooth Fairies, the holiness of birthdays.

It may be true to say we
females of the species are born
in love, learn longing through
our mother's embrace, trust it will

be satisfied, that earth and sky
are so designed to meet the heart's
desire, and it is all desire always
even when the hawk kills the swallow,

the snake devours the rabbit,
the father leaves his family,
the teacher reprimands, the best
friend betrays, the loved boy mocks.

Longing doesn't leave, isn't dismissed,
shunted aside and life approached
assertively, without pity for loneliness
or the sadness of rejection and denial.

No, we continue to wait and believe
eventually you will convince me
that you love me, take me
into your soul and cherish me.

But, it rarely happens if at all
and when it does, it doesn't last,
won't repeat, but still we wait,
hoping, believing in fairy tales.

(I will never again, (never say never)
ask you to love me more than I
love myself. Your love is a gift, she said,
and now to get on with living.)

~~ Pat Maslowski

Laissez les bons temps rouler!!

Monday, March 07, 2011

What a difference a day makes!!

Monday, March 7, 2011 11:51 AM, EST

Ally decided to share her illness. Daddy and I have been VERY sick since about 5:00 last night. We are finally coming around, but got very little sleep last night. At least we did not have to go the hospital. If she felt like we do, than that girl is my hero, because she never complained. I guess we will have to go back to work tomorrow, thankfully Ally is spending the day at Grammy ad Grampa's so Daddy and I can rest up, drink clear liquids and eat crackers. Oh I can't wait to feel better.

Sunday, March 06, 2011

About the flood. . . . Guess it depends on your point of view, lol!

An hour and a half ago:

A half hour ago:

A half hour ago:

Saturday, March 05, 2011

from listener:

So, I sent Ally’s Mom a note, since she has her computer with them. I asked:
“What's the latest progress report? Has Ally been fine once she stabilized? Any chance they'll give you a reprieve and let you go home this evening?”

Three minutes later came this reply:
“The papers are being drawn up for us to go home. That usually takes an hour or so.”

{{{ Hurrah!! }}}

Saturday, March 5, 2011 12:46 PM, EST

Yesterday Ally threw up a few times. She had some diarrhea right before bed, and then threw up again. We decided not to hook her up to her night time feeds, as we didn't want to be cleaning puke up all night. Around 4:00 this morning Ally called for Daddy because she was having a bad dream. He brought a blanket in and slept on the floor of her room for a while. She kept making noises and even yelling out half sentences. A little bit later I went in, we put her mattress on the floor between us. She wasn't really responding to us, but we thought she was just working through her sickness. A little after 5:00, we both couldn't sleep so we carried her downstairs and snuggled on the couch. We tried to wake her up, we were yelling her name, we where moving her about, rubbing her breast bone, nothing was rousing her, she was starting to seize up and looking off into space with mucus coming out of her mouth. We quickly got clothes on and rushed to the ER. They worked fast, and Daddy figured out they should check her blood sugar. It was critically low. They gave her some IV sugar and within minutes she came around, could talk to us, and seemed very confused about how she got to the hospital.

This was one of the scariest moments of our lives. We follow a couple of other kids on Caringbridge and we have heard many stories, so thoughts of strokes, seizures, blood clots and everything else was running through our heads. In my mind, I did not see a way she was not going to be harmed by this. But, alas, we are currently watching our 7th episode of Curious George, and Ally is ready to go home. The doctors, however, are not ready to let us leave. They are VERY concerned about her cancer diagnosis and it looks like we will probably spend the night.

Ally is fine though. Ally is fine.

We feel pretty stupid for not giving her the feeds last night, as in retrospect she had really had nothing to eat all day, because she threw it up, and then we didn't give her the feeds, so of course her blood sugar dropped. We already have a plan if she is vomiting in the future, so hopefully this will never happen again.
She is fine. We are fine, and she has already accumulated 3 stuffed animals.

Tomorrow will be a better day!

Friday, March 04, 2011

Thursday, March 3, 2011 2:53 PM, EST

Here is a picture of Ally taken a year ago.

Over the past couple of weeks I have been looking back over pictures of Ally in her past treatments. I was recently connected with another family in NH that has a son battling NB. They are down in Boston today, beginning a stem cell transplant. I have been talking to the mom on the phone about our experiences. At first I wasn't sure I wanted to connect with them, but I am glad I did. It has brought back a lot of memories and feelings, but I think the mom appreciates my take on things. We have also connected with a family from Ally's preschool. Up until recently only Ally's teachers and the school nurse knew about her medical history. It was frightening, letting others into our little world....they are such a great family, and I didn't want to scare them off. So, it has been a couple of weeks of talking about Ally's history. It is overwhelming.

And now to move on....
This week is vacation week!!! On Monday we just chilled out at home, because the weather man lied to us, and told us it was too dangerous to drive, so we did not go shopping, but stayed home and watched the rain (not sleet or freezing rain, or snow) come down...oh well, we cuddled like crazy. On Tuesday our good friend and awesome Mommy came over with her 2 month old son. This is the little 4 pounder I asked you all to pray for. He is over 8 pounds now, and could still use some prayers (can't we all!) Ally loved playing with him, and did a great job holding and feeding him. Yesterday we met up with Auntie Kelly at the Children's Museum. Oh the fun that was had! It was great to see Ally with so much energy. She loved it there, and wants to go back soon! We even met up with Grammy and Grampa for a tasty lunch of crepes!!! (Highly recommend the crepe place!) I think Ally is going to force Grammy and Grampa to bring her back there soon (on a non-school day of course!) Today we went over to one of Ally's preschool friends’ house. Usually Ally is very shy for the first 20-30 minutes anywhere we go...not today. The girls had a blast, and I had so much fun talking to another Mommy. Tomorrow we are going shopping with Auntie Lynn and maybe Uncle Jason! Then we get a whole weekend with Daddy!!!!

At school Ally has been learning about community helpers. Her favorite game to play with Daddy is "Vet". Daddy will bring in an animal, describe the symptoms and then Ally will treat the animal. It is very cute, because she knows so many medical terms, but does not always use them properly. I love to watch (as I am not actually allowed to play...this is an Ally/Daddy game).

Ok, I guess you can tell Ally is napping right now, as this is becoming an epic post, so here is the medical stuff:

Ally gets HAMA drawn again on March 17. I actually have to take her to the medical center for the draw, as our regular visiting nurse is out on medical leave, her backup is out on maternity leave, and the 3rd nurse is not allowed back in our house. Plus, we need the blood back, because we have to ship it, overnight, to NYC, and the local draw stations will not give it back to us. Road trip! We also have scans coming up at the end of the month. (Always a nervous time for us, please keep clear scans in your prayers.) If she is HAMA positive we will scan in NH, if she is negative we will take 2 weeks in NYC for scans and the 3f8 treatments. Details, details, details.

Have a lovely weekend!

Feeding the Lions of Haile Selassie

Truth exposed
the look on a face
would the smile spread
or the horror?

All who saw would know.
To right a wrong
Headphones on.
Burning Lady Gaga.

Tens of thousands
Square by Square
the Emperor's clothes
described, martyrs
spread the truth.

At great risk
would the lord of lords
wander naked before
the lions fed.

By Phil Specht on Mar 3, 2011

Wednesday, March 02, 2011


Watching Dusk

Flotsam jetsam
gin and tonics
on the deck

Captain Nemo
torments his organ
the same tunes every night

We talk you and I
melodies free us
from time through time

Stark pine boughs
arrange their faces
breathing mythical realities

Kites and swallows
growl as dogs hover
slavering jade air

Chewing memories
salt, lemon, cinnamon
the sky's a traffic jam

Charcoal vortex
millions of eyes
twitching grabbing

History pounces laughing
daubed in smears of incense
we cannot run away

~~ Pat Maslowski

Tuesday, March 01, 2011

Consider ~~

Daylight Savings Time is less than two weeks away! March 13!!!

And rejoice!!