TUESDAY, FEBRUARY 24, 2009 02:23 PM, EST
We got news about Ally's surgery. She will have a port placed on Monday morning (first surgery of the day). On Monday afternoon she will get her first dose of chemo. A busy day for Ally.
The port is a device that will be placed under Ally's skin, on her torso. It is good because it is under her skin and we won't have to maintain anything or worry about it getting caught on anything. The bad part is Ally will have to be stuck with a needle for EVERY dose of chemo (5 days on, 2 days off, 5 days on, 10 days off). We do have some numbing cream that hopefully will help make it less painful.
Ally has been enjoying all of her visitors these past few days! She has really enjoyed going to the store. She loves to touch things hanging from the racks.
Ash Wednesday
I
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.
II
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.
III
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.
IV
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
V
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.
VI
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
Somehow Mardi Gras makes me remember her more than does Mothers' day. She died on Mothers' Day ~~ and was so alive to Fat Tuesday. . . .
| | |
| jc Something deeply kind as rain is kind and bright like sun sparkling on running water Constant, like the love of robins for each other for the fledgling As strong as a hawk's wing is strong meeting the edge of air As brave as parenting: what's loved can always be lost Quick as laughter Tender as song Good and loving friend I'm sorrowful you are gone The simple pain of breathing in a world where you are not Yet choose, yes choice, to see you free and riding wild and clear again Wholly yourself, spark among spark, along the ringing marges of the nebulae waiting for us to come home ♥ | |
SATURDAY, FEBRUARY 21, 2009 07:19 AM, EST
Ally is already in a chipper mood today...it is very strange to have this terrible news and have Ally be so happy and energetic.
I was looking back through my old posts and it turns out February 19th is the worst day of the year. In 2008 that was the day we found out Ally's cancer wasn't just bad, but the worst form of neuroblastoma. In 2009 it was the day we found out it was back. Next year we are just going to skip that day...this is us calling out of work in advance!
FRIDAY, FEBRUARY 20, 2009 07:01 PM, EST
Our expectations for today were for the doctor to tell us to take some time off of work because Ally had very little time left.
That is not what we heard. The news is not great, but we are going to get to keep Ally for a little longer.
We always knew if the cancer came back the cure rate was about 0%.
Our plan is as follows: Ally will get a port placed (probably next week). She will then begin chemo where every 22 days she will have 5 days of chemo, 2 days off, 5 days of chemo, 10 days off. The doctor has said that in the past this has worked for other kids for months, up to a year. When the chemo is no longer working we will re-evaluate.
The strangest part of this whole thing is that Ally is not in pain. The scans show that the cancer has spread to her bones, causing lesions on the bones of her hips and upper legs. The doctor said this should be causing Ally lots of pain, but she doesn't seem to be in any.
Thanks for all your kind thoughts and prayers the last couple of days.
THURSDAY, FEBRUARY 19, 2009 05:04 PM, EST
We made the hour's drive to the hospital and home today. The drive up was a little scary at times, but we were there on time.
Yesterday they placed an IV in Ally's left hand. They used that to give her the MIBG injection yesterday. Today they used it to give her the medicine to put her under, and for fluids. That worked well.
When my part was done and I had given her a kiss they said it would be about an hour and a half for all 3 tests. We went for some breakfast and then waited in the hallway for a while. The last test to be done was back in "Pain Free" so we knew we would see Ally go by and then have to wait a little bit more. So.....at the 2 hour mark when she still had not gone by for her 3rd test we were a little nervous. We found out that one of the machines (CT or MIBG) was new and the camera kept breaking. Finally they wheeled her by and then we waited another 30 minutes for the bone marrow stuff.
Ally woke up all cute (every once in a while she wakes up angry). We gave her some food and then we were able to leave. Ally decided she needed to walk all the way from Pain Free (by Pediatrics) to the parking garage, on the other side of the hospital. That is a long walk for a wobbly toddler. (Normally she walks fine, but the anesthesia made her wobbly.)
We are still waiting to hear about test results. I will be sure to post as soon as we know....this is the test that tells us if the cancer is still away.
How in the world has 3 years gone by since Tanner was first diagnosed. It is so strange. I remember on the first anniversary of the diagnosis, i thought about sending out cards that said "it's been a year, I'm still here!" Maybe i have a dark sense of humor. I will NEVER forget sitting on Tanner's bed next to Dr. Meyers, and having her explain the gravity of the situation, and realizing that my precious baby boy, who I loved more than life itself, might not live to turn 2. But, he did!!! Now, he's almost 5. Can you believe it? We are so blessed, so grateful. Words cannot explain....
Tanner is doing well, overall. He's loving preschool (most of the time) and is getting so big. He likes to tease his older brothers. He writes his name so cute, and yesterday he wrote ZOO. He was so proud of himself.
Thank you to every one of you who has traveled this crazy journey with us...we love you...
And to our friends, new and old, who are still on the cancer-coaster, know that you are always in our hearts.
Megan
. . . the former president dismisses waterboarding as a spa treatment at Bliss, and reveals that he did walk in on Cheney once in the basement of the White House locked in the amorous arms of a giant goat devil in a room full of pentagrams. “He looked at me with solid silver glowing orb-like eyes, and his breath had a strong ammonia scent to it,” Ferrell’s W. said. “And he told me in a language that I knew in my heart hadn’t been spoken in a thousand years ‘Pariff Go Lanerff!’ And I just ran.”
ONLY IN CANADA EH?
Swimming with polar bears ??
There's a place in the world where children can swim among polar bears. Since July 2004, in the little town of Cochrane, northern Ontario, you can visit the Polar Bear Habitat. It's a kind of local zoo where people can live the once-in-a-lifetime experience of an outdoor swim with polar bears. Of course, the humans are in a different pool, separated from the bears' habitat by just a layer of glass.
Can you see the water drops now?
There's a bullet proof, shatterproof glass that's almost 9 centimeters thick, because although they're cute, polar bears are among the world's most ferocious carnivores.
It took 20 years for the Polar Bear Conservation and Education Habitat and Heritage Village to it get off the ground.
When it opened it attracted some 11,000 visitors in the first six months.
And now you're invited to go and swim with all those bears if you dare.
200 years, Lincoln's Second Term
Union, have we forgotten we are one nation?
joined? (there is still much healing before us, divided land)
Lay down the language of war.
Now with malice towards none
the work not done
called to hope, we have a dream.
There is more.
Dream of our mother, dream of our father,
not just a land, but beyond
and within.
Kitchen table worries, peace
Butter, honey, biscuit peace.
Lay down the language of war Presidents
born of peace, heal a nation
with malice towards none.
Past rage laid down
we mark the graves.
It is the birthday we celebrate,
the new day, the possible
the open door.
~~ Phil Specht
