ALLY UPDATE from Ally’s Mom:

Ally, with a mouthful of M&Ms. ;-)
Hello All,

Things have been going well for our family.  We are all doing well with school and jobs.  Ally (and Mommy, a teacher) will be finishing up school in about 3 weeks.  Ally has enjoyed 3rd grade this year, and is still involved with dance.  Her recital is coming up in mid-June.

We continue to work on putting weight on her.  It is a slow process, and she has not gained much over the past 5 months, but she hasn't lost any either.  Hopefully a hot summer full of ice cream will help.

Over the summer Ally does need to have ear surgery.  She has a hole in one of her ears from the tubes.  They are going to take some cartilage from another part of her ear to fix the hole.  This will mean no swimming and ear plugs in the shower.  There is also some hearing loss with the weeks to months recovery process, so we split the difference and scheduled it for the very end of July, so she would only miss a couple weeks of the local pools being open, and hopefully some hearing would come back before school starts.  She is not looking forward to this, and is mostly upset that it will hurt for a while, and she will be dizzy for up to a week.  I promised her lots of cartoons, snuggling on the couch, and waiting on her hand and foot for a couple of days.

That's about it for now.  I will be sure to update after the surgery.

Happy Almost Summer!

Joy!

Happy New YearBy Ally’s Mom

Earlier this month we visited NYC for a visit with the Long Term Follow Up Care Team.  Ally had blood drawn, an echocardiogram, and an EKG.  We got a call today that all of her tests came back looking good!  That is good news, as her treatment has the potential to do real damage to her heart, but so far it is looking good.  The biggest concern for Ally right now is her weight.  Over the year we were gone from NYC Ally grew about an inch, but lost weight.  We are trying to add calories to her wherever we can (back to whole milk, ice cream for dessert often, full fat and calories yogurt, etc.)  We are also trying to add benacalorie into some of her foods; despite the amazon reviews you can taste it in many foods, and it tastes gross.  She has already gained 0.6 pounds this month!  We go back to MSKCC in NYC next December.
In the meantime we are headed up for a check in with our NH team near the end of January.
Happy New Year! ♡

 

recap

Sunday, April 30, 2006

Last night,

after the March, and after the volunteers get-together, we walked to Ground Zero. It was difficult for both of us. He, who has lived in this city most of his life, and who has been there before, and for me, whose first time it was.

There is a presence there not like anything else I've ever felt. And memories. And, yes, tears.

And, after the tears, anger that this unspeakable tragedy has been used as the pretext for so much additional evil.

Posted by puddle at 4/30/2006 05:51:00 a.m.

Five Years Cancer Free

 

High Risk Neuroblastoma has a 40-50% five year survival rate.  January 7th marked five years for Ally!  She is one of the lucky ones.  Meeting the five year mark means that the likelihood of her cancer coming back is significantly smaller, although it is never 100% certain to never return.  We are so blessed to have Ally.  She makes us laugh, she makes us proud, she makes us joyous, and she makes our hearts burst with love.  Her amazingness is something I have never seen an equal to.  Every day we have with her is a gift.  We know we are lucky with her outcome.  

I ache for those
standing in their broken bones;
ache too for those who broke the bones.
And for the one who counts the minutes till release.
And for the one with pen in hand,
recording it all.  All.

We are animals, and not wise.
What we have is our likenesses--
two arms, two legs, two eyes,
one heart.  And if that heart is gone
who are we, what are we, and how do we breathe?



jjl
16 December 2014

Today Ally had her MIBG scan. It came back NED (No Evidence of Disease)!

 

The days leading up to the scan have been stressful.  The last time she was scanned was 6 months ago.  This was the longest we have gone between scans.  Our scanxiety will have to wait even longer now, because her oncologist thinks this should be her last scan.  This is great news, in that she feels Ally has progressed enough to not have to scan her.  This is also nerve wracking, as there will always be that element of not knowing for sure.  Her oncologist did assure us that if we felt, for any reason, that something wasn't quite right, we would go ahead and scan.  We will head back to DHMC in 6 months, just for a check in.

Our next appointment brings us to MSKCC in December.  This is with the long term follow up care team.  We are looking forward to them being pleased with her progress (she has gained over 5 pounds in the past 6 months...she is actually in the 5th percentile now!!!) and spending the weekend in NYC.

Thanks for following us and sending your positive vibes, thoughts and prayers our way.  I'll be sure to update about New York.

Happy Thanksgiving...there is so much to be thankful for!

Love Actually

 THE CHRISTMAS WHALE

THE NATIVITY LOBSTERS

Worth the price of the DVD just for the Christmas pageant.

 Shougo Yokota 

"Diphylleia grayi" (Skeleton flower) ~ The petals turn transparent with the rain.
 

  Ally had scans for the 21st time, breaking the scans record at the hospital!  She is still cancer free, so now instead of scans every three months it’s now every six months!!!

♥ Today Ally has been cancer free for 1500 days! ♥

ALLYLUIA!!  CLEAR SCANS!!!  Ally turns 7 tomorrow!!!
Let’s fill her Candle Page with lit candles! :-) 

http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=ALLYS

 

 

Ally has had 2 fabulous days of first grade!  She loves everything about being at school!  She even loves the after school program at ther school, run by the local YMCA.  But let's face it, she LOVES, LOVES, LOVES her teacher!

She comes home exhausted and grumpy, but about 5 minutes into dinner and she is back to her normal self.

We are so thankful that Ally is having such a positive experience with school. We know we are a very lucky family.  Neuroblastoma is a nasty disease that doesn't like to let go; and so many other families do not get to send their children to school.

September is childhood cancer awareness month.  Please think about something small you could do to ease a family battling cancer; donate money, time or a skill you have, making cards, or sending in a little boredom buster to your local children's hospital, Ronald McDonald house or the like is a great way to help out.

Happy Whistle Pig Wednesday!

Life is strange, the paths we take, and are sometimes forced to take.  In the late eighties when my mother in law came from China to live with us, we gave her our bedroom and moved to the rec room.  She'd had dreams of streets paved with gold and was very disappointed.  I tried to tell her how well her son was doing, but it didn't meet her dreams.  They spent several hours together every night.  In the event, she was telling him he could do better than what he had, than me.  He tried to start his own business on top of a very demanding full time job.  I was working 16 hours a day on a new crafts business and both of us working against a recession.  She left the next summer for her daughter's wedding in China.  When she returned, my marriage was dead, and he was living with a new woman who'd been helping him with the side business.  She hated the new woman and her kid, and finally decamped permanently for China.  Josh married the new lady a few years later, had a little girl and left her less than a year after the marriage.  Both businesses went belly up in Bush's little recession, I sold the house and tried California, and was back in a year, and ended up here.

The summer I bought the land with my last $20,000, planning to build, I recall sitting in the grove where my living room now is, and finally just turning it over to the Universe.  I had $60 in the bank, I was living in a tent made from blue tarps clipped to the frame of my craft booth and winter was making itself present every night in the 30+ degrees I was getting regularly.  It was perfectly clear that I was *not* going to be under roof before winter was fully present.  I believe that my exact words were: I have come as far as I can on my own.  If You want this to happen, it's Yours. 

Evidently, the Universe did want it to happen because literally within a few *hours* things began to turn.  That afternoon a stranger drove down the road with a message from John's store to call my ex.  And the wheels were put into motion that gave me a place to live for the winter and support to do so.  Before winter came my friends and relatives had helped me put in the telephone poles that were to be the foundation of this home.  It was to be the coldest winter of my life, before or since--minus 28º temps and the biggest snow storm (3+ feet).  By Christmas Eve the next winter I moved in to stay.  And have to say, it's been the most interesting score of years I've lived so far.

I'd hoped to live to see it finished.  I won't.  But Lord Willing, my son will.  I hope so.

Girl green, dog, river, sun

http://newfarm.rodaleinstitute.org/features/2005/0205/specht/index.shtml


 

Philosopher Of The Land (The Unified Theory of Everything)

Birds to the mulberry tree
dessert after insect meal
do they carry the life force to the mulberry seed?

The grazing cows stirring the plants
rough tongue made to rend the green curtain
there for certain life is given and received.
But new tree under fence post telling of birds.

Seeing the whole
Bugs and birds, plants, animals
under a wide sky, blessed by the sun
under a watchful eye, a knowing eye
"come bos"
come I know greener pastures.

I know greener pastures.

So with Dan's gentle call
first the wisest begin to follow
(he does not fail them)
for rain falls on just and unjust
and not needing to wander 40 years
find a promised land under a watchful eye
as they pass the gate.

Phil Specht

Phil Specht  ~~  Our fishing camp had "morning meditations" of poetry this year and William Carlos Williams was a feature one morning. Sent me on a Frost jag since (who knows why?) and this story brought A White Tailed Hornet to mind... part of the last stanza since the hornet got it wrong That really takes away instead of gives. 

 

Our worship, humor, conscientiousness

Went long since to the dogs under the table.

And served us right for having instituted

Downward comparisons. As long on earth

As our comparisons were stoutly upward

With gods and angels, we were men at least,

But little lower than the gods and angels.

But once comparisons were yielded downward,

Once we began to see our images

Reflected in the mud and even dust,

'Twas disillusion upon disillusion.

  


Bending for Love

The forest understudy is not linear
sunlight breaks through there
a young tree here.
A Cherry twists and turns
first to that and then this
moment in the sun.
Til grown, safe from harvest,
from industrial sawmill,
its curves would not yield utility.
In a artisan's loving hands
could be transformed.
Held, touched.
Or here, seen for what it is as it stands.
Already beautiful.  


Phil Specht   April 14, 2013

Ally update in advance of spring!

Things have been going very well in Our Household. Ally is fully recovered from her surgery. In the pre-op appointment the surgeon asked if we would like him to fix up the scar from her Mic-Key button (feeding tube), so we got 2 for the price of 1! Ally's belly actually hurt her a lot more than the port scar (up in her collar bone area). She was on pain meds for a few days. Her port removal scar sticks out from her shirt. A few of her classmates have asked her about it. We asked her what her response it to it, and she told us she just pretends she didn't hear the person until they stop asking her the question. We told her it's okay to tell the other person she doesn't want to talk about it. Ally is realizing that not every kid goes through what she went through, and I think she is nervous and anxious to talk about her treatment with other kids. Understandable!

On the Ally medical front: Ally will be scanned again in April. She just got 4 shots in her legs last week (we are re-doing her vaccines). She weighs close to 36 pounds!!! Her dentist appointment went well today...of course she needs to floss more; but don't we all?

Thanks for checking in!
Happy Mud Season!

This had 167 pieces of spam.  Easier to delete the original along with it, and just repost.  Hope this doesn't happen too much more. . . . 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And one morning all that was burning,
one morning the bonfires
leapt out of the earth
devouring human beings
and from then on fire,
gunpowder from then on,
and from then on blood.
Bandits with planes and Moors,
bandits with finger-rings and duchesses,
bandits with black friars spattering blessings
came through the sky to kill children
and the blood of children ran through the streets
without fuss, like children's blood.

Jackals that the jackals would despise
stones that the dry thistle would bite on and spit out,
vipers that the vipers would abominate.

Face to face with you I have seen the blood
of Spain tower like a tide
to drown you in one wave
of pride and knives.

Treacherous
generals:
see my dead house,
look at broken Spain:
from every house burning metal flows
instead of flowers
from every socket of Spain
Spain emerges
and from every dead child a rifle with eyes
and from every crime bullets are born
which will one day find
the bull's eye of your hearts.

And you will ask: why doesn't his poetry
speak of dreams and leaves
and the great volcanoes of his native land.

Come and see the blood in the streets.
Come and see
the blood in the streets.
Come and see the blood
in the streets!

Extract from "I'm Explaining a Few Things" by Pablo Neruda


Thanks, nordy!!

Thanks, Barb!

Sorry, friends. . . .

After a couple of hours and  the beginnings of a repetitive-motion injury, I'm having to begin using a word recognition filter for comments.  In the past few days, I've had to remove dozens and dozens of comments from one particular spammer, and my patience it at its end. 

I realize by the time it reaches me, no human is any longer involved, but for the human first mover, I wish for you and all your spawn the fleas of a thousand camels to discover and make home in your pubic area. 

Life Changes


So much has to do
with hope, the sense
of light, of kindness
and goodness, and beauty
now that we can be
aware, sit for a while
talk to a friend. Before
our lives were a scurrying
racing across the meadow
chased by hawks, searching
for sustenance, a place,
watching, moving, gathering.

What to do now that we
haven't
the need to leap to the
tree
bounding from branch to
branch
finding the nuts and hiding
them.

What's an old squirrel to
do? 

 Pat Maslowski

February 9, 2013

= ♡♥♡ Awesome Ally Amazes Again! ♡♥♡ =

Written 1 hour ago by Ally’s Mom:

Everything went well. We are home, resting, watching cartoons and taking pain meds.
A nap seems like a good idea too.

The US Senate Cabinet Hearings.

The Iowa Quarter's tribute to education, Wood's Frozen Hill
sits on a ridge down across Buffalo Creek
bones collected for fertilizer by pioneers
who built another school nearby where the beasts had fallen through ice
nearby where I fell through the ice, skating too late in spring.
My brother plunging through coming to my rescue,
for looking to the horizon of Young Corn familiar sloughs
lead down to the Buffalo ponds. Grant Wood lives in me.
As does a view of a hole in the ice from below
A brother coming to my aid a story as familiar as every veteran's
tale of jungle or desert comrade fallen; a long dark wall, classmates, later.
For that day was bright, and looking up and seeing a proverbial light in pond water tunnel,
feeling bottom I "jumped" at the chance to end my war
and laying on the edge of my hole on the still thin ice
rejoiced as my brother broke his way to shore.
Both soon home by hearth; my wish for all like me
forever stuck with tunnel vision. Jump.

Phil Specht  31 January 2013

Ally is six!!!!!!

We are celebrating by mommy and daddy being home sick, and Grammy and Grampa  thankfully taking Ally for most of the day, so we can rest. Ally's morning Kindergarten was cancelled because of the icy conditions as well. Fun times!

Over the weekend Ally started to get "goopy eyes". She also said her ear hurt, and when she laid down for bed, she said she was dizzy. We were hoping it would pass quickly, but she was not any better on Monday. So, we called up her pediatrician and got her in that night...double ear infection! They were not so bad that she needed antibiotics, but with her surgery on Friday, the doctor gave them to us; so Ally will be good to go. The doctor also prescribed some eye drops (although she did not really think Ally had pink eye) to clear those up for the surgery as well. Ally is doing well with the meds, although she hates the "pink stuff" (I did too, when I was little). Her energy is as high as ever, and she is super excited about her birthday. (She is a little bummbed school was cancelled this morning.)

We are all set for port removal on Friday.

Happy Birthday to our little miracle!

 

Very lovely photo from crazycritch on fickr.

♡ Awesome Ally had CLEAR SCANS today!!! ♡
This means she has been in remission for three years! ☆☆☆
Ally was diagnosed 5 years ago next month with the rare and aggressive neuroblastoma.

She will turn 6 years old on January 30th. :-D

May she live a long and happy, cancer-free life!

Her family is ever thankful for your prayers during this long and surprising journey.
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❄ ❄ ❄ ❄ ❄ ❄ Happy Dance Time! ❄ ❄ ❄ ❄ ❄ ❄

Jakeof

Who would vote for this man?

It's written all over his face!