Wrote this for my Achalsia support group

Last June, when the active phase of this "condition" stepped up exponentially, and I hit the internets again (had been researching all along, and had settled on "esophageal dysmotility" as a working definition), and realized that the long term outlook wasn't all that fine, I remember one night thinking: Well, maybe a feeding tube ISN'T all that bad. . . .

Aside from the fact that I smoke -- or maybe because of it -- I've otherwise always been a "health nut." My mother was a researcher/actor too: she learned how to cure my dad's migraines with grapefruit juice (vitamin C), so I come by it honorably. At any rate, since I too have migraines, and smoking about halves your Vitamin C, I've for long been a big fan of extra C. Many of the alternative meds I came across for achalasia (B complex, L-arginine) were things I've taken on and off for years, for other reasons. Being a low energy type, I've taken B-150 for years; and L-Arg for BP. In that context they both *helped*. Found one of the other achalasia self-help sites last year, and restarted the B-100. It helped. Restarted the L-Arg after the doctors kept trying to prescribe CCBs. It helps.

As do Hawthorne, magnesium, Co-Q10, Vitamin C. As do nicotine, caffeine, butter, tomatoes, lemonade, chocolate. . . I quit smoking for five days in the hospital (involuntary), and voluntarily for four days two weeks later -- in the hospital while being IV fed, it wasn't that hard. At home, in four days, the esophagus/LES just shut down, period: I lost seven of my hard-won pounds in those four days, and could feel the dehydration raising its ugly head again. I restarted. The effect was *immediate*. . . .

Never been an enemy of chocolate, nor that much of a fan. Last year, I suddenly started *longing* for it. . . . I watched that longing somewhat bemused, but there it was, and I indulged it. More interesting, and flummoxing to me was in June and the sudden HUGE desire for Mountain Dew. I've *never* been a pop person. And suddenly I was going through two 12 packs in a couple of days. About that time, I suddenly NEEDED bananas, which I hadn't bought for decades. And lemonade, which I was even making at home. Mountain Dew? Co2/caffeine: relaxes LES. Chocolate? Relaxes LES. Lemonade? Acid, relaxes LES. Bananas? Potassium which was low, and getting lower as I lived more and more dehydrated.

Mind you, NONE of this was being done because I was attempting to mitigate or ameliorate the achalasia, which I had in fact *discarded* as a diagnosis. (Imagine my surprise seeing that bird's beak on the barium swallow!) This was simple body-wisdom.

But the truth of it is, that as hard as my body was/is working, it is NOT enough on its own. Even IF it were to get no worse, I am unwilling to continue to live like this. Food is nice, but I am totally unwilling for it to become my only occupation for the rest of my life. And, too, I'm cheap: I HATE paying for and tossing most of what I've paid for. Makes me furious, lol!

But the fact is -- those cells are going to continue to die. Not one thing I can put into my mouth, nor medicine, standard or alternative, is going to change that. Reiki, acupuncture, massage, *nothing* is going to get those dead nerves to wake up and smell the NO.

THEREFORE, I very glad for the medical profession, and the state of the art as it is today. Sobering to consider that in my one little lifetime, I've had two auto-immune diseases, *both* of which would have killed me 100 years ago. (The other was Graves Disease.)

Guess I'm just trying to say, especially to the noobs who are pretty much in denial, that alternative medicine can *help*. . . . what it can't do is CURE. Nor, for all that, can the wonderful surgeons of our lives. . . . They can do a better job, make this damned condition at least livable. But that's all.

Part two of this rant is shorter. While searching for something/someway/somehow to eat enough to keep from starving (post hospitalization), and remembering my sense that maybe a tube wouldn't be so bad, I stumbled across a number of websites for people who have NO choice: Head/neck/mouth/tongue/pharyngeal cancer survivors, ALS, a guy in Australia who has scleroderma. The guy in Australia cooks for his feeding tube (and uses a top of the line blender). He says he's been doing much better after he got off of the canned formulas for his tube. And he at least can enjoy the process and smell of the cooking food.

And I just need to say: WE really don't have it all that bad. Really.

Another one of Unca Logan

Quiet day, yesterday. Mostly doing some followup (well, a LOT) on the new ancestress my sister discovered. She's been sort of an icon in the family (the Indian Grandmother), never identified by name before. Evidently my mom told one of my brothers that we had an Indian Princess in our background. Well if being the daughter of a very important chief makes you a Princess, then yup.

Interestingly, he *wasn't* Native. He was born in Montreal, and captured by the Oneida as a child, and just stayed with them. He married a Cayuga woman, and became the Iroquois "governor" in PA. He named (last name) at least three of his children after the Quaker "governor" that he dealt with -- Logan. My GGGG Grandmother, Ann Shikellamy Logan married a Colonel John Gibson. Her brother, James Logan became a war chief in the Mingos and a great peace leader, until his family, including my grandmother was killed and scalped (by white men) at the Yellow Creek Massacre. Which was in WV.


The only survivor of that Massacre was my GGG Grandmother, Polly Gibson. Interestingly, her father, Col. John Gibson, had been captured by Indians as a teenager, and adopted, and so survived. . . .

Logan's Lament. . . .
"I appeal to any white man to say, if ever he entered Logan's cabin hungry, and he gave him not meat: if ever he came cold and naked, and he cloathed him not. During the course of the last long and bloody war Logan remained idle in his cabin, an advocate for peace. Such was my love for the whites, that my countrymen pointed as they passed, and said, `Logan is the friend of white man.' l had even thought to have lived with you, but for the injuries of one man. Colonel Cresap, the last spring, in cold blood, and unprovoked, murdered all the relations of Logan, not even sparing my women and children. There runs not a drop of my blood in the veins of any living creature. This called on me for revenge. I have sought it: I have killed many: I have fully glutted my vengeance: for my country I rejoice at the beams of peace. But do not harbour a thought that mine is the joy of fear. Logan never felt fear. He will not turn on his heel to save his life. Who is there to mourn for Logan?--Not one."



Got a picture of my GGGGG Grandfather, Shikellamy:

Looking mighty dark for a Frenchman, lol! And a pic of a bronze statue.

And Chief Logan. my GGGG Uncle:

Never been related before to peeps as had statues made of 'em. . . .

"AIDS Ribbon Chair," 2000
Michael Ransom
carved wood with paint, 4.5" x 4" x 4"

Jobs I'd rather not do. . . .

hattip to Tanya

Wednesday, November 23, 2011 8:37 PM, EST

So much to tell.....

1. Ally can read!!! She has been sounding out 3 letter words for the past couple of weeks! It is so much fun, and she is so proud of herself.
2. Ally has a loose tooth! We are very excited for the tooth fairy. We have found out that Ally's tooth fairy brings trinkets, not money....who knew? We are wondering what would happen if her tooth fell out on Christmas Eve? Would Santa and the Tooth Fairy work together? I guess we will just have to wait and see.
3. Ally is HAMA positive (grrrrr), BUT she is only slightly HAMA positive. We are going to draw again next Thursday and see if she is still positive. She is really close to being negative, so they hope she will drop quickly. We hope so too.
4. Ally is due for scans again in January. Our DHMC doctors are working on having Ally do the CT and the MIBG awake. Ally did the CT awake last time, no problem. The CT only takes 5 minutes or so. The MIBG is 45 minutes of Ally laying very, very still. One of us will be able to be in the room with her for both scans. Hopefully this will all go well.
5. Sadly we had to leave Ally's medical supply company this week. Since Ally has been diagnosed we have been using a company called New England Life Care for all of her at home medical supplies (for her port and her feeding tube, and lots of various things over the past few years). My school switched insurance companies, and NELC can no longer service us. It seems silly to be upset about a switch in company, but this company has been fantastic. Because of them we have been able to leave the hospital a day early on more than one occasion. They are local (right here in Concord) and they have been able to get us supplies the day they are ordered. When Ally had to have her low dose chemo after the tumor came back, this was the company that came to our house everyday for 2 weeks on, 1 week off, for 11 or 12 cycles. They have been great and we will miss the local company.

Happy Thanksgiving. This year we are thankful for Ally....she is pretty awesome.

The Tipping Point

. . . . . . .Triggered by a radio question (on Talk Of The Nation

or On Point?)

. . . . . . .which was "Who won't be at your Thanksgiving table this year?"

ghosts began appearing in my head

since no one is actually gone

til they disappear from all memory and these are shared;

perhaps more at that table than this, maybe not,

now as I travel a path ever closer to theirs.

The tipping point when you have known more than you now know.

With thanks for all with whom bread has been broken over prayer.

With thanks for all present the love to share.

Family and friends savored, just as the food.

and thanks to all who brought us to this point

ghosts of Thanksgiving past invited too.

By Phil Specht on Nov 24, 2011

Kennebunker

Results of the doctor's appt. Thursday. They're kicking me up a rung. Because they don't do any of the things that would possibly ameliorate it. They *could* have done that while I was still in the hospital. . . .

Won't prescribe any of the available meds that would help open the LES, because, "there haven't been enough studies." How many studies are they going to *find* on a 1/100,000 condition?

Next step: University of Virgina Teaching Hospital. Which is a HUGE step up. I'm very happy about this. Downside, it's going to take TWO WEEKS to *arrange an appointment.*

Crickets.

Absent from my own life for some time

I knew, somewhat. Things not quite

matching. Stitches dropped. Vague sense

that something needed doing, but what that

something was escaped like mist.

Never quite enough energy to get entirely

through a day, in tact.

Waves building for years, rising,

and finally like those deep blue in a Japanese print

breaking white against cliff and sky

A matter of simple mineral

When the deficit is too large

the electrons don't fire clear

across the gap, but fall

and you follow

This is what starvation is:

phenomenal, not imaginary

I'm not back yet

but am beginning

to delineate where I've been

skry scri scry?

jjl

21 October 2011

Tuesday, November 8, 2011 7:57 PM, EST



We are back into the swing of things.

Ally had her morning dance class on Monday, and she had enough energy to make it to school in the afternoon. Today she did take a short nap at Grammy's house (Ally has been nap free since the beginning of summer), and with the time change has been ready for bed extra early this week.

A cute story Ally has: Monty (our cat) is very brave, even braver than her (Ally), because when Monty gets her shots at the vet no one has to hold her paw, but when Ally needs her shots Mommy has to hold her hand, so Monty is the bravest. I told Ally I thought she was pretty brave too.

Thanks to all of our Veterans, who make this country great, and allow us to travel freely to get Ally the medical help she needs.

There would be a space then
where we meet,
that neither of us owns

I'll give you my part,
And look for you,
again,
just over the crest
or perhaps around the bend

Standing in the deep green
dappled and invisible
and always present



jjl
20 October 2011

Saturday, November 5, 2011 10:13 AM, EDT

We are on the train ride home...and they now have wi fi!

Last night Ally had a great night. She "snapped out of it" around 6:00, just in time to have salad, french fries and cheese cake for dinner. We even got some time in the playroom at The Ronald. Last night the New York Rangers Game Room at The Ronald was unveiled. There were even some retired players (I have no idea who, as neither of us really follow hockey) for the event. It is a pretty cool room, set up with at least 2 X-Box Kinects and a bunch of other media for the kids to play with. Ally had no interest, but on our next trip it might be fun for Mommy and Daddy to play! By 8:00 she was ready for bed.

We are already slated to head back for the next round of 3f8 in January (as long as Ally is HAMA negative).

The medical world of Ally's cancer treatment has always been part of her world, since before she can remember. She just assumes it is normal; however she has started to ask questions. She asked me if I have ever had a Mic-Key button, and also, if I had to do 3f8 when I was little. When I tell her Daddy and I never had to do those things she gets quiet for a bit, then changes the subject. I wonder what she is thinking.

We are getting closer to home, and looking forward to the rest of the weekend to just relax and sleep in our own beds with our own pillows.

Thanks for sticking with us this week...

Fear. Friend. Come.

Let us see what must be done.
See if it can be born,
and if not,
what then

No use to weep and wail
that the way's too hard
It is, and nothing more

Find solace where it can be found to hand:
Sound of leaves cartwheeling in the wind
Rain on sky windows
A little warmth when needed
A little flavor on the tongue
Will have to do

Make space, mark time:
there are still those who need you




jjl
20 October 2011

Friday, November 4, 2011 12:14 PM, EDT

Today went much better. 20 minutes of pain, well controlled by the meds. We are just waiting to be unhooked, and then headed back to The Ronald. We have a 9:00 train home in the morning.

Thursday, November 3, 2011 3:24 PM, EDT

Here is a picture of Ally with Linny, the Wonder Pet. We were just hanging out before the 3f8 this morning.

Ally has been having a hard time snapping out of it this week. The medical professionals thought we might be over-medicating her, because it has been so long since her last treatment and the narcotics are too strong for her to fight off. So, last night, following doctor's orders, we took Ally's pain patch off, and did not replace for today. As Ally was experiencing a whole new level of pain today I was kicking myself in the ass. Luckily it only lasted for 20 minutes, but even the nurse was concerned with the level of pain Ally was experiencing. We have decided not to put another patch on her, as it carries it's own set of complications, instead we are going to up her "rescue" meds for tomorrow. Hopefully that will take care of everything. Lesson learned, too bad it was Ally who had to bear the brunt of it. (We are not upset with anyone. We talked a lot about using the patch or not using the patch, and thought that taking the patch off was the best course of action. Sadly it was not, but we have a new plan for tomorrow that we are happy with.)

Ally is resting comfortably on Daddy's bed right now. We have another dinner, here, at The Ronald tonight, and tomorrow is the LAST DAY!!!

Home


Staggering, tipsy, frail.
Watch the floor, which may
rise up to meet you.

Or you may trip
on a shadow.
Or dream.

Slow. Go slow. Think.
Plan.

Hold on to things,
don't attempt the big spans.
Be patient.

World glossy, metallic, transparent.

Need to find the magic
again. The hunger.

Negotiation as a way.
Of life?



jjl
19 October 2011

Wednesday, November 2, 2011 11:14 AM, EDT

Here is a picture of Ally’s pump...the little syringe, up in the corner is her 3f8.


Unjinx....(just because we are still at the hospital and I don't want to mess up a good thing)

Today was better. 20 minutes of pain, and no oxygen needed yet!

Ally never really snapped out of it last night, we are hoping she will tonight. We did manage to get her down to dinner, but she ate only a few bites of salad and brownie.

It is really nice to have both of us down here for this round. This is Ally's 5th round and our first time as a family in NYC since her surgery in January 2009. Everything is easier with both of us here.

We get a new roommate each day. The first day was an older (teenage) patient who was getting chemo I think. Yesterday we had a super cutie who was getting the new humanized 3f8. This little girl and her mom popped over to our side to give us some hand sewn bags to put Ally's ice packs in, so they are softer up against her. They are super cute. Today we have another cutie pie getting regular 3f8.

That's all for now....what a strange feeling, to be in a better mood because my kid only had 20 minutes of intense pain today....cancer treatment sucks.

Tuesday, November 1, 2011 12:11 PM, EDT

Last night Ally slept straight through. One of the side effects of the 3f8, is that it makes it hard for the kids to pee. Ally peed around 11:00 AM yesterday, and then again around 7:00 AM today. Hopefully that won't happen again. We did have to give her some meds at The Ronald last night, as she had a little hitch in her breathing. After that she slept wonderfully. Because Ally was so out of it last night we missed the Halloween Gala the Ronald McDonald house held. The poster said it was at a fancy ballroom somewhere on Park Avenue, and the the cast of Wicked was going to perform. We wish Ally had been feeling better, because that would have been AWESOME! Oh well. Before the 3f8 yesterday we did get to trick or treat around the hospital. Ally got a bag full of candy. The playroom had at least 100 costumes the kids could choose from, we actually brought Ally's costume from home (bee), but they let her pick out some accessories to make her "Her Royal Highness, The Bee" she had a fun time.

Anyway...today's treatment went much smoother. Ally did have pain for 45 minutes (which seems like FOREVER, when your child is writhing in pain), but no scary hallucinations, or jerking body. Her heart rate did drop to the 80s and 90s. Usually her heart races in the 170s/180s, and we need to wait for it to calm down before we are allowed to leave. Currently she is up in the 150s, which strangely enough makes me feel a lot better than the lower heart rate. We will probably hang out at the hospital until 1:30 or 2:00, and then head back to The Ronald. Hopefully Ally will snap out of it in time for the dinner that is being provided for us. She is VERY excited about the dinner!

That's all for now....oh yeah, the meds also make her lips swell, we have our own Angelina Jolie. Enjoy the remaining snow up there in the Northeast...

The Gift


Late morning,
promises kept,
the establishment
allows a bath
Brings towels
and soap

The needles
all pulled out

Door closed
And sitting
(wisely)
The hot water
runs and runs
as fingers seek and peel
the hot black snaps
no longer hooked to
the heart monitor
And snaps from earlier
investigations
Three sets in all

Bubbles
heat
steam
warmth
freedom
beauty
joy
All you ever wanted.

Dry my hair
which glows like a fizzy white halo,
don my jeans and pink sweater
(I might be human after all)
put on my lemongrass sandals
And when they allow me gone
they let me walk to the door
And wave goodbye

Leaving me only how to find
this new life
the one they gave me back
which doesn't much resemble
the one I had before


jjl
19 October 2011

Ruth Beckel



Untethered at last
Not one thing they can think
to push into either arm, wrist

I keep the needles, just in case,
Dangling like a bracelet
jangle bangle
but dance away from the bed
Close the bathroom door

Carefully explore:
my uprightness
my balance
my gait

Barefooted, hit the hall
Stroll softly to the end
and watch the old lady in the window
head wreathed in stars
No one I've ever known
now no way to deny
she's been there all along

Not ready for a polka yet
I do a bounce and a quick
small soft shoe shuffle holding onto
the end of the bed.

And clean the room,
and sort my clothes
and drink the smuggled Mountain Dew.
Pack my going away bag.

Smug. No way around it:
Just plain smug.





jjl
19 October 2011

Monday, October 31, 2011 2:10PM EDT

Today was scary...and not because of the holiday.

During the painful part of 3f8 Ally started hallucinating. She had crazy, wild eyes and kept saying she was scared of the beeping pump. There were no pumps beeping in the area. She even seized (or at least what felt like some mini seizures while I held her in my arms). She was able to refocus her eyes when we asked, but the whole thing was horrible. Even the nurse who was with us said it was scary for her. Ally is currently "sleeping it off" and seems ok. We are still at the hospital. I will try to update again tonight, with the better parts of our day.

Thanks for thinking about us today.

Sunday, October 30, 2011 6:50 PM, EDT

Let's call this one: Ally Rocks Again!!!

We are here in NYC. Our day began last night with the snow. Ally was very excited about the snow and the trip. We are pretty sure she did not get to sleep until around 11:00. The electricity kept going out throughout the night, and each time it woke Ally up; I think we all got about 4 hours of sleep. We woke up at 5:30 this morning, and by 5:50 Daddy was shoveling the foot+ of heavy, wet snow. By 6:20 Ally had taken her shot (which she is doing awesome with) and we were on the road with Grammy and Grampa. The drive to South Station was slow going, but we got there. Then we waited, and waited and waited. Our train was supposed to leave at 8:40. By 10:15, they told us trees were down in Connecticut and they were not sure they would even be able to run the trains today. Daddy went up to the bus station and got us 3 tickets for the 11:00 bus to China Town. Of course there was an accident on the highway, so we didn't get to the city until 3:45. We had some trouble finding a taxi, but we were able to make it to the Ronald McDonald House by 4:15. It was a long day, and Ally rocked it out. She napped a bit on the bus, was VERY excited as we started to pull into the city, and took the whole 3 hours at South Station pretty well. Even though we were starving (as we had only had breakfast) we let Ally play for a bit, and then headed out for some food. Ally and Daddy are currently making tiaras, and we are going to head down to the dinner that is being provided soon, so we can get dessert.

Tomorrow we need to be at the hospital for 7:45 AM. I'll update tomorrow afternoon or evening about how the day went.

You


The door buzzes, bangs back
wheeled through
the heavy steel doors
to help at last

How could that not bring you back?
How many times we played that game.
How many hours in bland beige rooms
waiting for those doors to open
waiting for that fifteen minutes
waiting for something like information
waiting for a decision
waiting

Finding back ways in,
sitting quietly, holding
your hand, praying
or something like it

And when the rules
don't apply
No visiting hours
just go on in
And would you like us
to call the Chaplain?

And the cold
Until at four in the dark
some sweet unseen angel
drapes a warm blanket around
my shoulders, your fingers
turning black with cold
between mine

Sometimes during the long
sleepless nights
I felt you, gently
curl up around me
offer me your presence
touch
love




jjl
18 October 2011

Pain

They ask endlessly.
How much? From one to ten.
Ten, worst ever.

If you've known ten
then nothing on their scale computes
You must be mute

Most of a lifetime ago,
watching my father turn blue with pain
refuse help

The old question:
bearing pain well equals virtue?
And why?

In the waiting room hoping for help
Children running and laughing
Hours drag by

The witness leaves
Fear rises
But fear is not pain. Is it?

Terror will not kill you.
Will it?

No subtle questions here.


jjl
18 October 2011

At four, morning,
a young hippie,
past perfect, arrives to read
my wristband
Real not memory.

So who was born on September 18, 1940?
Catharine the Great.
And Mary Queen of Scots.
And Lauren Bacall.

A great day to be born then?
'Twas. Indeed.

The needle slips in, painless
for once. He steals away
with four bright bands of garnet
sparkling in the dark and quiet
halls.



jjl
18 October 2011

Takes weeks to make poems
out of pain and fear and hunger and thirst

Everything steeps

The unimportant seeps away

Two nurses getting married within the month
Sparkles on fingers
One asks: What makes it last?
You answer, LOVE. And add, kindness.
Such a wistful smile.

The one who's wife to a dairy farmer
who takes blood wonderfully
saying, people are easier than cows
Who borned all but her first
at home:
Also easier than cows.

Meds in the early ayEm. Your name?
Susan Sarandon.
Laughter sounds so good at two O'Dark.

Saturday, four days without food/water
How fine applejuice tastes!
Jello!!
Day five! Puree: chicken, carrots and potatoes
No Thanksgiving ever better.
The last day, you ask for take-home
and the perky aid, white shirt/black pants and apron
brings black foam boxes. You say how good she looks;
she smiles: Some say too good! Like waiters.
True. But isn't that's what is wanted?
A red carnation would be nice.

The front spaces, foyer, halls, rooms
very like a mall. Upscale at that. What visitors see.
One could pray not to see the rest.
Or one could. And be glad.



jjl
17 October 2011

Kind men and women

The doctors wear white coats
of armor, not to be confused
with those who wash you and
steal your vital signs

Though everyone listens to your
lungs
heart
Or what they can find, hear, fear
And check your ankles

The movements in your gut
as well attended to as your mother
did when you were two

It's hard for them to tell you why,
though what is easy. You have to ask, and even
then they stumble a bit ~~
You have no uniform, no key
Your bum hangs out --
You have no dignity

Occasionally one. Brought
in from a back yard bar-B-Q, yellow shirt
black lead apron, going about biz.
Too bad I can't see.
He swings the screen in front of me.

Oh, dear!
You've seen that bird, then?
Oh, yes. But I thought it belonged to someone else.
Internet, eh? and laughter. That laugh keeps me
through the next five days.

A doctor in a yellow Izod shirt.
Imagine that.


jjl
17 October 2011

Hospital, Afternoon


You sit, wrinkled in the bed
trying not to clutch at the tubes
feeding you pain

In fairness, they asked
explained the good cause
You agreed

From noon, minute to minute
hour after hour
the desert of pain stretches
waterless, withering, bitter, burning

And weep, though you wish to howl
howling would upset the sweet keepers
who worry about you

Burning salt sand
leaks from eyes
nose, misery blocked

Holding on for life to the
softest bear in the world
gift of the softest heart

At four, they call it off
and go home
Reason vanished

Tomorrow's good enough,
after all



jjl
17 October 2011

When the bone man comes
He brings a mirror

You recognize the likeness
kinship

He doesn't exactly ask
if you're ready
yet

A whisper like the dry rustle
of autumn, leaves

The question hangs between
you

From spring into summer
summer into fall
the girl falters
the crone takes over

At night, after dark
under covers,
the fingers explore
caverns under the ribs
cradle of hipbone
hills and valleys of the spine
knobs of wrist and knee

Flesh fled, face collapses
everything woman about you
going and gone

Almost ready bone man
almost

Come again soon, tea's
nearly on the table




jjl
17 October 2011

Saturday, October 8, 2011 7:02 PM, EDT

We are all set to go to New York on October 30th. Mommy, Daddy and Ally are all going! Ally is actually excited about the trip...even though she remembers what happens at the hospital...we are very lucky that she has such a positive attitude.

The Wednesday before we leave we have to start injecting Ally in the leg. In the past she has been really good about getting her shots. However, the past 2 rounds have caused her legs to have nasty allergic reactions. The injection site gets very red, swollen and hard. We will be giving her benadryl around the clock, which will make for a sleepy Ally.

We have also convinced our neighbors to open their trick or treat doors on Friday, the 28th. We are hoping our friend Max can join us (it is just 3 or 4 houses). We will also bring Ally's costume to NYC with us.

We are still trying to help Ally gain the weight back that she lost when she was sick. It is very hard for her to eat a large quantity (although tonight she ate an entire avocado, a serving of egg noodles with parmesan cheese, a slice of turkey, a cup of Kool-Aid, and a bowl of popcorn....VERY unusual night for her, but hopefully it will become more common). We have a sticker chart to help motivate her.

Last night we went to a local theater and saw Jungle Jack Hannah. Ally LOVED the animals he brought (her favorite was the penguin) and she loved staying up way past her bed time. We have also gone apple picking, a quick trip to Canobie Lake Park, and Ally is still loving school.

That's all the news for now. I'll update again when we get to the Upper East Side!

Grateful for 8 hours of uninterrupted sleep!

Slept from two to ten, solid. No one woke me at 2:10 to take blood. No one woke me at three to add a new drip or two to the IV. No one woke me at four to find a new IV site because the old one shut down and/or they needed two IV sites at all times. No one woke me at four to take vital signs. No one woke me at 4:30 to take blood. No one woke me at five to weigh me. No one woke me at six to give me a heparin shot. No one woke me at seven to introduce themselves and ask if I wanted a bath or a change of linen. No one woke me at eight to give me a vitamin B1 pill, four vitamin D pills, and half a blood pressure pill. No one woke me at 8:30 to offer me puree cream of wheat, puree scrambled eggs and jello. No one woke me at nine to ask me the last time I had a bowel movement. No one woke me a nine thirty to ask me if I had a history of high blood pressure. No one woke me at nine forty five to ask me what I felt like when I decided to come in to ER.

How to have fun during hospital stays. . . .

Evidently because of some highly publicized incidents of medical screw ups, it is now vital to check who you are before giving medications, or drawing blood, or letting you have a test or procedure. As a consequence, you are asked upwards of fifty times a day to tell them your name and birthday.

Everyone's bored out of their skulls doing this. You are. They are.

Day three, someone asked who I was, and I said Susan Sarandon. Made her outright laugh. As for myself, that first time it was totally unplanned. Then I started working on it.

One two a.m. blood draw, the young man asked me whose birthday was on September 18, 1940. I said Catharine the Great. Also, Mary Queen of Scots. And Lauren Bacall. He said, "Well then, it must be a good day to have been born," And we both laughed, and I disclosed my *real* name. And protocol was kept.

In five days, I passed not only as Catharine the Great, Mary Queen of Scots, and Lauren Bacall, but as Monika Lewinsky, Goldie Hawn, Sophia Lauren, Barbara Bush, Jack the Ripper (after a *really* long, painful afternoon), and Hillary Clinton. There were others, but I forget.

Also, there's the "alert and oriented" drill. . . . Do you know what day it is? Who is president? If you say it's 1999, and Clinton is President, you pass. And two people grin. . . .

Thursday, September 29, 2011 5:36 PM, EDT


We have lots of good news!

First: Ally's bone marrows are clear!!

Second: Ally is HAMA negative!!! They want us to be in NYC on October 31st for 3f8. We really wanted Ally to be able to trick or treat in Concord, so we asked if we could go the week after. We are still waiting to hear back. (It might seem silly to push it back a week just for Halloween, but some of you may remember we had to be in NYC for Halloween last year, and Ally missed trick or treating...except for some REALLY nice neighbors who let her come early, she is very excited for Halloween this year, so we thought...we have already waited 6 months for 3f8, what is one more week?) As soon as we have more details I will post again.

We have heard back: Ally has to be in NYC for Hallowe’en. :-( So, we are thinking of having a costume party before we go.

ftogrf

Thursday, September 22, 2011 6:03 PM, EDT

Ally’s MIBG (scan) is CLEAR!!!

We need to wait until next week to hear about bone marrows.

Ally is still HAMA positive. Our NH oncologist is contacting our NY oncologist to see if we will do Accutane again or Rituximab again. Hopefully we will know early next week.

Thanks for all your thoughts and prayers.

We are having pizza to celebrate! (Ally does not actually like pizza, so she will be eating just the crust.)

September is Childhood Cancer Awareness Month. Spread the word that childhood cancer stinks and needs more funding!

Speaking of funding...check out bandofparents: http://www.bandofparents.org/ to see some exciting news about a humanized form of 3f8: http://www.bandofparents.org/treatment_a/155.htm. I believe all of the funding came through fund-raising. Click on "news & events".

This is the future of cancer treatment, and we need all the help we can get!

Tuesday, September 20, 2011 6:31 PM, EDT


CLEAR CT SCAN!!!!

Yeah!

Tomorrow Ally will get her MIBG injection and have a blood draw.

Thursday Ally will have her MIBG scan and bone marrows pulled.

Friday Ally will go to school!

Monday, September 19, 2011 11:03 AM, EDT

SUCCESS

Ally did it!!!!

She was able to make it through the CT scan awake!!!

We are not sure when we will get results from this scan.

On Wednesday she will have her MIBG injection and on Thursday she will have that scan (under anesthesia) as well as bone marrow samples.

observing

Friday, September 16, 2011 6:56 PM, EDT

Ally has a CT scan on Monday. We are going to try it without anaesthesia this time. The anaesthesiologist will be on stand-by, in case Ally freaks out, but hopefully she will be fine. Our understanding is that Daddy will be able to sit next to her. This is a huge step forward for her. Please send out some extra prayers for a calm Ally on Monday (right around 11:00). She will have the rest of her scans on Thursday; prayers needed for those as well.
Sadly, with her scans spread across the week she will miss 2 days (out of 3) of preschool next week. She has only had 2 days so far, and has enjoyed them. She is already interacting with the other kids and is way more outgoing than last year. I think she is going to LOVE this preschool.
With Ally being sick the last couple of weeks, and with starting Accutane, she has lost 2 pounds. She is now back down in the 27 pound range. We are trying very hard again to get her appetite back up, and to get the pounds on her. We have instituted a sticker chart for eating. It is REALLY hard for her. She does not like to eat, and when she does eat, it takes a long time; usually over an hour for dinner. It is frustrating for her and for us.
The Accutane seems to have peaked. Her peely face is looking better, but her lips are a mess. She only seems moody when she is eating, or getting tired. She should finish up this round on Wednesday and then she will get 2 weeks off.
This weekend we have the following activities:
soccer practice
birthday party
apple picking with Max
possible trip to Canobie Lake Park

Please send out those prayers for next week:
Monday: CT without anaesthesia
Wednesday: MIBG injection and HAMA results
Thursday: MIBG scan and Bone Marrow samples

Happy Fall!

A day of remembrance.

The water falls where the towers fell

the names forever in stone still fresh memory

of flesh and blood of loved ones, family even now.

Say them. Global names of all kinds a common thread

they are remembered with love, children almost too young

to feel daddy's hug still feel ours. We taste their tears.

Our nation wraps in self as one.

Strong voices cracked, the solitary sob caught on camera

a public private moment intertwined.

It is alright. You are with friends.

By Phil Specht on September 11, 2011

Sunday, September 11, 2011 6:52 PM, EDT

Last week Ally started to get sick. There has been some throwing up, and a lot of diarrhea. The poor girl. We are not quite sure where this came from, as none of us that watch her are sick, and she really hasn't been anywhere lately. It looks like we are on the tail end of the sickness, and she is doing much better.

This is just in time for her to start Accutane again. Her first dose was on Tuesday. She takes it twice a day for 14 days, and then she gets 14 days off. Her skin is already peeling around her mouth and, her lips are cracked and bleeding a bit. Sadly, it is also messing with her bum. We have noticed a change in her mood as well. She is less tolerant of us being silly with her, and overall is just moody. Nothing we can't handle, and 97% of the time she is her normal self.

On Saturday Ally had her first soccer practice. Mostly she held onto Daddy's hand and watched the other kids play. We will try again next week. (There are only 6 sessions.)

Also on Saturday Ally helped Grammie and Grampa S. celebrate their 40th anniversary! It was a great day.

Tomorrow Ally has her first dance lesson. These lessons will go all the way to May or June (can't remember which).

Wednesday is Ally's first official day of preschool. She and Grammy M. spent an hour there last Friday to get to know the place, but Wednesday Ally will "go it alone" for 3 hours!

On Thursday Ally will have a HAMA draw, so we will have results on September 21st. We really want to get back to New York for another round of 3f8, please pray for a Negative HAMA.

We also have scans coming up the week of September 17th....Lots of prayers needed for clear scans!!!!

Collective memory

We came together

saw the flags went to war.

It had to happen didn't it?

So that was our next great leap as a species?

Form a mob?

Just when we had it together.

So chuck on the blog says wage peace.

wage peace

peace

Makes some sense you know

that voice coming from outside

should have come from the together inside

or it wasn't going to happen

was it. Leopard in our midst

scream the chimps.

By Phil Specht on September 10, 2011

ddublu