Monday, July 18, 2011 4:46 PM, EDT

Ally began Dance Camp today. She required me to stay (for the whole 3 hours), but is ready to do it alone tomorrow. It is very cute to watch. She enjoyed herself quite a bit.

This afternoon I brought Ally to the movies for the first time ever. She is currently telling Daddy all about Winnie the Pooh. It was fun to watch her watch the movie.

On Saturday night we spent the night camping in the Playhouse. It was loads of fun!!!

Next week Ally has Rituximab on Tuesday, and chemo on Wednesday. We are currently waiting to find out when her next HAMA draw is.

Sleep Out in the Playhouse! (Note Oscar the Pig!)

Happy Birthday, Scooter!!

Thursday, July 14, 2011 8:30 AM, EDT

Ally did a fantastic job at the hospital yesterday. Since her episode when she had a reaction to the Rituximab we have been very careful to make sure it doesn't happen again. She has to take an allergy pill at home for 3 days prior to the infusion and then they give her 3-4 meds at the hospital to help keep the allergic reaction away. Then, she finally gets the Rituximab, which takes about 2 hours to get in. We got there around 9:00 and left around 1:00. Ally fought the sleepiness the meds bring on, and did not nap. For the most part she was pleasant, but I think a nap would have done her wonders. For doing such a nice job we took her to the Olive Garden (she LOVES the cheese they put on everything) and got her a new book. We go back for the second part in 2 weeks.

Other than a quick trip to the hospital we have been having a squeaking fantastic summer. We meet up with some friends at the lake once or twice a week, we have painted pottery, we visit the library, we visit the local pool, we meet up with other friends and do fun things with them. And Max is home!!! (He went on a vacation with his Mommy and Daddy...and Ally missed him like crazy!) Next week Ally has dance camp!

Nikongranny

Tuesday, July 5, 2011 2:58 PM, EDT

So, here is the news: Next week we will go to the NH medical center for Rituximab, and then the week of July 25th we will go back for a second dose of Rituximab, the day after that dose she will get some low dose chemo. Ally has had few side effects from this treatment, but she was showing signs of allergic reaction last time (if you recall...massive headache and vomiting), so we are going to pre-med her like crazy.

Swim Lesson News: Last week Ally had issues letting go of my hand for the lesson (I am the ONLY parent in the pool). She is still reluctant to let go of my hand, but one of the lifeguards has been trying like crazy to get her to hold his hand. She held his hand for the first time today...there are only 2 lessons left. This is how I am looking at it: The 18 year old lifeguard does not care that I am in the pool with Ally, the Dad with the little girl who is also reluctant to go in the pool, but will also hold my hand and go in, is thankful for me being in the pool, and it is HOT HOT HOT on the side of the pool....so Ally can be as reluctant as she wants!

That's about it for now. Summer is GREAT! Ally stayed up (until 10:15) for the fireworks last night and loved them. I'll update again when I have more interesting things to write.

Mercantile musings on transformations

Cicada chorus

into an envelope of thirteen year yearnings

drawing all who hear

middle school rousing of adult dreams

song and sex

smartphone app of a million downloads

billboard top forty

By Phil Specht on Jul 3, 2011

Tuesday, June 28, 2011 4:25 PM, EDT
written by Ally’s Mom


Ally is still HAMA positive. I will get more details about our next step tomorrow.

In swim lesson news: Yesterday was Ally's first lesson. On the very first exercise she went under water and the lifeguard had to pluck her out of the water. I then held her hand for the next 15 minutes, at which point her lips were blue and she was too cold to finish the lesson. Today was a much more successful lesson. I held Ally's hand for most of the lesson today, but she let go long enough to grab the lifeguard's hands and jump from the edge of the pool. She did this about 5 or 6 times! She enjoyed today's lesson much more than yesterday's.

As soon as we have a plan for Ally's HAMA I will let you know.

Gullywasher

Friday, June 24, 2011 6:22 PM, EDT

written by Ally’s Mommy

We just got another call from Ally's oncologist...her bone marrows are clean!!!

So, here is a recap of our last couple of weeks:

~Ally had a great year at school. She LOVED going, and is looking forward to going to a new school next year. There is at least one other girl from Ally's preschool going to the new one as well; it will be nice for her to have a friend to start the year off. I am pretty sure her teachers loved having her as well. On her last day Ally came home with a special shell from her teacher, and excellent marks on her report card.

~The day after Ally's last day she came to school with me. It was our field day, family picnic, and clown assembly day! (There was little academics happening that day...shhhhh, don't tell my Superintendent!) Our field day was Alice in Wonderland themed (our PE teacher is AWESOME and put the whole thing together...she even trusted me with the part of the Mad Hatter, in the play). Ally liked it when Mommy was on stage in front of the whole school...it was my acting debut, and I only forgot my lines once, but quickly recovered! Later, Ally was very impressed with the clowns; they were not creepy at all! They were there to promote a circus coming to town in July, we might even try to catch the show!

~Since then we have had some normal days and of course.....CLEAR SCANS!!!

~On Tuesday or Wednesday we will find out if Ally is HAMA positive or negative. If she is negative we will head to NYC in July (probably), if she is positive we will most likely do the Rituximab and Chemo again

~We have recently discovered The Wonder Pets, a cartoon on Nick Jr. Ally is obsessed...it's fun to watch her watch the show.

Wednesday, June 22, 2011 8:16 PM, EDT

written by Ally’s Mommy


Clear Scans!!!

More info/stories to come later in the week!

CalicoBass

SUMMER SOLSTICE, June 21, 1:16 P.M. EDT

Have a wonderful Midsummer's Eve. . . .

7pm Friday, 17 June 2011

Had a super fun day with Ally at my school today...too bad it had to end with a 99.9 temp for her...
hopefully it's just a short thing and we won't end up at the hospital.



Ally’s FIRST ordinary haircut!!

Primelife

Do Not Disturb

Hung on door of gravel bar spawning bed

lure of no interest while above a pair of eagles

tumble in aerobatic wizardry

bigger fish to fry

two little loons on mothers back

father shadowing a drifting boat

too near

Fledgling eaglet solitary on treetop

not sure enough to fly, sensing no danger

no fear

bunny neither I suspect

when hawk gifts lift off to one on shore

lift off into the great circle

all will fly

By Phil Specht on Jun 15, 2011

A Beau and his bear. . . .

Calm, cubed

Puppy comes home. . . .

His name is Buffy (he told me, I swear). He seems to be a Great Pyrenees/Golden Retriever mix. He was a pound puppy rescued from a kill shelter by a good friend of mine in Alabama. Yesterday I drove to Knoxville to pick him up (eight hours down/ten back). She and her hubby drove up from Alabama. He's 4 to 8 months old, and I'm giving him a birthday of 1-1-11, which seems lucky. Which he is. And many many thanks to Bobbye who saved his life, and when he couldn't mix with her other puppies made sure he found someone who loved him as much as she did.

UPDATE: HIS NAME IS BEAU. (BEAUREGARD HEISENBERG.)

Friday, June 10, 2011 3:00 PM, EDT

I spoke with Ally's oncologist (here in NH) earlier this week. She has communicated with the NYC doctors. Here is what I found out: The Rituximab can take up to 3 months to see any results. Ally's next HAMA draw will be at the end of June, and this will mark the 3 month deadline. The plan will be: if she is still HAMA positive we will do Rituximab and Cytoxin (chemo) again, if she is negative we will head to NYC for a week of 3f8. The NYC doctor also said there is new evidence that the Rituximab, in and of itself, MAY help in keeping Neuroblastoma away. As long as scans are clear, I don't care what our treatment plan is....

Speaking of scans, Ally has MIBG injection on June 21, and MIBG scan, CT scan, and Bone Marrow Biopsy on the 22nd. Sadly, the 21st is Ally's last day of school, and she is going to miss it. I feel really horrible about that, but Ally is fine with it, so I will be too.

Now, the fun stuff:
[The photo above is of Ally playing mini golf.]

Ally got her new bed! [See photo below.]

I only have a couple of weeks of school left, and then Ally and I have tons of plans for the summer. She has swim lessons the first 2 weeks of summer, and then dance camp. We also have plans to visit with friends and we are hoping for an overnight trip up to StoryLand.

That's all for now. My next update will probably be about scans, unless something interesting comes up. Have a great couple of weeks!

bikervet

trigirl

Wednesday, June 1, 2011 11:12 AM, EDT

Ally's HAMA came back positive again. Our instructions were to draw blood again in a month. That makes me think her level is still high. I have a call into the doctor to find out if it is at least coming down. Ally being positive is good for our personal calendars (end of school craziness and she has swim lesson the weeks of June 27 and July 4), but we always want to be moving forward with treatment. Plus, scan time is coming around again. I am hoping to schedule them so I don't have to miss the last 2 days or school, or so that Ally doesn't miss swim lessons.....we'll see how that goes.

Other than that Ally has been doing well. She is loving school, and we think we found a good match for her for next year. It is a Montessori preschool, 3 afternoons a week, just a couple minutes from our house (as opposed to the 15 minute drive Grammy and Grampa are currently doing).

We broke out the sprinkler (a wiggly caterpillar) and Ally and our friend Max had a blast the other day. Yesterday her fun time was cut short by a fall on the pavement and scraped knees. The first of the season. Our little Drama Queen was unable to walk for the rest of the night, and required that she be carried....luckily it was close to bedtime.

Upcoming for us: scans, closing out school, swim lessons, dance camp, and a twin sized bed!!!

Lollipop Mouth:

Rescued77

Tiling

Rescued77

sun2

MojaveRainStorm

JEBwebs

Carolyn Donohoe



After an Illness You Become Cautious

After an illness you become cautious,
observing the sage brush buttercups
on the muddy path, grateful for
the clothes line, the washing machine,
knowing you have too many things,
clothes, books, shoes, furniture,
photographs, emails on your computer,
but you cling to them anyway, all the while
hearing Thoreau's voice, “Simplify, simplify,”
and knowing it would free you.

But for what? Just more loss?
You see the tiredness in his eyes
and know yours mirror his and
how much time is left to either of you?
It's like figuring out the monthly budget,
what time you have, what you owe,
waiting for, expecting the emergency
when there's none left. Oh all that
abundance of life and choice you
accepted as if there was no cost.

After an illness you become cautious
like a treasure hunter sifting through
the sandy minutes, dusting off the metal
shards of time together, feeling the light
dapple you as if you were a leopard in
a jungle created for your life, and
you bask in the febrile air, alert
to when you will leap up and pounce
on some ineffable gift that you knew
though distant was always there.

~~ Pat Maslowski

Come the Rapture,

belletrouvaille

blfstik

BEME

*

Hundreds of years before John Denver was she named Mountain Mama by her settlers. . . .

.

Tuesday, May 10, 2011 5:45 PM, EDT

I called NYC today and learned that Ally is HAMA positive. I thought I would be happy about that, because that means we probably won't have to go to NYC until school gets out, so I was surprised when I was disappointed at the news. Moving forward with treatment is always our goal.

We follow other children that we have met in NYC and here in NH. I was recently reading one of my favorite kiddo's post (we have only met him on one trip, but the boy was so positive, full of energy and in love with Ally, that Auntie Kelly and I couldn't help but fall in love with him too). He has had a lot of progression lately, and they are running out of options. In this same post we learned that another little girl, with really awesome parents, passed away over the weekend. There is a lot of bad news in the Neuroblastoma/Cancer world, as of late. Please send out some extra prayers for all the kids.

"I mourn the loss of thousands of precious lives, but I will not rejoice in the death of one, not even an enemy." - Jessica Dovey

http://www.csmonitor.com/Innovation/Horizons/2011/0503/How-Osama-bin-Laden-s-death-sparked-a-fake-Martin-Luther-King-quote

h/t cC at the BBB

Wild woods violets



Woods violets but there on the lawn
behind the depression
of a basement once dug out
where the old house stood, my father born there, inside.
And before air conditioning, my mother after a hot august day
and half a night,labor now in a hospital, brought me home.
Tho I don't remember.



But my father's mother's violets, those I do
because Mother's Day you bring your mother flowers
and my stubby little fingers picked them with care
small child sensing the debt, showing the gratitude
brought them to her, her face in the kitchen window
keeping close watch and wondering, as mothers do
what her boy was up to.



By Phil Specht on May 8, 2011

Evanescence of Pain, Persistence of Joy


Eight months disgorging my guts
in public places;
three with a numb thigh, and heavy
corset in heated weather;
22 and one half hours of labor;
thinking I'd likely not do this again

Waffles on this mother's day morning
Watching him work, sweating a little
muttering under his breath as we
carry a wall back into a small room

Remembering the look of wonder: at one, holding
a dandelion's white head, and blowing --
the flower's children sent forth to the
next greening, growing, flowering

And the one who came after, quick and bright
and hot. Rushing into the split between today
and forever as if there were not midnight, no dawn
Blood and tears, and doing it again and again

Fathers both, now, and I am grown old
mourning what I can no longer persuade
my body to do; things left undone
And the bright nodding heads of their children
dreaming not quite yet of their children

All of us ~~ link after link, move the gears
of time forward. Life seems like this: Stopping in
the middle of the poem to make chicken salad.
And just now the raucous spring song
of a Carolina Wren breaks the peace
with joy



jjl
8 May 2011

After my mother's death, the kids were at the funeral home, writing her obit. Someone was counting words (cost). The first version was something over $800. . . So we cut it back, leaving out accomplishments, activities, etc. Got it under $500. . . More cuts. . . . Still concern about the cost (and how much she'd have hated paying that kind of money). Finally someone (me?) said: if we want a cheap obit, we need to have picked a different mother. . . .

She was one helluva lady, woman, activist, and mom. . . . .

Thursday, May 5, 2011 8:58 PM, EDT (Ally’s Mommy’s 33rd Birthday)

Hello Again!
This morning we attended the annual Make-A-Wish breakfast. It was very moving when we walked in with the other wish families and all the donors stood up and clapped for us. Ally even managed to get 3 balloons! (We passed one along to another soon to be wish kid that lives near Grammie and Grampa Schulte.)

Sadly, today we found out that the City of Concord has cut funding for preschool, so Ally will not be able to attend next year. This is worrysome to me, as it has taken her up until pretty much this past week to be social with the other kids. It was the first time this week that she freely interacted with other kids while waiting to go inside. I am worried that if she has a year off, that Kindergarten will be too overwhelming for her. We are looking into other options, but are very disappointed at this point. Ally LOVES LOVES LOVES her teacher (and Daddy and I are so thankful to her, as we were not even sure school would ever be an option for Ally, and her teacher has made it one of Ally's most positive experiences)....if only the person who made the decision could have met Ally first...she would have changed their mind!

That's all for now. We will find out HAMA results next Tuesday or Wednesday.



Sunday, May 1, 2011 12:42 PM, EDT

Vacation has been great! I asked Ally the other night what her favorite part of Mommy being home all week was, and her response: "Max"
Max is our across the street neighbor. They moved in last fall, but due to Ally's crazy schedule and the feet and feet of snow we did not meet them until this week. Max and Ally quickly became friends. Max turned 2 in January, and has a pretty cool Mommy and Daddy. Ally often looks out the window to see if they are playing outside, and will often wonder what Max is doing when they are not together. They play very well together. I think a wonderful friendship has been made.

On the medical front: Ally gets HAMA drawn on Thursday, and we will find out the results the following Wednesday. If she is HAMA negative we could be in NYC the week of May 15th or May 22nd. Looking back, it was one year ago that Ally first became HAMA positive...I remember freaking out about it then. It is amazing what changes in a year. We always like to move forward with treatment, but then I think: if she is positive this time around, we will draw again in a month, and probably be able to put off the next round until school gets out, then I won't have to take another week off, and I could even end the year with 1-2 sick days left (that hasn't happened since Ally has been sick).

Ok...we are off to take a walk in the wonderful weather, and probably stop for an ice cream! I'll update later in the week about the Make-A-Wish breakfast!

new venison haunch winner

By Phil Specht on May 5, 2011

start with an overnight marinate (Kraft zesty Italian dressing) of cold haunch of venison roast

blacken an onion add some corn niblets on high heat while lightly steaming cauliflower and broccoli flowers

thin slice the venison and then a quick stir fry with all the veggies

melt smokey Swiss and cheddar on top as plated

almost as good as the lunch crowd conversation here

Just thinkin'. . . .

Every single site I use on the internets has a glitch. Some have many. Facebook has some kind of problem with scripts unable to resolve themselves. It can slow my browser for hours without notifying me so I can shut down that tab. It can crash my browser, or freeze my whole machine. HEP has a serious problem posting virtually *anything* takes two or three tries on nearly everything, sometimes 6 or 9 tries. The BBB after you edit takes you to a page, always, that it says doesn't exist. This problem in one form or another is going on three years. Other places change so often that no one can learn to use what features there *are*, give up and leave. One of my dating sites was hacked, which lead to a quick need for everyone (several million people) to get/insert new passwords. Time and the NYT take virtually forever (okay: ten minutes) to even load.

So I'm hoping that *nothing important* evah has to depend on the nets . . . .

We use the beast, make workarounds, adjust, get programs to deal with various glitches, but yanno? It doesn't *REALLY* work well, does it?

Look for you yesterday, here you come today

Today's find: Spring Beauty. And it *is* ~~ Claytonia virginica

Fringed Polygala, Gaywings, Flowering Wintergreen (Polygala paucifolia Willd.)

By Brandee Wenzel

Easily mistaken for an orchid, this bright little jewel is always a delight to stumble across. A member of the Polygalaceae or Milkwort Family, this and fellow species in the genus Polygala produce compounds reputed to increase milk production in nursing mammals. In fact, Polygala is derived from the Latin “poly” meaning “many, much” and “gala” meaning “milk”. Ethnobotanical references to Gaywings were recorded in James Herrick’s 1977 Iroquois Medical Botany, in which the majority of use was indicated for skin inflammations such as abscesses, boils, and sores.

Fringed polygala emerges from creeping, partly underground stems, and is typically no taller than 15 cm (6 inches). Its upper leaves are oval and crowded at the top of the stem, which gives this plant its resemblance to wintergreen. The light pink to deep magenta flowers are made up of five sepals and three petals. The sepals consist of three small outer and two large, showy petal-like “wings”. Of the petals, two are united to form a tubular structure, with the third keeled or boat-shaped petal cresting in a delicate yellow or pink fringe or frill. The keel encloses the reproductive structures, and when a bug lands on the keel, these structures are exposed for pollination. Besides the showy flowers that are insect-pollinated, there are also inconspicuous flowers that are borne underground and which self-fertilize without opening.

Besides Minnesota, gaywings thrive in dry to moist conifer forests from the eastern half of Canada and northeastern United States down to the mountains of Tennessee and Georgia. Its bloom time is spring to early summer. There are over 60 different kinds of Polygala in the United States, with the greatest diversity in the Southeast. Those of us living in the northern United States are fortunate to have an abundance of this wildflower to brighten our woods in the spring.

For More Information: PLANTS Profile - Polygala paucifolia, Fringed Polygala, Gaywings, Flowering Wintergreen

New river bed. . .

Funny. This picture looks so *composed* ~~ I did nothing at all but crop it.

Can someone tell me what this *IS*? Please. (click for full size)

S

Last flood of April. . . . Too much water to see *how much* damage. But there's gonna be a lot. . . .

Wednesday, April 27, 2011 5:21 PM, EDT

Ally had a blood draw today, to check her counts from last week's chemo. She did great! Her white blood cells were around 2.5 (normal person = 5 or 6), her ANC was about 850 (last week it was ~1100, so not a huge drop), and her red cells looked good, her platelets even went up!

We will draw for HAMA next Thursday! It would be a great birthday present for me if she was negative!

We are having a super fun week. Today we made some whoopie pies and delivered a few to Uncle Larry and were surprised to see Uncle Andy and Aunt Deb there! (I wonder if Uncle Larry shared the whoopie pies?) Then, we delivered some to our neighbors, and Daddy is bringing some to work tomorrow.

Since Ally's counts are good enough we are even going to go out and about tomorrow and Friday, then we spend the weekend with Daddy and next week I go back to work (but less than 2 months until Summer Vacation!!!)

Sunday, April 24, 2011 8:35 AM, EDT

Happy Easter!

Ally has been great the past few days. She has had 3 REALLY good nights of sleep (which means Mommy and Daddy have had 3 really good nights of sleep as well), has not had any more puking episodes, and has been full of energy. The only effect of the chemo we are seeing right now is a very low appetite. (We assume her blood counts are low as well, but we have not had a blood draw yet to see how low they actually are.) Today is the first day we are not giving her her anti-nausea medicine, and we are hoping she won't need it.

NOTE! Today (the 25th) is Ally’s parents’ 7th wedding anniversary!!!!!!!