Wednesday, September 29, 2010

Monday, September 27, 2010

Saturday, September 25, 2010

Masked Man in the Moon ~~ Vic1971

Moon rise tonight

shadow of the night

man in the moon ski masked, clouds

north wind, stole summer

By Phil Specht on September 25, 2010

Spent about an hour today watering the new grass. Planted two weeks ago, and 15 minutes of rain since. My spring is dry, so watering the grass consists of throwing a bucket in the river (which is still high enough that one of the five culverts is working), pulling it up, carrying the bucket 25' pouring it into a watering can, and. . . . The grass, with this care every other day is doing just fine. About 15 gallons, one bucket at a time.

Also spent some time harvesting rocks. Anything big enough to help rim the new bed. And one I've been able to loosen, but not yet roll up the incline it's on. It's huge, and will make a fine cornerstone. I *like* rock work. Musta been a stone mason in another life.

This story comes to mind:

When St. Paul's Cathedral, designed by Sir Christopher Wren, was being built, a visitor was shown around. He saw a carpenter at work and asked what he was doing. "Cutting wood," was the reply. Next came a brick layer. "Laying brick." Finally, a stone mason. "Helping Christopher Wren build his cathedral." Something about stone.

And a garden is? A cathedral of flowers.

Friday, September 24, 2010

Friday, September 24, 2010 4:29 PM, EDT

Ally's oncologist was able to see the scans (right after the test was completed)
and called Daddy before they even left the hospital!

Oh Happy Day!!!!!!!

Thursday, September 23, 2010

Thursday, September 23, 2010 5:17 PM, EDT

New York actually called me back!

It turns out we will have to stay into the next week. They are going to schedule a quad bone marrow and a 4 hour urine test on Columbus Day. Every time we have just one (or two) things like this we try to leave in the afternoon. EVERY time it stresses us we are just going to wait to book a train home for Tuesday, October 12. We are going to think of it as a mini vacation. Auntie Lynn (the special guest) and I are going to bring Ally out to see some of the City over the weekend and we will enjoy not being rushed at the end of our journey.

Please pray for tomorrow.
Ally doesn't have her scans until 2:45, which means no eating after 8:00 in the morning. Pray that her tummy doesn't hurt too much, that Daddy will be able to keep her calm, and that the scans are clear!

PS Grammy and Grampa said Ally did a great job at the hospital today.

Thursday, September 23, 2010 9:53 AM, EDT

Surprise, surprise, the NYC office never called me back. So, I called them.

It looks like we are on for 3f8 treatment the week of October 4th. Mommy will be going with Ally, and possibly a special guest will be going with us.

There are about 4 million little details to go along with going to NYC. The biggest of which is scans. Ally gets scans about every 3 months. These include: MIBG, CT, Quad Bone Marrows, and a 4 hour urine. Ally's home oncologists are away at a conference this week, so she is only getting the MIBG and CT. The folks down in NYC are particular about having ALL the scans completed. So, I am now waiting for another call back about those. The urine shouldn't be a problem. I am hoping we can just do that one of the 3f8 days (since we are there for over 4 hours anyway). The Bone Marrow is going to be the tricky one. Even if we went down the Friday before they would not have results for the following week. So, we are hoping that as long as her scans are clear on Friday, they will be able to hold the bone marrow until Columbus Day (and hopefully that is a working holiday). There are about 3,999,999 other little things we have to do, but the urine and bone marrow may mess things up. Please pray that the NYC team will be flexible and empathetic, and that things will work out well. Also we need big prayers for clear scans, the 3f8 treatment means nothing if those scans are not clear!!!

I will be sure to update again when we hear scan results (which may not be until next Monday).

Wednesday, September 22, 2010

Autumn Equinox ~~ September 22, 2010 at 11:09 pm EDT


Wednesday, September 22, 2010 9:32 AM, EDT

HAMA NEGATIVE!!!!! (That is good news!)

More details later.


Monday, September 20, 2010

Sunday, September 19, 2010

And there's more where these came from. . . .

LOL! This is Ally sometime last week “taking care of the squirrel situation.” :-D

Sunday, September 19, 2010 11:18 AM, EDT

Today is Ally's last day of the medication that makes Ally moody!!! (Hopefully forever!) This last round has not been too bad. She has been a little moody, but nothing that is not solved with a little hug and cuddle time.

Our Make-A-Wish event at TGIFridays was super fun. Ally got some special gifts and even got to check out a limo (see photo!).

This week we find out HAMA results on Wednesday. On Thursday Ally gets her MIBG injection. On Friday she has her MIBG scan and CT scan. Please pray she remains NED (No Evidence of Disease). Scan time is always a stressful time for us.

PS: Preschool is going GREAT!!!

Saturday, September 18, 2010

Hi Everyone,

Pepsi Cola is running a campaign called 'Refresh Everything'. Basically what they do is allow different organizations to suggest ideas that need funding. The top two vote getters receive $250,000.00!!! One of the ideas is to find less painful treatments for Neuroblastoma patients. This research would be done at Memorial Sloan Kettering (where Ally is being treated) in New York City.

The link below will bring you to the site where you can sign up and then vote. You can vote twice a day until the end of September. The 'vote' button is in the upper right hand corner. This $$ would go a LONG ways toward helping the cause. Feel free to share this link with anyone you think would like to know about it and participate. Thank you so much for your help and continued prayers for Ally!

Ally’s Grammie & Grampa

Thursday, September 16, 2010

Tuesday, September 14, 2010 4:46 PM, EDT

Our weekend was great! On Saturday we went apple picking and stopped by Ally's school to check out the playground. She loves the sand box there, and it is the size of our backyard! We also visited parks and restaurants. Sunday was a nice relaxing day with nothing to do!

Yesterday Ally spent the day at Grammy and Grampa's house. She had a blast, of course. Today she got to go back to school! She was very excited when she woke up this morning. Of course she already has the sniffles, but hopefully it will not turn into a fever and just stay a runny nose. I actually had a workshop, just up the road from Ally's school, and it let out just in time for me to meet Ally at school! She was surprised!

Ally is currently in her 2nd week of the grumpy medicine, for her 6th and FINAL cycle!!!! Late afternoon preschool, followed by a short nap does not equal a happy Ally, but next week she will be!

Ally has a HAMA draw on Thursday morning. We will get results from that on the 22nd.
On the 23rd Ally gets her port accessed and the MIBG injection. On the 24th she gets a CT and an MIBG scan. Unfortunately 2 of the doctors will be away and the 3rd doctor then has the work of all 3, so we may not hear any results until the following Monday. It will be an excruciatingly long weekend, but we have done those before.

Tomorrow night we are headed to the TGIFriday's near here. They are doing a Make-A-Wish Fundraiser. Ally actually has her picture on a plaque on the wall there!

Wednesday, September 15, 2010

Edwin Newman died today.

Funny, that got me thinking about my relatively brief correspondence with Scotty Reston. He'd taken an Amtrak trip, and had written to customer service about it. Luck of the draw, I got the letter. I didn't know who he was, but the writing was outstanding, and I thanked him, and complimented him on his "picaresque" tale. He was evidently charmed that some no name in customer service knew the word and wrote back to tell me so. We wrote back and forth for several months; me on Amtrak stationery, he, on his own. It wasn't till nearly the end of it that I finally realized who he was. And foolish me, that I didn't steal the correspondence from my employer, who didn't care about it at all. I did. He was a lovely, funny, kind man.

". . . for there is no place
that does not see you. You must change your life."

~~ Rilke

Oh, your life will change. Against your will.
Love leaves
and even the edges of possibility change
The walls around you hung with pictures
Surfaces, holding memory
The floor buckles

Later, in another country
water rises and more is lost
Refugees travel light and lighter

Resettled, digging out yet another
garden, moving rock, making dirt
planting, yes, by the sweat of your brow

The river wall gone now, and terraces and stairways
The very earth moving

Your life will be changed for you
and again

15 September 2010

Tuesday, September 14, 2010

Monday, September 13, 2010

After the Fire

little permanent

sifting through ashes a joy

class ring memories

By Phil Specht on September 13, 2010

Lemon Pear Custard with White Snakeroot

Sunday, September 12, 2010

The deer are fleet, as are the foxes

The elk and trout will live

The future butterflies and moths

The salamanders like starry nights

Will perish

When Eden burns


12 September 2010

Friday, September 10, 2010

Stream Dream

trout rising dimple

insect flight kept short of sky

sprig wings never used

By Phil Specht on September 9, 2010

Thursday, September 09, 2010

27 words

Political Action

We must question why the stillness?

Speak in tongues, field holler.

Witness birth, it is not quiet. Riot.

Get along go along has no sound.

By Phil Specht on September 8, 2010

Wednesday, September 08, 2010

Wednesday, September 8, 2010 5:14 PM, EDT

First day of preschool was GREAT!!!!

Grammy said that Ally gave her and Grampa a big hug and kiss at the classroom door and then went right into the classroom. When they picked her up the teacher said she had a great day. They could see her playing in the sand box, just before it was time to leave and she was having a good time. She made friends with the other small sized girl!

Grammy and Grampa said she looked like she was about to fall asleep on the ride home, but she had so much to tell them she stayed awake for the cross town drive. She had a snack when she got home and then a nap. She was still asleep when I got home from work. We are all so excited for such a good experience. There was a time when we thought she would never make it to school, and here she is, rockin' it like we knew she could!

More good news: The nice, good, professional dentist is not that much more expensive than the evil, bad, rotten dentist, so we are going with them. We have some literature to look at and what not, and they are scheduling out into October/November, so we have a little bit to wait, but we are relieved to be able to use them.

Our next big things coming up:
HAMA blood test next Thursday.
The dreaded scans: within the next 3 weeks, I'll keep you posted about that.

Yeah for Ally, we are so proud of her.

Tuesday, September 07, 2010

Tuesday, September 7, 2010 2:43 PM, EDT

Preschool went well. The first part was all the kids coming in, looking around and playing with all the new toys. Ally made a bee line for the kitchen and was happy there. Then, the teacher went over some things that will be important (parking, snack, using the potty, etc.)
Ally was definitely one of the small ones there. There were a couple other little girls about the same size as Ally, and I noticed one of them just turned 3 a couple of weeks ago...hopefully she will catch up a little bit in her size. She was content to just play next to the other kids, and didn't really talk to any of the kids or the teacher, but she didn't shy away as much as usual. She keeps saying she will talk and will be fine when Grammy drops her off tomorrow.

I spoke to the teacher last week, and set up to meet with her just after the open house to go over a few things. The most pertinent concern being Ally began a medication this week, so her moods are going to be off. What a way to start your first school experience, on a mood altering medication! That's how we roll in the cancer world anyway. We are hoping that the new environment will keep the crazies down.

I didn't take pictures today, because it was just open house, but I am sure Grammy and Grampa will take pictures of her next to the school tomorrow!

The teacher sent us home with homework today. It was a sheet all about Ally. Ally was then confused about homework. She thought you did homework at school, and I tried to explain the difference between homework and schoolwork. Then, she said; "No, homework is at school. Let me show you." She then went, got one of her library books, and opened to a page where the boy says his dog ate his homework. The dog is in the picture, peering into the classroom with homework in his mouth. So, you can see why she was confused, because one of her books put homework at school. What a good little thinker she is!

Overall it looks like Ally is going to love preschool, Mommy, Daddy, Grammy and Grampa will not shed too many tears and Ally will get to be normal for a while. I like it, I like it a lot.

The Ballad of the Shape of Things

Completely round is the perfect pearl the oyster manufactures.
Completely round is the steering wheel that leads to compound fractures.
Completely round is the golden fruit that hangs on the orange tree.
Yes, the circle shape is quite renowned.
'Tis sad to say it can be found in the low-down dirty run around
My true love gave to me. Yes, my true love gave to me.

Completely square was the velvet box he said my ring would be in.
Completely square was the envelope he said farewell to me in.
Completely square was the handkerchief I flourish constantly.
As it dries my eyes of the tears I shed
And blows my nose 'til it turns bright red, for a perfect square is my true love's head.
He will not marry me. No! He will not marry me.

Rectangular was the hotel door, my true love tried to sneak through.
Rectangular was the transom over which I had to peek through.
Rectangular was the hotel room I entered angrily.
Now rectangular was the wooden box
Where lies my love 'neath the golden phlox. They say he died of the chicken pox.
In part, I must agree: one chick too many had he.

Triangular is the piece of pie I eat to ease my sorrow.
Triangular is the hatchet blade I plan to hide tomorrow.
Triangular the relationship which now has ceased to be,
And triangular is the garment thin which fastens on with a safety pin
To a prize I had no wish to win.
It's a lasting memory that my true love gave to me.

~~ Sheldon Harnick

Monday, September 06, 2010

Monday, September 6, 2010 6:54 PM, EDT

Tomorrow is Ally's first day of preschool (it is actually a 1 hour open house with all the kids and families, and then Wednesday she goes it alone)...I think I am way more nervous than her, and I am a school teacher, I know she will be fine! How do normal parents do it?

Ally Joke:
What time is it when an elephant sits on your clock?
Elephant time!
(She came up with that one on her own!)

Thursday, September 02, 2010

Thursday, September 2, 2010 5:23 PM, EDT

Ally is wicked excited that I have gone back to work. She is sooooo happy to be with Grammy and Grampa all day. I am glad she enjoys them so much, and I am so happy we had a wonderful summer together. It was our best summer yet (not hard to beat the past two anyway).

So...Ally's oncologist is very much for getting Ally's teeth capped. We are willing to go through with this plan, but we were not happy with the first dentist (as I posted before), so we got ourselves a second opinion. Daddy brought Ally to the dentist on Tuesday (his day off from working the weekend) and it was wonderful. They were very nice, they complimented Ally, they empathized with our situation, and fully understood it was not our fault. YEAH!!!! So, here is the rub. We have to wait for an estimate for this second place, to see if it is comparable to the first dentist. (Health Insurance does not cover teeth, we already checked into this, they will however cover the
anesthesia and the room, just not the dental work.) The estimating lady at the nice, new dentist had a couple questions about the notes the nice, new dentist took, so we have to wait until next week to get the quote, and see if this dentist (a private practice) is in the same ballpark as the evil dentist.....hopefully they are, so we don't have to go back to them. I will let you know when we have decided what to do!

PS: Starting school on 2 of the hottest days of the summer is NOT a fun way to begin a new school year! But I do enjoy being around other adults!