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