WEDNESDAY, DECEMBER 03, 2008 06:11 PM, EST

Ally looked good at the clinic today. She weighed about the same as last week, her central line is still in (for at least 2 more weeks) and the doctor said she looked great!

When we were in Boston they told us Ally would be in quarantine for 6 months. They also said we could reevaluate her situation at 3 months (which would be December 9). Well, a call was put out to Boston, and despite how well Ally is doing they are not going to let up on the 6 month mark, so that means Grammie and Grampa, aunties and uncles and all of our friends have to stay away until March 9th. Bummer.

On a positive note Ally is still doing awesome! She is full of energy, she is eating more and different things and she LOVES to carry around Christmas decorations. She also loves to watch the new TV (it is larger than our last one), so we are going to have to curtail our TV watching while Ally is awake.

Have a great weekend!

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

Snowstorm Hunt

circling downwind

my predator self unrevealed to the turkey flock

death sometimes in my left hand sometimes right

you offered your spirit

I would not take it

early doe season

earn a buck

By Phil Specht

to sleep under the cover of leaves

shelter is coming along with breadth

mountains tower our reaches

skies paint our breaches

why clog your dreams

with breaches into

your personal nothingness

growls cant big somethings

i'm here

can't you see

its fortune fortune lasting....

mprov on Dec 1, 2008 1:44 AM EST

It's been a while!
Posted 9:19 p.m. MST

Well, it's been a while huh? Tanner is doing well.

He was in the hospital a few weeks ago. He woke up on a monday morning at 4:30 with a fever, I instantly had the feeling "you need to take him to the E.R." So, I called my amazing parents and my mom came over to watch Austin and Noah, and my dad came with me and Tanner to the hospital. In the ER they did the usual things. Give him an IV, fluids, drew blood for labs and cultures, and started an antibiotic to be on the safe side. We were lucky to have Dr. Jackman there, who I just adore. He was the doc who told us Tanner had cancer back in Feb '06, and has had a place in my heart since then. He, and Tanner's liver doc, both felt uneasy about sending him home. So they admitted him as a precaution. The next morning, when Dr. Book came in to see Tanner she said "It's a good thing you're here!!!!" His blood cultures has grown out Streptococcus Pneumonae, which is what the prevnar/pneumococcal vaccine prevents against. It can become really life threatening really fast. Long story short, even though Tanner has been vaccinated, the chemo wiped out his immunities and he has to start his immunizations all over. He was in the hospital for a week, and came home with a PICC line to continue IV antibiotics.

He's doing much better now, thankfully.

Tomorrow he has a check up with Dr. Book (liver doc). Hopefully all will go well. I expect that they will.

I didn't post over thanksgiving, but was overwhelmed with my gratitude for my children, and so grateful for our liver donor and his/her family, who without, we would be missing a member of our family this year.

I love you all and thank you for caring about Tanner.

Megan

ALLY'S TREATMENTS:

After 6 rounds of "regular" chemo, an almost 10 hour surgery, 2 rounds of super killer chemo, 2 stem cell transplants and 20 sessions of radiation, Ally is in remission.

Ally is now entering the "maintenance" phase of her treatment. She will be on one heavy duty medicine for 6 months, she will continue to take Bactrim and will have at least monthly visits to the NH hospital.


THANKSGIVING DAY, NOVEMBER 27, 2008 08:06 AM, EST

It has started to set in! We were not expecting results yesterday. We thought, with the holiday, the earliest we would hear would be next Tuesday or Wednesday.

It is awesome to be able to say "Ally is in remission!" Plus I can give my 3rd graders an extra spelling word next week!

This is by far our best Thanksgiving yet!

We are still not done with cancer treatment, she still has 6 months of medicine to get through, we are still talking about the central line, she is still in quarantine and she will have to be tested often to see if the cancer is coming back, but for now our baby (toddler) is CANCER FREE!

Here are some of the test results we got back:

(First some background info: chemo turns neuroblastoma to stone. Ally will always have these "stones" in her, but hopefully they will not come back to life.)

CT scan: still shows the cancer stones, but no new ones = good result

Bone Marrow: negative = good result

Hearing Test: in the normal limits, but a slight decrease from previous test = good for now!

Fluoroscopy/Ultrasound: these were tests for her kidneys. She has stage 1 reflux in one of her kidneys = another test in 2 years or so just to keep an eye on it (the oncologist made it seem like this is no big deal)

Echocardiogram: her heart is looking good = GREAT result!

MIBG: NO LIVING CANCER = BEST NEWS EVER!

Happy Thanksgiving! We are so thankful for all this good news and for all of you and all the support you have given us. We are not at the end, but a huge weight has been lifted, and it has not been as heavy because all of you have been helping us carry it. Thank you does not seem big enough for all of you who helped to save Ally's life (because all of your thoughts and prayers helped do that). What can you say to people who saved the most precious thing in the world?

I can't go on. You must go on. Times when the pain is too great and all you wish is for the light to blink out Not to be asked to take one breath more When all they have in store for you is pain and more pain. When the very cells of your body bleed into one another. Anguish will not vanish. Steps forward are taken in invisible increments, too small to measure. And we cannot go on. But do. And somewhere in the howling dark, one switch is switched and then, somehow, another. And yet another. Till, finally, all the man-made monsters can measure is nothing. There is not one cancer cell that has survived. It is Thanksgiving's Eve, and Ally, almost two, has been pronounced cancer free. Nothing ever has been or ever will be larger than this. jjl 26 November 2008

A little prayer of Thanksgiving. . . . .

WEDNESDAY, NOVEMBER 26, 2008 04:18 PM, EST

JOY! JOY! JOY!

The test Ally took today came back:

There is NO living Neuroblastoma in Ally!

She kicked that tumor's butt!

Time to celebrate and give Thanks!!

Gee, and Ally's Grammie Sue hasn't even blown out her candles yet!
Tomorrow will be a very special Thanksgiving Birthday!!

If you like, come by and light some candles in celebration! :-)
http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=ALLYS

TUESDAY, NOVEMBER 25, 2008 04:42 PM, EST

I am not really sure this actually happened today, but this is how I remembered the day going:

Ally sleeps until 7:00AM!!!! (late for her)

We play, nap and eat until noon, when we head for DHMC. Ally is quiet and happy in the back seat the whole way up.

1:30 We arrive for Ally's first appointment. They take us right in, do what they need to do (in about 15 minutes) and then tell us we can hang out in that room until our next appointment at 2:45 with ultrasound. They give ultrasound a call anyway. They tell us they can take us early! We get to ultrasound around 2:00. They are completely finished by 2:30 (15 minutes BEFORE we were even supposed to be there!). I tell them our next appointment is not until 3:30. She calls those people, they say, come on down! So, we head to her last appointment almost an hour early and they take us right in, service Ally with a radioactive injection and we are on our way, out of the hospital before her last appointment was supposed to begin!

Then, we get home to 245 cards from the Mill River community (a town in Vermont one of Daddy's cousins teaches in) (and yes I counted them!). We have not had time to look at all of them, but they are very colorful and all for ALLY!

Tomorrow Ally gets a one hour med infusion, an echocardiogram and an MIBG scan. Tomorrow is a day she will not be able to eat after 7AM. She will go under around 1:00 and should be awake about an hour later.

Life happens.

Not as we would

have it.

Life cums naturally.

A positive

result.

Wash their feet.

Tell them all

is well.

Courtesy of Paine . . . .

There Were Elm Trees Then

There were elm trees then
leaves had fallen
majestic and stark
in the November sky.
The summer innocence
of their shade
hardened by the approaching
winter.

A young boy stood
called to duty
a crossing guard
"ask what you can do"
Stopping cars
as children passed.
In uniform
proud

Palm up white glove
The car stopped
the world stopped
a young boy's dreams
stopped
window rolled down
in the cold
"The President has been shot"

They wore white gloves
that black November
riderless horse
caisson drums slow beat
sticks on rims
the flag on the casket
witness to the young boy
salute

~~ Phil Specht

And Now
. . . . . . . . . . . . . for Sarge


We share a sky. . . .

I woke this morning
A skiff of snow had frosted the whole wild world
and the stars were out
notes of bright laughter
dancing across the blue velvet ballgown

Because
Because
Because
I could feel you coming home
to me



jjl
18 November 2008

TUESDAY, NOVEMBER 18, 2008 05:28 PM, EST

Here are some of the things that Ally's family has accomplished in the past 5 days:

Successfully canceled a credit card after someone used our number to buy a computer in California.

Mysteriously started a car after it would not turn over for 5 minutes.

Did some early Christmas shopping in the form of a new hot water heater.

One of us (Daddy) took an unexpected day off work to be at home for installation of hot water heater.

Took 2 ice cold head showers after new water heater was not hooked up properly. (So we could be semi-presentable at work today.)

Finally took a hot shower!

Forced our kid not to eat for 6 hours so she could have a bunch of tests done.

Is it possible for tomorrow to be normal?