Crowe's Weather or Not

Apparently I missed this Ally update, having had company over the weekend (all three granddaughters were here and we put up our tree!)...


Saturday, December 10, 2011 1:32 PM, EST

So it seems Ally's HAMA was not as low as we first thought, or it has gone up. Anyway, she is HAMA positive and we are going to test again on December 29. We will know results on January 4. If she is negative we are tentatively set to be in NYC for the week of January 9th.

In the meantime we have been enjoying some fantastic Christmas activities. Last weekend we attended the Make-A-Wish Christmas Party (which Ally loved!). We have decorated the house, put up our Christmas tree, visited the "Gift of Lights" at the local racetrack and made come crafts. Next weekend we have another Christmas party being put on by the state Childhood Cancer Lifeline.

I will update again when we have more Christmas news to share.

crowe1- Merry Christmas! How have you been faring in the snow department this season?

I've found the snow! It's in Vermont on the western slopes of the Green Mountains! We're up to 7" so far...!

Hi Crowe!

How are you this season? Missing your posts and your presence.



*** {{{ ALLY UPDATE }}} ***


Wednesday, January 4, 2012 10:31 AM, EST

Ally is HAMA positive [which means she has to wait longer to get another round of cancer 3f8 treatments in NYC]. We will draw blood again in a month.

There has also been another change in her schedule. Ally can't have bone marrows pulled on Friday, because they need to be shipped overnight to NYC. So, Ally will do the MIBG scan awake (45-60 minutes) on Friday and we will head up to the hospital early and have bone marrows pulled at 9:30 or 10:30 on Monday, before her other appointment. Tomorrow her CT schedule will remain the same.

~~~

Note from Ally's great aunt listenerVT...
I don't think *I* could hold still for 45-60 minutes for a body scan! Plan A had been for that to happen while Ally was still under anesthesia for the bone marrow test. Since that test got moved to Monday, and they wouldn't want to put a child "under" twice in the same week, she'll have to hold still! She did it once before, so we know it's possible. But it sure is a lot of ask of a 4 year old!! Sure wish they could have moved both tests together.

Thanks for sending Ally and her wonderful parents some good vibes this week! :-)

☆☆☆☆♡☆☆☆☆ ALLY UPDATE! ☆☆☆☆♡☆☆☆☆



Friday, January 6, 2012 6:55 PM, EST


= Clear Scans!!! =

Ally's CT and MIBG are clear! We are still scheduled to pull bone marrows on Monday. We should have those results sometime next week.

On top of clear scans we can also celebrate how awesome Ally behaved. Yesterday was her CT scan. If you have never had one, google it, so you can see the huge machine Ally goes into. It is loud as well. She was very calm, and held her breath when they told her to. The nurse said the images were great, and that Ally did a fantastic job. We were under the impression that today's scan would be about 45 minutes to an hour, as that is how long they tell us it takes when she is under sedation. In actuality it was two, 5 minute scans. Even with the shorter time, we are still very proud of Ally, for laying so still. She stayed very still and the images were clear. She still had to do the day of no eating, just in case she freaked out and needed anesthesia. She didn't need it, didn't complain about being hungry, and got a nice Olive Garden reward! She is our rock-star. What a great way to begin 2012! Thanks for all of your thoughts and prayers these past two days, keep them coming for clear bone marrows!

☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆

Good job Ally! such a cute photo!!

crowe1- I had to laugh at your WWA. A range of 1-6in for snow, lol. Anybody could say that...

Hi Snowmog!

That is a photo of Ally in her Robot costume.
Kids are sooo free and wonderful!

Speaking of which...

Ally's bone marrow test results came back today.
*** ALL CLEAR!!! ***

That means she is still 100% in remission!
That makes two years straight!!!
This lends new meaning to that old quote:
Today is the first day of the rest of your life.

:-D

We're up to about 1.5" of snow so far.


And here's the latest Ally update from Ally's Mom:

Friday, February 24, 2012 7:10 PM, EST

On Wednesday we drew Ally's last HAMA sample. We will find out next Wednesday what the results are. We are hoping to get one more 3f8 treatment in before Ally's protocol runs out.

Ally has been fighting an ear infection for a couple of weeks. She will have a few really good days, then slide back. Her hearing is being effected, and she is down to 26 and a half pounds. Grrrr.

On Tuesday I was diagnosed with a sinus infection, and then on Thursday I am pretty sure I had the norovirus...good news, I think the norovirus wiped out the sinus infection!

Right now daddy is sleeping off a fever.

Our biggest fear at the moment is that Ally will get one of these and then we will have to go to the hospital. I could afford to lose the 8 pounds of water weight on Thursday, but Ally can't.

I'll keep you updated about the current health situation, and about HAMA results. Please keep Ally in your prayers to keep these "everyday" sicknesses at bay.

Thanks for the up-date, Listener.

Just had to tell you that Ally had a double ear infection,
but got an antibiotic and is feeling good again!

And so are her Mom & Dad. :-D


We ended with 8.5" of snow!

Gosh, Crowe, your post from last year sounds accurate for now!

How are you these days?

*** ♥ ALLY UPDATE! ♥ ***

Monday, March 19, 2012 8:29 PM, EDT from Ally's Mom...

I chatted briefly with Ally's NH oncologist today. She has been in contact with Ally's NYC oncologist. He feels stopping all treatment at this point would be acceptable. We are a bit nervous about that, and our NH oncologist understands our feelings. There is a delicate balance we need to perform to keep the neuroblastoma away, but not have horrible side effects or long term issues. So.....Ally is due for scans (now just the MIBG) in April. At that point we will sit down with the NH oncologist and see what our options are.

This week Ally and I are on our own; Daddy is in Texas for training. He will be back on Saturday. We have plans for almost every night this week...yeah!

That's it for now!

LOL! Here's Ally hamming it up!

Bye Bye Winter...whatever you are...

Today's high temperature at Burlington International Airport reached 79 degrees. This is a new record high temperature for March 19th. The previous record high temperature for the date at Burlington was 66 degrees... which was set in 2010.

Today's high temperature at Mount Mansfield was 62 degrees. This is a new record high temperature for March 19th. The previous record high temperature for the date at Mount Mansfield was 50 degrees... which was set in 1968.

Wow! Shows how long I haven't been on here. It's been so long I had to reset the password and all that fun.

Just wondering how Ally is doing now, even tho I noticed that no one has been on for a while. I hope someone will stop in and post an update...

Thanks for asking! Sorry to be so derelict!

Here's the latest Ally Update (from near the end of June) ~


Written Jun 26, 2012 4:45pm

Ally was fantastic in her dance recital. She was very nervous before the show started, but performed fantastically once she reached the stage.

Last week, and this week Ally and her buddy Max have been taking swim lessons at the local pool. The picture above is Ally being a shark, in the game "Sharks and Minnows". Last year I was required (by Ally, not the lifeguards) to be in the pool, holding her hand for EVERY swim lesson. This year I have not needed to be in the pool at all! Ally is enjoying her time in the pool, and is very good at listening to the lifeguards. She is still reluctant to put her face in the water, but I have seen huge gains from last summer! She will finish up swim lessons this week, and then do another 2 weeks at the end of the summer.

The week after the 4th of July we are headed to Story Land! The week after that Ally has Dance Camp with one of her friends. She has a busy, busy summer!

In the midst of all her fun times we need to do another round of scans...I say scans, because she has had scanS for 4 years, but she really only has to do one now, but the phrase "round of scan" doesn't sound right....anyway. Ally will have her MIBG injection on July 24 and the scan on the 25th. I will be sure to post news as soon as I know. Please keep her in your thoughts and prayers on the 25th. (Us too...scanxiety is the worst).

P.S. No more lost teeth! The tooth fairy needed a break!

We need a new thread! :-)


Here's the latest Ally update:

Tuesday, 24 July 2012, 5:30pm

Ally had her MIBG injection today. Tomorrow at 2:00 she is having her scan. Please keep her in your thoughts and prayers for continued N.E.D. (no evidence of disease) status.

I will update as soon as we get home. We are sticking around the hospital for a bit after the scan, so the oncologist can let us know right away.

We have had a fantastic few weeks since my last update. We went to Story Land and Santa's Village. We spent 3 nights up North, with 4 fun days spread over the 2 parks. Ally had a blast. She actually hugged Cinderella this year, and sat on Santa's lap (no picture of that though...because it didn't come out flattering for anyone involved). Ally also completed a week of dance camp, that she LOVED! She was front and center for the mini recital. She is excited to start up regular dance classes in September.

That's it for now...thanks for thinking of us.


Here's a photo of Ally hugging Cinderella.

Came in from the garden to the news:

* * * Clear Scans for Ally!!! * * *


=♥ALLYLUIA!!♥=

Yay! Just wanted you to know that even though I just lurk here(and a lot more folks, too, I suspect), I appreciate all the Ally updates!

I'm so happy for you all!