Refreshing Spring

By: crowe1 , 9:40 AM GMT on June 04, 2011

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Spring has sprung, birds are chirping plants are growing, and the temperature is getting hot.
If you have any Spring pictures/stories this is the spot.












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123. Ylee
7:37 AM GMT on July 26, 2012
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!
Member Since: February 3, 2011 Posts: 98 Comments: 16547
122. listenerVT
9:57 PM GMT on July 25, 2012
Came in from the garden to the news:

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


=♥ALLYLUIA!!♥=
Member Since: July 11, 2007 Posts: 0 Comments: 5595
121. listenerVT
2:52 AM GMT on July 25, 2012
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.
Member Since: July 11, 2007 Posts: 0 Comments: 5595
120. listenerVT
5:43 PM GMT on July 06, 2012
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!
Member Since: July 11, 2007 Posts: 0 Comments: 5595
119. overlooked
6:37 PM GMT on June 20, 2012
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...
Member Since: February 16, 2010 Posts: 0 Comments: 21
118. listenerVT
3:54 AM GMT on March 20, 2012
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.
Member Since: July 11, 2007 Posts: 0 Comments: 5595
117. listenerVT
3:52 AM GMT on March 20, 2012


LOL! Here's Ally hamming it up!
Member Since: July 11, 2007 Posts: 0 Comments: 5595
116. listenerVT
3:51 AM GMT on March 20, 2012
*** ♥ 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!
Member Since: July 11, 2007 Posts: 0 Comments: 5595
115. crowe1
1:16 AM GMT on March 15, 2012
I noticed that too!
Sorry I haven't updated in so long, but please continue to post any Ally updates, or anything of interest for that matter.
Member Since: January 26, 2007 Posts: 15 Comments: 922
114. listenerVT
5:02 AM GMT on March 14, 2012
Gosh, Crowe, your post from last year sounds accurate for now!

How are you these days?
Member Since: July 11, 2007 Posts: 0 Comments: 5595
113. crowe1
11:31 PM GMT on March 01, 2012
Glad to hear that Ally and her parents are feeling better!
Member Since: January 26, 2007 Posts: 15 Comments: 922
112. listenerVT
4:23 AM GMT on February 28, 2012
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!
Member Since: July 11, 2007 Posts: 0 Comments: 5595
111. originalLT
5:30 AM GMT on February 25, 2012
Thanks for the up-date, Listener.
Member Since: January 31, 2009 Posts: 0 Comments: 8010
110. listenerVT
1:33 AM GMT on February 25, 2012
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.
Member Since: July 11, 2007 Posts: 0 Comments: 5595
109. listenerVT
4:45 PM GMT on January 13, 2012
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
Member Since: July 11, 2007 Posts: 0 Comments: 5595
108. Zachary Labe
4:38 PM GMT on January 11, 2012
crowe1- I had to laugh at your WWA. A range of 1-6in for snow, lol. Anybody could say that...
Member Since: December 14, 2007 Posts: 285 Comments: 15140
107. Snowmog
2:51 PM GMT on January 10, 2012
Good job Ally! such a cute photo!!
Member Since: February 1, 2009 Posts: 0 Comments: 143
106. listenerVT
2:46 AM GMT on January 07, 2012
☆☆☆☆♡☆☆☆☆ 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!

☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆ ☆
Member Since: July 11, 2007 Posts: 0 Comments: 5595
105. listenerVT
4:06 PM GMT on January 05, 2012
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! :-)
Member Since: July 11, 2007 Posts: 0 Comments: 5595
104. listenerVT
2:21 AM GMT on December 29, 2011
I've found the snow! It's in Vermont on the western slopes of the Green Mountains! We're up to 7" so far...!
Member Since: July 11, 2007 Posts: 0 Comments: 5595
103. crowe1
6:16 PM GMT on December 24, 2011
Thanks, and a very Merry Christmas to you as well Blizz!

Good to see you enjoyed your fist semester at Cornell. The social life will, as you've heard, pick up.

Snow wise I'm in the same boat as most, we had more in October. Nothing more than a .25 dusting since and nothing on the ground now. The hills above 1500' or so around here look to have gotten a few inches last night/this morning.
Member Since: January 26, 2007 Posts: 15 Comments: 922
102. Zachary Labe
5:09 PM GMT on December 24, 2011
crowe1- Merry Christmas! How have you been faring in the snow department this season?
Member Since: December 14, 2007 Posts: 285 Comments: 15140
101. listenerVT
8:09 AM GMT on December 14, 2011
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.
Member Since: July 11, 2007 Posts: 0 Comments: 5595
100. Snowmog
7:22 PM GMT on December 07, 2011
Been catching up on Ally news, I am glad things are going well. The bee costume was so cute! Is she excited for christmas?

It's been so warm here in RI, I wonder when winter will arrive. I hope we get at least one good snow because I got my little one (Tabitha) a sled for christmas, so I hope get to use it!

Happy holidays everyone!
Member Since: February 1, 2009 Posts: 0 Comments: 143
99. listenerVT
6:20 AM GMT on December 05, 2011
Quoting crowe1:
All is well thanks. Even the lack of snow is ok, for now;)
I have warm weather and misty sprinkles.
Can't believe how fast time goes by.
Hope all is well with you and have a safe trip to pick up the Little Princess.
By the way, I think I'll be updating the blog within a week or so.


:-D Since I was able to leave early, I got to pick up Granddaughter about 45 minutes early. We had a blast!

Funny that you mentioned you'll be updating, because when I came over to post I realised it was now officially 6 months since your last post. I'm looking forward to your take on things!
Member Since: July 11, 2007 Posts: 0 Comments: 5595
98. crowe1
12:54 AM GMT on December 03, 2011
All is well thanks. Even the lack of snow is ok, for now;)
I have warm weather and misty sprinkles.
Can't believe how fast time goes by.
Hope all is well with you and have a safe trip to pick up the Little Princess.
By the way, I think I'll be updating the blog within a week or so.
Member Since: January 26, 2007 Posts: 15 Comments: 922
97. listenerVT
5:54 PM GMT on December 02, 2011
Hoping all's going okay with you, Crowe!

I have....

* Snowflakes! *
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96. listenerVT
4:30 AM GMT on November 25, 2011
* * * ♥ ALLY UPDATE! ♥ * * *

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.

Member Since: July 11, 2007 Posts: 0 Comments: 5595
95. listenerVT
4:25 AM GMT on November 25, 2011
Quoting crowe1:
I call 3.3"
Link



H A P P Y ♥ T H A N K S G I V I N G !!!

We didn't get the day of sunshine we were promised by the locals. It was cold, cloudy and spit rain and snow. We still only got a dusting of snow here (Jericho, VT), while one of our guests got 6" of snow! (East Fairfield, VT)

So your prediction was the average! LOL!

But it turns out that a meal cooked by 8+ different family chefs can work and taste great! Amazing!
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94. crowe1
12:32 AM GMT on November 23, 2011
I call 3.3"
Link
Member Since: January 26, 2007 Posts: 15 Comments: 922
93. listenerVT
1:47 PM GMT on November 19, 2011
Hi Crowe!

Snow expected on the day before Thanksgiving when the family is supposed to travel from Maine to Vermont.

How much will be falling and where?
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92. listenerVT
2:13 AM GMT on November 10, 2011
Anybody else have a record high today?


... Record high temperature set at Mount Mansfield VT...

A record high temperature of 58 degrees was set at Mount Mansfield
VT today. This breaks the old record of 54 degrees set in 1996.


I saw 68 on the car thermometer today, while in South Burlington, VT

It's still 58 here in Jericho at the base of Mount Mansfield, at 9pm. The moon was so bright I walked home from dropping off my car to get its snow sneakers put on. So, after that I'll be ready for the shift back to cold.
Member Since: July 11, 2007 Posts: 0 Comments: 5595
91. listenerVT
2:05 AM GMT on November 09, 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.
Member Since: July 11, 2007 Posts: 0 Comments: 5595
90. listenerVT
7:23 AM GMT on November 06, 2011
Quoting crowe1:
Ally is a very smart, strong girl, and her parents seem wonderful as well. She is bound to have questions as she gets older, I'm sure she and her parents will find the answers.


Yeah. Ally will discover that she is not the same as most other children who have not had to endure lots of tests and painful procedures. She may have some anger about that (which would be normal, I should think!). She will also most likely be AMAZED to read through her mother's journal about her life and to talk with her grandparents and others close to the family. She's going to find out how stellar she truly is. We ain't seen nothin' yet. ;-)
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89. crowe1
7:17 PM GMT on November 05, 2011
Ally is a very smart, strong girl, and her parents seem wonderful as well. She is bound to have questions as she gets older, I'm sure she and her parents will find the answers.
Member Since: January 26, 2007 Posts: 15 Comments: 922
88. listenerVT
6:37 PM GMT on November 05, 2011
*** ♥ Ally's on the way home! :-) ♥ ***

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...
Member Since: July 11, 2007 Posts: 0 Comments: 5595
87. listenerVT
6:10 PM GMT on November 04, 2011
Quoting crowe1:


Absolutely, 100%, please continue. Even though some days are hard, she keeps smiling.


Thank you for this, and your note, Crowe. I'll keep posting, then. And I am very grateful for the good vibes, thoughts, prayers and good hopes of the good folks who post here. Moreover, Ally's Mom and Dad are deeply moved by hearing how widely the various communities in our lives hold Ally in all good hope. We kind of think of her as a little rock star.

For those who don't know, Ally is 4 years old and has been fighting Stage IV, high-risk Neuroblastoma since two weeks past her first birthday. They found the cancer at all because the tumor on her stomach was pressing on her aorta, causing high blood pressure. Ally has undergone numerous rounds of chemo including several rounds of superchemo, 20 sessions of radiation, tandem stem cell transplants (from her own stem cells), 2 major operations, and too many scans and smaller procedures to count. Ally went into remission around Thanksgiving of 2008. The tumor returned in February of 2009. She had a second tumor removal surgery in January 2010, and has been in remission ever since. She is currently undergoing 3f8 treatment in New York City. Ally is the only grandchild in her family and it must be added that she got the right parents. Mom is an elementary school teacher and dad works in a medical lab. They have held up admirably through some very harsh experiences, and Ally herself is the most to be admired. She is very upbeat, loving and sweet. Okay, here we go...
~ ~ ~

Here are the last 2 days' messages. The first thing to know is that Ally's treatments for this round are DONE!

~ ~ ~
Thursday, November 3, 2011 3:24 PM, EDT

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!!!

~ ~ ~
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 head back to The Ronald. We have a 9:00 train home in the morning.
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86. crowe1
9:46 AM GMT on November 04, 2011
Quoting listenerVT:
Crowe, please let me know if you still want me to post Ally updates here. Thanks! (Today was better.)


Absolutely, 100%, please continue. Even though some days are hard, she keeps smiling.
Member Since: January 26, 2007 Posts: 15 Comments: 922
85. originalLT
7:42 PM GMT on November 02, 2011
I hope its OK with Crowe1
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84. listenerVT
7:01 PM GMT on November 02, 2011
Crowe, please let me know if you still want me to post Ally updates here. Thanks! (Today was better.)
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83. listenerVT
7:00 PM GMT on November 02, 2011
Quoting TheShovler3:
Haven't gotten a chance to put the photos in the blog but theyre in my photos! check em out


The one of your house would make an amazing Christmas card!

Member Since: July 11, 2007 Posts: 0 Comments: 5595
82. TheShovler3
2:38 AM GMT on November 02, 2011
Haven't gotten a chance to put the photos in the blog but theyre in my photos! check em out
Member Since: December 9, 2005 Posts: 10 Comments: 2579
81. listenerVT
12:49 AM GMT on November 02, 2011
*** ♥ALLY♥ HAD A BETTER DAY! ***

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...
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80. originalLT
8:48 PM GMT on October 31, 2011
Wow, that was scary. I hope she will be OK. On a side note, when I first read the post, I thought her mom said that Ally said, "Im scared of that "bleeping pump". I was thinking, where would she get or know "that" word. Then I re-read the post, and she said "beeping" pump. I hope we'll all be able to laugh about this in the future. LT.
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79. listenerVT
6:31 PM GMT on October 31, 2011
*** ALLY ♥ HALLOWE'EN UPDATE ***

Monday, October 31, 2011 2:10PM EDT

Today was scary...and not because of the holiday.

During the painful part of 3f8 Ally started hallucinating. She had crazy, wild eyes and kept saying she was scared of the beeping pump. There were no pumps beeping in the area. She even seized (or at least what felt like some mini seizures while I held her in my arms). She was able to refocus her eyes when we asked, but the whole thing was horrible. Even the nurse who was with us said it was scary for her. Ally is currently "sleeping it off" and seems ok. We are still at the hospital. I will try to update again tonight, with the better parts of our day.

Thanks for thinking about us today.
Member Since: July 11, 2007 Posts: 0 Comments: 5595
78. listenerVT
3:27 PM GMT on October 31, 2011
Thanks, guys!

And HAPPY HALLOWE'EN!



Member Since: July 11, 2007 Posts: 0 Comments: 5595
77. crowe1
9:40 AM GMT on October 31, 2011
Impressive Shovler, we got maybe .25". Given the circumstances, I'll take the .25", good luck on clean-up.
Member Since: January 26, 2007 Posts: 15 Comments: 922
76. crowe1
9:37 AM GMT on October 31, 2011
Dessert, the most important meal of the day! Glad Ally is so strong, many adults couldn't keep such good spirits!
Member Since: January 26, 2007 Posts: 15 Comments: 922
75. TheShovler3
12:27 AM GMT on October 31, 2011
20.5" of snow Saturday the 29th and 1" on the 27th now power since 6pm the 29th cleanup will take days it's primarily pine, oak and sycamore damage since they retain their leaves longer. I'm glad we lost our leaves early due to heavy rain or this would have been a nightmare!!!
Member Since: December 9, 2005 Posts: 10 Comments: 2579
74. originalLT
12:24 AM GMT on October 31, 2011
Thanks Listener for the up-date. Ally sounds like she is in very good spirits. I've got my "praying shoes" on for her again this week. Looking foreward to a good-no-, super good news up-date! LT
Member Since: January 31, 2009 Posts: 0 Comments: 8010
73. listenerVT
12:10 AM GMT on October 31, 2011
*** ♥ ALLY made it to NYC (for her 3f8 treatments) despite the storm! ♥ ***


Sunday, October 30, 2011 6:50 PM, EDT

Let's call this one: Ally Rocks Again!!!

We are here in NYC.  Our day began last night with the snow.  Ally was very excited about the snow and the trip.  We are pretty sure she did not get to sleep until around 11:00.  The electricity kept going out throughout the night, and each time it woke Ally up; I think we all got about 4 hours of sleep.  We woke up at 5:30 this morning, and by 5:50 Daddy was shoveling the foot+ of heavy, wet snow.  By 6:20 Ally had taken her shot (which she is doing awesome with) and we were on the road with Grammy and Grampa.  The drive to South Station was slow going, but we got there.  Then we waited, and waited and waited.  Our train was supposed to leave at 8:40.  By 10:15, they told us trees were down in Connecticut and they were not sure they would even be able to run the trains today.

Daddy went up to the bus station and got us 3 tickets for the 11:00 bus to China Town.  Of course there was an accident on the highway, so we didn't get to the city until 3:45.  We had some trouble finding a taxi, but we were able to make it to the Ronald McDonald House by 4:15.  It was a long day, and Ally rocked it out.  She napped a bit on the bus, was VERY excited as we started to pull into the city, and took the whole 3 hours at South Station pretty well.  Even though we were starving (as we had only had breakfast) we let Ally play for a bit, and then headed out for some food.  Ally and Daddy are currently making tiaras, and we are going to head down to the dinner that is being provided soon, so we can get dessert.

Tomorrow we need to be at the hospital for 7:45 AM. I'll update tomorrow afternoon or evening about how the day went.


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