Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Completed Trip Reports
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





 
 
Thread Tools Rate Thread Display Modes
Old 01-27-2009, 07:54 AM   #1
littlewarriorsmom
Mouseketeer
 
Join Date: Jan 2009
Location: Texas
Posts: 117

Little Warrior Makes a Wish -- Marenna's Pre-Trip Report

We talked to our social worker last October about Make-a-Wish. Right before Christmas we got a call from MAW, but we’re horrible about checking our callnotes for messages, so I didn’t call the rep back until after the holidays. We’ll be checking more often!

Anyway, the two Shannons, our MAW reps, came out at the start of January to meet with Marenna. A few days before, I asked her, “If you could have any wish in the whole world, what would it be?” She said, “To be a grownup!” Not in any sentimental, “I want to grow up someday” way. As in, RIGHT NOW, she wants to be a grownup! Gimme the car keys, Mom! When I explained that they don’t have that kind of power, ooooh, did she cut her eyes at me! Like, “Yeah, they will, you just won’t let them, Mom. You never let me do anything!”

Anyway, once she got past that, she said she wanted to go to Disneyworld. She’s the youngest of four, she’s heard all about Disneyworld, even though we’ve never gone! Plus, in the hospital, other kids talked about it. She especially wants to meet the princesses, no surprise.

Her story: normal birth, happy baby. Right after her first Christmas, when she was 6 months old, she started throwing up yellow bile. Took her in to her pediatrician, who said a stomach flu was going around.

10 days later, she was still vomiting and we noticed that her belly had a bit of a bulge. Well, my eldest, my son, had intussuception (bowel obstruction) when he was about that age, necessitating emergency surgery. Oh no, what if it was that? (We wryly laugh about that now … we wish it had been that!)

Went back to the pedi. She sent us for xrays. Before I even made it home, she called my cell. Said it looked like a tumor and to immediately go to the downtown children’s hospital. Don’t go home first. Well, we wouldn’t make it back home for about 2 ½ weeks.

That night, after xrays and a CT in the ER, they admitted us to the hospital for more tests. When the elevator opened, my husband felt like he had been punched in the gut. “Oncology Floor.”

A surgical biopsy confirmed that she had bilateral Wilms’ Tumor, Stage V. (It’s not worse than stage 4, that’s just what they call it when there are tumors on both kidneys.)

Started chemo. After 6 weeks, we were told the tumors weren’t shrinking, we needed to get the surgery scheduled. They wound up removing an orange-sized tumor from one kidney and a grapefruit-sized from the other. She went from being 17 lbs to 13 lbs. But we were so grateful … the surgeon was able to leave her with ½ of one kidney and 2/3 of the other. Way more than the minimum she needed.

More chemo, for a total of 6 months. Then we were off-treatment! (There were also cardiomyopathy issues in all this, but it resolved.) For solid tumors, they don’t use the term “remission,” they say “N.E.D. – No Evidence of Disease.” Renn was NED for 1 year, 9 months. After a routine scan last spring, her oncologist called me. It was back. A recurrence.

They removed the recurrence surgically, but there was a possible tumor spill, so she needed radiation. That was followed by 6 months of high-powered chemo. Every three weeks, we went in to the hospital to stay either 4 or 6 days for the wonderful/horrible stuff.

She’s been off-treatment since November. Her last scans were then, and they were NED . Her next scans are Feb. 17, then if all goes well, every 3 months.

Her hair is growing back now, eyelashes and eyebrows have rejoined us, and her energy is super. We joke that like the radioactive spider than bit Peter Parker, her radiation and chemo have given her superpowers.

If you go to http://lovethroughaction.blogspot.co...good-news.html you’ll see a video “collage” of this past year.

Oh, and the rest of the kids … Jackson, 12; Kaziah, 9; Lilyanne, 6. And Marenna is 3. Yep, every three years. 2 May birthdays and 2 June birthdays. The only area of my life where I’m organized!

So, bringing it back to where we are now … Renn’s MAW wish has been sent in and we’re just waiting to see if she’ll get it/when it will be.

Last Easter, before re-diagnosis:
During Treatment:


Right Now:

CAST OF CHARACTERS

Last edited by littlewarriorsmom; 02-13-2009 at 10:26 AM. Reason: To add a link
littlewarriorsmom is offline  
Old 01-27-2009, 08:30 AM   #2
dmbfan
DIS Veteran
 
dmbfan's Avatar
 
Join Date: Aug 2006
Location: Massachusetts
Posts: 512

OH WOW, what a sweet heart. Merenna has been thru so much, what a brave little girl. I will be following this story for sure. Have you picked your dates for Disney yet?

Thank you for sharing Marenna with us!!
__________________
Jake's Make-A-Wish Disney Trip 3/09 (alot of pictures)
dmbfan is offline  
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 01-27-2009, 08:40 AM   #3
oklamomof4boys
DIS Veteran
 
Join Date: Apr 2006
Posts: 1,109

I can't wait to find out when your dates will be. Our trip was absolutely magical- I love reliving it through others' trips. Your family is going to have such a wonderful time. GWTW is great at making the entire family feel like royalty!

Carol
__________________


Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
8 cruises and counting- almost Platinum!
Disneyland- over 14 times and counting
oklamomof4boys is offline  
Old 01-27-2009, 08:52 AM   #4
iu97alum
DIS Veteran
 
iu97alum's Avatar
 
Join Date: Jun 2007
Location: Irving, TX
Posts: 573

She is adorable! I read through her cb site yesterday and was completly in awe of what you guys had to go through. Many things are similar with our daughter too. Cancer stinks! I can't wait to hear more!!
__________________
________________________________
Princess Emily's MAW PTR

Me DH DD5 DD3
1/08 VWL
1/09 DCL Wonder






iu97alum is offline  
Old 01-27-2009, 08:56 AM   #5
iu97alum
DIS Veteran
 
iu97alum's Avatar
 
Join Date: Jun 2007
Location: Irving, TX
Posts: 573

Oh and BTW, she is ADORABLE!!!!
__________________
________________________________
Princess Emily's MAW PTR

Me DH DD5 DD3
1/08 VWL
1/09 DCL Wonder






iu97alum is offline  
Old 01-27-2009, 10:19 AM   #6
maroo
DIS Veteran
 
maroo's Avatar
 
Join Date: Aug 2008
Location: MS
Posts: 8,042

YEAH!!! Hi Marenna!

I am so excited that we have another MAW pre-trip report!

I can't wait for you guys to get dates!

I have read through about 1/4 of your Caring Bridge site. You have a wonderful sense of humor about all of this. You made me laugh and cry. You guys have been through so much!

You will love this trip! Welcome to "pre-trippie" land!
maroo is offline  
Old 01-27-2009, 11:59 AM   #7
kimmylaj
DIS Veteran
 
kimmylaj's Avatar
 
Join Date: Feb 2008
Posts: 1,001

she is cute .. i cant wait to read more
__________________
kimmy
kimmylaj is offline  
Old 01-27-2009, 02:59 PM   #8
tinytreasures
DIS Veteran
 
tinytreasures's Avatar
 
Join Date: Oct 2008
Posts: 1,696

Welcome
I can't wait to hear more about her trip
tinytreasures is offline  
Old 01-28-2009, 12:39 PM   #9
littlewarriorsmom
Mouseketeer
 
Join Date: Jan 2009
Location: Texas
Posts: 117

Quote:
Originally Posted by dmbfan View Post
I will be following this story for sure. Have you picked your dates for Disney yet?
We just made it wide-open! Originally, we said anytime except March thinking it would be slammed, but after a DISer gave me the "real" busy times, I emailed our MAW rep to "open up" the start of March as an option. But I have no idea ... March? May? Later?

I feel very lucky in that we don't think we're in any rush. But OTOH, Renn has scans in February and May and I can't help the fear of "but everything could change again." That's the thing with having gone through a recurrence. You can't let yourself feel safe again. It's like "fool me once, shame on you, fool me twice ..."

Quote:
Originally Posted by maroo View Post
YEAH!!! Hi Marenna!

You have a wonderful sense of humor about all of this. You made me laugh and cry.
Right back at you! I loved reading your report.


And thank you to everyone for the warm welcome. I so glad I found these boards and this community!
littlewarriorsmom is offline  
Old 01-29-2009, 09:07 AM   #10
TiggerTails57
FIL is still waiting for his My Little Pony cake
 
TiggerTails57's Avatar
 
Join Date: Jan 2006
Location: Georgia
Posts: 2,070

Hope you get your dates soon.....
TiggerTails57 is offline  
Old 02-01-2009, 12:57 PM   #11
teresajoy
World's Proudest Aunt!
There is no such thing as too young or too old for Disney World!
Thinks glow in the dark ricrak is cool
 
teresajoy's Avatar
 
Join Date: Jan 2001
Location: Michigan
Posts: 6,365

I'm glad you started a pre-trip report! I hope they get you your dates soon! What a cute little girl you have!
__________________
Me&Brian8/88 Lydia11Corey21Arminda15
Quinn2/29/96 &Gavin 2/24/97Gone too soon
/Sort of a trip report PrincessHeirlooms on Ebay/Etsy
teresajoy is offline  
Old 02-10-2009, 05:46 PM   #12
littlewarriorsmom
Mouseketeer
 
Join Date: Jan 2009
Location: Texas
Posts: 117

I'm so excited! It looks like Marenna is getting her wish and we'll be going April 21 - 27. Yay, I get to start making lists and plans!

We haven't told the children yet. If anyone has any fun ways of "telling," let me know!
littlewarriorsmom is offline  
Old 02-10-2009, 08:49 PM   #13
tinytreasures
DIS Veteran
 
tinytreasures's Avatar
 
Join Date: Oct 2008
Posts: 1,696

Quote:
Originally Posted by littlewarriorsmom View Post
I'm so excited! It looks like Marenna is getting her wish and we'll be going April 21 - 27. Yay, I get to start making lists and plans!

We haven't told the children yet. If anyone has any fun ways of "telling," let me know!
yah for dates
tinytreasures is offline  
Old 02-10-2009, 09:32 PM   #14
teresajoy
World's Proudest Aunt!
There is no such thing as too young or too old for Disney World!
Thinks glow in the dark ricrak is cool
 
teresajoy's Avatar
 
Join Date: Jan 2001
Location: Michigan
Posts: 6,365

OOOH! You've got dates!!! Woo hoo!!!
__________________
Me&Brian8/88 Lydia11Corey21Arminda15
Quinn2/29/96 &Gavin 2/24/97Gone too soon
/Sort of a trip report PrincessHeirlooms on Ebay/Etsy
teresajoy is offline  
Old 02-10-2009, 09:35 PM   #15
maroo
DIS Veteran
 
maroo's Avatar
 
Join Date: Aug 2008
Location: MS
Posts: 8,042

Yeah!!!

Dates!!

They do look like GREAT dates! Not too hot...not too cold...not too crowded! Awesome!

Ok...so do they already know they are going and don't know the dates? Or is the whole thing a surprise?

You could have them do a scavenger hunt...

Like unwrap letters and let them spell DISNEY WORLD? But I guess she is not reading yet, is she?

Hmm.... (I have been wanting to use that smiley!)

Whatever you decide to do...make sure it is on video!! THAT would be fun to watch! One of our wish kids got so excited about his and they got video of it...it was classic!
maroo is offline  
 



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 05:58 PM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: