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

Discussion in 'Completed Trip Reports' started by littlewarriorsmom, Jan 27, 2009.

  1. littlewarriorsmom

    littlewarriorsmom Mouseketeer

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    [​IMG] 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!” :joker:

    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 :cheer2: . 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.com/2008/11/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: [​IMG]
    During Treatment:
    [​IMG]

    Right Now:[​IMG]

    CAST OF CHARACTERS
     
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  3. dmbfan

    dmbfan DIS Veteran

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    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!!
     
  4. oklamomof4boys

    oklamomof4boys DIS Veteran

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    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
     
  5. iu97alum

    iu97alum DIS Veteran

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    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!!
     
  6. iu97alum

    iu97alum DIS Veteran

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    Oh and BTW, she is ADORABLE!!!!
     
  7. maroo

    maroo DIS Veteran

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    YEAH!!! :wave2: 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! :)
     
  8. kimmylaj

    kimmylaj DIS Veteran

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    she is cute .. i cant wait to read more
     
  9. tinytreasures

    tinytreasures DIS Veteran

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    Welcome
    I can't wait to hear more about her trip
     
  10. littlewarriorsmom

    littlewarriorsmom Mouseketeer

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    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 ..."

    Right back at you! I loved reading your report.


    :flower3: And thank you to everyone for the warm welcome. I so glad I found these boards and this community! :flower3:
     
  11. TiggerTails57

    TiggerTails57 <font color=green>FIL is still waiting for his My

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    Hope you get your dates soon.....pixiedust:
     
  12. teresajoy

    teresajoy <font color=deeppink>World's Proudest Aunt!<br><fo

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    I'm glad you started a pre-trip report! I hope they get you your dates soon! What a cute little girl you have!
     
  13. littlewarriorsmom

    littlewarriorsmom Mouseketeer

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    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!:cool1:
     
  14. tinytreasures

    tinytreasures DIS Veteran

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    yah for dates :dance3:
     
  15. teresajoy

    teresajoy <font color=deeppink>World's Proudest Aunt!<br><fo

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    OOOH! You've got dates!!! Woo hoo!!! :cool1: :cool1: :cool1:
     
  16. maroo

    maroo DIS Veteran

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    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....:scratchin (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! :)
     
  17. TiggerTails57

    TiggerTails57 <font color=green>FIL is still waiting for his My

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    :cheer2: PARTY!:cheer2:
    Congratulations! great dates............:goodvibes
     
  18. littlewarriorsmom

    littlewarriorsmom Mouseketeer

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    Okay, so last night, we let the kids know that Marenna was getting her wish and that we'd be going to WDW in April.

    I made "Mickey head" pancakes. Couldn't find my squeeze bottle lid, so I used a funnel. Quite the mess, but I got 4 decent looking ones, which we presented to the children.

    "It's Mickey!" they said. But they didn't get that it was the surprise announcement I'd promised.

    So, I began spelling out the letters in pancake batter: A-P-R ...

    "APR?" they asked. "What's that stand for?"

    :rolleyes1

    I - L ...

    "Ahh - prill?" they asked. "Huh?"

    :teacher:

    Finally, they got it. And were quite excited. And then, I got to tell them about the email I received about "The Big Give" ... and then I showed them pictures ...

    They were blown away.

    [​IMG]
     
  19. The Moonk's Mom

    The Moonk's Mom DIS Veteran

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    What a beautiful family! How excitng going in Arpil! It will be here in no time!:cool1:

    Oh...and if you can't find the squeeze bottle lid, next time use a ziploc bag, snip the corner off...and added bonus, when you are done, throw the bag out...no bottle to wash!:thumbsup2
     
  20. littlewarriorsmom

    littlewarriorsmom Mouseketeer

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    GREAT Idea! I'll remember that, thanks!
     
  21. maroo

    maroo DIS Veteran

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    Aw!!!! :lovestruc

    Love the picture!!

    What a great idea! :)

    And The Big Give!!! What an awesome day you guys had! We can't wait to help you plan!! :)
     

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