Wendy Gets Her Wish! Make A Wish Trip

Discussion in 'Pre-Trip Reports and Plans' started by Manymosi, Aug 30, 2010.

  1. Manymosi

    Manymosi Wendy got her wish!

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    Let me introduce myself – I am Garry (52) and have been blessed with 12 children with my wife, Kim (51). We have 6 boys and 6 girls. The four oldest (all boys) are married and out of the house. Then we have a girl and boy who are college age and still live at home. They are not eligible for the Wish trip so I won’t give any details on them. That leaves us with:
    Sarah (just turned 18) has been a BIG help taking care of Wendy
    Stephen (16)
    Susanna (13) Wendy’s closest sister and friend
    Wendy (11) Wish child – I’ll explain more later.
    Melissa (9)
    Heather (almost 8).

    About Wendy – She has been diagnosed with Cushing's Syndrome - a very rare condition caused by too much Cortisol, a stress hormone. The most bothersome symptoms are:
    Lack of growth - she hasn’t grown any in the past 3 years or so.
    Red cheeks
    Round puffy face
    Buffalo hump on her back
    General muscle weakness.

    About 95% of Cushing’s is caused by a tumor in the Pituitary gland. After a myriad of tests, scans etc. She was sent to the University of Michigan hospital to have one removed. The surgery was unsuccessful because the ‘Tumor’ was just some benign tissue. She then was able to go to the National Institutes of Health in Bethesda, MD. The NIH is the Federal Government's primary research hospital. Because of the rarity of her condition, she was able to enroll in a clinical study. One of the nicest benefits of the NIH, is that there is no charge for any of the care she receives there (our tax dollars at work!). They even pay for airfare for two people, or pay mileage if we drive, and there is a “hotel” called the Children’s Inn where families of patients can also stay free of charge.

    Back in March Wendy had part of her Pancreas removed to remove a tumor that was found. Unfortunately, this did not cure her Cushing’s because the rest of her Pancreas is infiltrated with a Multi-centric Neuro-Endocrine tumor, which are microscopic ‘Baby’ tumors. These are so rare that the NIH knows of ‘maybe 20 patients with this specific type of tumor, and only a handful of children’. The Doctors have put her on Ketakonozole which has lowered her Cortisol to almost normal levels, but this is only a temporary solution as the Ketakonozole will gradually lose it’s effectiveness. Actually, this week Kim, Wendy, and Sarah are at the NIH for tests, and to see if the tumor has grown at all since March.
    I won’t even go into the many other hospital visits for tests, MRI’s , CT scans, etc. along with a few emergency room visits, and other complications, including a large cyst that formed from fluid leaking from the Pancreas, since March. Throughout all of this Wendy has been a trouper! Yes, she has been frustrated, scared, and discouraged at times, but overall has done incredibly well in handling the long and twisty road we have been on. I am very, very proud of her.


    So what does all of this have to do with Walt Disney World?

    Well, I have a wonderful Aunt who has sent either my wife or myself along with two of our children (as they got old enough), to Disney World, all expense paid for 4-5 days. I, especially have grown to love Disney World. After the last trip in 2004, my Aunt let us know she could no longer afford any trips as she had to move into an assisted living home. We just have not been able to afford to pay our own way, and Wendy would have been in the next group to go, so she has been praying since at least 2007 that she would somehow be able to go. She certainly didn't want to get cancer in order to go, but a Wish trip certainly helps ease the hardships she has been through!



    A couple of weeks ago, we met with two Make A Wish volunteers so Wendy could officially make her wish - a trip to Disney World!
    She really, really, would like to stay on property, preferably at Wilderness Lodge, but would settle for anything really. The volunteers said they would send the five youngest children, and possibly Sarah, because she is still at home and has been a caregiver. As far as dates, they are looking at February or March of next year which is fine with us. If that doesn't work we will probably wait until September or October as we don't want to go during the hot summer months.


    I think I will stop for now. I have to figure out how to post some pictures. I managed to put a couple of pics in my signature, but they seem to appear only half the time.

    If you made it this far – thank you for your patience!
     
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  3. xanphylus

    xanphylus DIS Veteran

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    :welcome:

    Great start!!! I hope they send the big helper daughter too! She deserves to go since she is such a big help. Can't wait to read more. Your daughter sounds like she could def use this trip and I hope she has the best time ever!!!:goodvibes
     
  4. maroo

    maroo DIS Veteran

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    Awesome start!! :)

    I have linked you on the Wish Trippers thread!! :)

    Can't wait to read more about your plans. :goodvibes
     
  5. rcq925

    rcq925 Mouseketeer

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    I am subscribing along for the trip!! Hope you get your dates soon!:goodvibes
     
  6. Manymosi

    Manymosi Wendy got her wish!

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    This is our family:
    [​IMG]

    This is Kathy and Ellen arriving:
    [​IMG]

    Gifts for the family:
    [​IMG]

    During the Wish ceremony:
    [​IMG]

    Wendy making her wish:
    [​IMG]
     
  7. Manymosi

    Manymosi Wendy got her wish!

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    This is what I just sent out to our family and friends:

    Wendy is scheduled for surgery tomorrow at about 10 am. They will remove her adrenal glands which should eliminate her Cushing's. The bad part is she will have to take hormone replacements for the rest of her life. The Doctors said it would only require 2 medications, one of which she is already taking. The reason the surgery is being done sooner than we thought is that the excess hormones her body has been producing for several years were causing a form of Osteoporosis - she has actually shrunk about an inch and a half since March. With the Cushing's gone, her bones should begin to strengthen and grow. So please pray that the surgery will go well and will have to complications like the previous surgery did.
    Kim, Sarah, and Wendy were able to take the Metro to the Capitol hill area tonight for a little sightseeing.
    Because of the suddenness of the surgery, the NIH has offered to fly me there this weekend. We don't know details yet, but hopefully I can fly out Friday afternoon, and return Monday night. We need to work out some babysitting and transportation details in the next day or so.
     
  8. xanphylus

    xanphylus DIS Veteran

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    Hope everything went well for Wendy's surgery!!! I will keep you guys in my prayers for no complications and safe travels! :goodvibes :hug:
     
  9. Manymosi

    Manymosi Wendy got her wish!

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    Well, I'm back from visiting Wendy, Kim, and Sarah. Everything is going pretty well. The pain from the 7 incisions is gradually going away. For the next several days the Doctors will switch from I.V. supplied hormones to pills. They need to find the correct doses for Wendy. Hopefully they can leave this Saturday.
     
  10. Mom2mitokids

    Mom2mitokids DIS Veteran

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    I'm glad Wendy is doing well. I hope she will be home soon.
     
  11. J'sMum

    J'sMum Mouseketeer

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    My prayers are with you and your family, Hope to hear from you soon with good news of her homecoming :grouphug:
     
  12. maroo

    maroo DIS Veteran

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    Just wanted to let you know that I am praying for you guys!
     
  13. hgpiglet

    hgpiglet Earning My Ears

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    I'm so glad your daughter will be getting her wish with all that she has been through. I'll be praying for her as she recovers from her surgery.
     
  14. Manymosi

    Manymosi Wendy got her wish!

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    Sorry for the long delay between posts!

    Wendy had some complications that delayed her return a few days. They were gone a total of 18 days. She developed fluid in her lungs and had a very painful infection near her pancreas/kidneys area. The final test results showed that her body is not producing cortisol, so she officially no longer has Cushing's. She is slowly getting better, but gets frustrated as she has to adjust to the different hormone levels. In the next few months she should start to see some growth in height, and lose some of her excess weight.

    Yesterday we heard from our wish coordinator! She wanted details of Wendy's wish. I told her how Wendy really wanted to stay on property(Wilderness Lodge). She sounded like it probably could happen. If she couldn't make that happen, she asked where else on property Wendy would want to stay. I'm encouraged that she didn't say no, so we will see. I also asked about additional Disney tickets, as we will not be visiting Universal and Sea World. She said she would check on that also.

    As far as dates, she is looking at end of February/early March which would be great for us.

    All in all, it was a very encouraging phone call!
     
  15. J'sMum

    J'sMum Mouseketeer

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    Thank you for updating us ! and I am soooo glad you heard from Wendy's wish coordinater ! :cheer2: I will continue to say prayers for a speedy recovery and hope all goes smooth, looking forward to following along as your PTR progresses :)
     
  16. billwendy

    billwendy DIS Veteran

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    Hi
    I am a Wendy too! I'll be praying for Wendy and the rest of the family too!
     
  17. Manymosi

    Manymosi Wendy got her wish!

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    Finally heard some information regarding dates. Looks like the last week of January, 2011. Should be a great time to go - as long as it doesn't get too cold!

    But the best part is - We got confirmation that we will be staying at Wilderness Lodge!!!!

    Wendy is so excited! She decided to dream big and ask for the place she really, really wanted to stay.

    It doesn't look as hopeful on getting more day's in the parks - but we aren't giving up yet. If Make A Wish says no, we will try a couple of other options.
     
  18. billwendy

    billwendy DIS Veteran

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    YAY!!!! That is totally AWESOME!!!!!!
     
  19. Mom2mitokids

    Mom2mitokids DIS Veteran

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    So glad you have dates. :cool1: Yeah on getting to stay at the Wilderness lodge.
     
  20. rcq925

    rcq925 Mouseketeer

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    Woo Hoo!!!:cool1: That is awesome news! It should be a great time to go and I am so glad that Wendy gets to stay where she really wanted to!:banana:
     
  21. masonbsc

    masonbsc Earning My Ears

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    Congrats on the wish!! My little boy Haden is 3 and made his wish to go to Disney! None of us have ever been so we are just so excited! We are going Nov. 27- Dec 5, Hoping the weather will be great! Cant wait to hear new news from your trip!
     

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