Collin's MAW Pre-Trip Report

Discussion in 'Pre-Trip Reports and Plans' started by Mickydees, Jul 12, 2009.

  1. Mickydees

    Mickydees Earning My Ears

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    Hi all, following is Collin's Pre Trip Make A Wish Report. I hope many of you enjoy getting to know Collin and become informed about his disease. We will be going October 10 - 16, 2009. I will begin by introducing the cast of characters:

    Collin (our wish kid) Age 6 will be seven 7/25
    Angellyn Age 12
    Mishelle Age 17
    Lisa - Mom
    Carey - Dad

    As most other families we feel there are other kids that are more deserving. So reluctantly we let our MD recommended us. We are so looking forward to this trip. It will be a much needed break from our daily battle.

    Briefly, Collin was a healthy boy until 11/07. He had fallen off his bed and bumped his head. (It was later explained the fall did not cause his vision loss but he was most likely already starting to have vision loss which caused the fall) He was taken to the ER, had a CT and everything looked fine. However within a few days he began losing his vision. After a visit to his eye doctor we were sent to a Pediatric Neurologist. After being quickly put into the hospital in Savannah, GA and starting a round of steroids and more tests it was determined Collin had Optic Neuritis. He was diagnosed with MS. In March of 08 we were sent to Children's Hospital at UAB in Birmingham, AL. We were then told we were not dealing with MS but with something called Devic's Disease. Don't feel bad we had never heard of it either. Instead of trying to explain it here feel free to visit http://www.collinsquest.org. Breifly it is a disease that attacks the mylen (an outer protective covering) on his nerves. This is what caused his initial vision loss and subsequent back and leg problems. Collin did regain much of his vision back but has had flare ups since then where he loses some or all of his vision. So far the steroid treatments bring back most of his vision. He is currently receiving monthly chemo treatments along with IVIG in between. This helps although he does have occasional flare ups and is not able to hold out for long periods of time. In the summer of 08 our Ped Neuro relocated out of state. Being unable to find another Ped Neuro familiar with his disease we moved from SE Georgia to NE Birmingham, AL to get the care he needs.

    In a nut shell that is what brings us to our wish trip. Collin is so excited about his trip. We look forward to getting to know the other wish trippers. Feel free to offer any advice for our trip or if you have questions we will be glad to talk with you.

    Guess that's enough for now (if anyone is still with me). Great to be here and looking forward to our adventure.:yay:
     
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  3. Mickydees

    Mickydees Earning My Ears

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    [​IMG]

    Collin & his favorite nascar driver


    [​IMG]

    Collin & his sisters
     
  4. wkualum

    wkualum Mouseketeer

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    Oh those pictures are adorable! And I'm such a sucker for red headed boys! And we share a birthday -- Collin is indeed a piece of my heart now!

    Can't wait to hear more about your trip plans. We are still waiting for our dates and my patience isn't doing so well. It's rather thin ;). I'm just so excited I want to know dates!! :)
     
  5. Matt1026

    Matt1026 Mouseketeer

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    WELCOME!!!! You have a beautiful family. I just love the picture of your family.

    Your story sounds very similar to ours. Our son was in pain in his back and legs but the doctors said it was growing pains. Then after a fall they finally did tests and found out that he too had a rare disease call Langerhans Cell Histiocytosis we too had never heard of that and most of the doctors around here had heard about it but did not know much else. His treatment is very similar. He is on steroids and chemo every three weeks.

    Looking forward to hearing about your planning and your upcoming trip. We leave in 56 days (yes we are counting). We can not wait.
     
  6. MomTo4+more

    MomTo4+more Mouseketeer

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    Collin is simply adorable! October is one of our possible times for travel. We don't have dates yet. I am guessing our trip will be in November. I am looking forward to following your trip report. My son is close to the same age as yours. What is he most excited about at Disney?
     
  7. maroo

    maroo DIS Veteran

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    You guys are awesome.

    I have already checked out the website and am glad that you guys are putting out information to others about this disease that you guys are dealing with each day.

    I can't believe you had to move to get closer to your doctors. That is really hard to up and move. Sounds like Collin is a very fortunate young man to have a family that is taking awesome care of him!

    It sounds like you are well on your way to planning...if you want any help, please let me know! :)

    I can't wait to read more! Thank you for sharing your magical vacation with us!! :)
     
  8. Mickydees

    Mickydees Earning My Ears

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    Collin says he is really looking forward to doing Buz Lightyear. We have also talked about doing the new pirate makeover. He seems to be excited about that too.
     
  9. maroo

    maroo DIS Veteran

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    Buzz is one of my most favorite rides!!!!!

    Remind me to send you guys some "hints" for scoring high...so you can give them to him so he can beat his sisters. He he. :rotfl2:
     
  10. myasma

    myasma Mouseketeer

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    Congratulations on your Wish trip and welcome to the thread? Can't wait to read more about your beautiful family.
     
  11. Mickydees

    Mickydees Earning My Ears

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    Hi all. Hope everyone is doing well. Collin is doing pretty good at present. He has responded well from his last treatment. It's good to see him up and moving around playing for a change. :yay: Since he is doing as well as he is we decided to take a quick day trip to Six Flags in Atlanta, GA. It is only about an hour drive for us. Collin did better than we thought he might. He is not a big roller coaster enthusiast but he did enjoy the water area and the Thomas Town. Here are a couple of pictures.

    [​IMG]

    [​IMG]

    We put in about a good 6 hours, didn't want to tire him out too much. He held up good and seemed to bounce back good. I'll (Dad) be taking care of the kids the rest of the week as Mom (Lisa) will be in Dallas Texas for national rally with her jewelry business.:scared1:
    We have not heard any updates from MAW lately, so we're just looking forward to and planning for our October dates we were given. Collin goes to his Neuro Thursday for some blood work. A question for the trippies: Should we make our on reservations or have MAW do it for us. We have a couple of restaurants we want to do. Really hoping the new Cat Cora restaurant will be open. Also thinking of having Collin do the Pirates League. Any thoughts would be appreciated. We will update as our planning progresses. Still trying to figure out what days to do what as we will be there on Columbus Day. May try to avoid MK that Sunday & Monday but we'll see. Have a great day! :cool1:
     
  12. DWGal210

    DWGal210 DIS Veteran

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    You have a lovely family - I'm so happy for you that you get to take this trip! That's wonderful! :thumbsup2

    Looking forward to hearing more of your plans!
     
  13. maroo

    maroo DIS Veteran

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    About the ressies...

    I think, if MAW makes them...they normally "pay" for them... Our chapter (and each is different) will let the child do one special meal or thing and they cover it. In our case, we asked them to let Lauren do a makeover at BBB.

    If we had been really smart, we would have asked for Mickey's Not So Scary Halloween Party instead and paid for her makeover out of our pocket.

    So, yes...I would let MAW make any reservations that they are willing to make. Each chapter is different with what they will cover. Some chapters pay for parties before you go and a limo ride to the airport...ours didn't and added money in the expense check to do special things/souvies when you are there.

    Having said all of that...

    I would make any reservation on your own, too. Most don't cost you anything to make a reservation. Then you can call them back and cancel any that you are not going to use or where MAW double booked you.

    We also had an issue with something MAW booked...we had to move it...and it helped to have another ressie in place for it.

    Also...I would use the online service to make them...it is so easy and saves the long distance call. :)
     
  14. Corrine 1973

    Corrine 1973 What do you mean I am not a princess, don't you se

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    I don't know about other chapters, but the Illinois chapter told us that they would pay for one special event on top of our trip. I only found this out when I specifically asked for help when I found I didn't have enough money to do everything we wanted to do. :scared1:

    We chose to get tickets to Mickey's Not So Scary Halloween Party because we had to pay for that one up front. I than had a friend help me with the ADR's. We got two Character Meals and one in door dinning. The two character Meals required a Credit card to make reservations but nothing would be taken off the credit card unless we didn't show up with out canceling with in their time frame.:flower3:

    Hope this helps you!!!!
     
  15. Eeyores Butterfly

    Eeyores Butterfly <img src=http://photopost.wdwinfo.com/data/500/509

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    Yes, the standard for most chapters is one special thing. Figure out what special things you are interested in and then choose the one that is the most expensive. You guys are going to love GKTW and Disney!
     
  16. Mickydees

    Mickydees Earning My Ears

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    Collin had a great doctor visit Thursday. Went mainly for blood work. His nurse practitioner said he looked great. Doing better than he has done in a while. :woohoo: His doctor did a mini evaluation and said he was doing great. So no changes on treatment. At home meds stay the same and will continue with once a month chemo treatment (cytoxin). Hope he can keep it up and still be doing good for our MAW trip. Was told they had sent in paperwork for trip. So everything should be good to go now. Mom (Lisa) is having a great time at Premier national rally in Dallas. She can't wait to get home to show everyone the new jewelry. Think she also misses us a little. :love: Collin had a rough time with her being gone yesterday. But he is doing ok today. Hope everyone has a great weekend
     
  17. Eeyores Butterfly

    Eeyores Butterfly <img src=http://photopost.wdwinfo.com/data/500/509

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    I'm glad to hear Collin's visit went well. You all must be getting excited!
     
  18. wkualum

    wkualum Mouseketeer

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    Not only do Collin and I share a birthday, but our trip dates are the same!! Isn't that cool? Maybe we could plan to meet up one day at the village!

    I'm happy to hear that his dr appointment went great!! :cool1:
     
  19. Mickydees

    Mickydees Earning My Ears

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    WKUALUM, we will definately have to try and get together while we are there. We'll try to put something together closer in.

    Collin had a great birthday Saturday (7/25) at the beach in Saint Simons Island, Georgia. He really enjoyed being at the beach and spending time with his cousins, aunts, uncles and Nanna & Pappa. Here are a few pictures from the trip:

    [​IMG]
    Collin playing in the sand

    [​IMG]
    Collin admiring his birthday cake

    [​IMG]
    Collin, Angellyn & Mishelle at the park

    There are a few more pictures on his website: http://www.collinsquest.org/_mgxroot/page_10766.html

    Collin handled the trip pretty well. He did get stiff during the ride. He really enjoyed being at the beach for a few days. Being in the water seems to help with his legs.

    We are also getting ready for school. Since he got sick he has not been able to attend school. We did have a short time of hospital homebound before we moved. School starts 8/10 here. He will begin with a part time schedule on only 1/2 days. Hopefully he'll be able to handle it with no setbacks.

    Collin is really looking forward to his trip. We are still undecided about MNSSHP. He is not really into the halloween thing. Plus he usually wears out by the end of the day. Any thoughts on this would be appreciated. He wants to do the pirate makeover, just hope we can work it all in. We also want to eat at Cat Cora's new restaurant. We will be getting with our local MAW chapter to get us some reservations.

    That's all for now, I'll update later, best wishes to everyone.
     
  20. Corrine 1973

    Corrine 1973 What do you mean I am not a princess, don't you se

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    Happy belated birthday Collin!!!!:bday:party::jumping1:
     
  21. Mickydees

    Mickydees Earning My Ears

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    We started trying to nail down our plans for Collins trip. We were undecided about MNSSHP. We are not really halloween people so not sure if Collin would enjoy. Collin is not really into the scary stuff either. But after much debate we told our MAW volunteer to try to book that for 10/13. If nothing else it will be like an extra 1/2 day at MK. We also asked to have Collin do the pirate makeover. Ever sense he saw it he has wanted to do it. We are going to try to get it just after 4pm on 10/13 hoping we can get in for the party at 4. Still trying to get everything else planed out. Trying for reservations at Cat Cora's new restaurant on Boardwalk for the day we arrive. The flight we want gets in around noon so should give us plenty of time to get checked in at GKTW and spend some time there then go to Boardwalk for dinner. We are also wanting to eat at T-Rex sometime during the week. Now trying to figure out how to work in all 4 parks in the 3 days. Thinking of doing 1 day at MK, 1 day at DHS, and do AK in AM & Epcot in afternoon. MNSSHP will give us some extra time to get in anything we miss at MK. Just hoping the crowds want be to bad as we will be there during Columbus Day weekend. Our plan is to wait till Tuesday to do DW & hit Sea World and Universal Sunday & Monday. All this is still in the planning stage so any opinions would be appreciated.

    Collin has had a pretty good week. Any time he is up walking and playing is a good week:banana:

    Our MAW volunteer said she hoped to have the flight and other reservations finalized by Aug. 10th. Guess we'll know more then if everything falls into place.

    We are praying for all the other families that dealing with their tough times. Praying that God will give comfort and peace.

    Hope everyone has a great weekend.:yay:
     

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