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Old 07-12-2009, 04:37 PM   #1
Mickydees
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Collin's MAW Pre-Trip Report

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.
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Old 07-12-2009, 05:28 PM   #2
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Collin & his sisters pics



Collin & his favorite nascar driver




Collin & his sisters
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Old 07-12-2009, 06:06 PM   #3
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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!!
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Old 07-12-2009, 06:49 PM   #4
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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.
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Old 07-12-2009, 07:15 PM   #5
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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?
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Old 07-12-2009, 08:43 PM   #6
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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!!
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Old 07-12-2009, 08:52 PM   #7
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Quote:
Originally Posted by MomTo4+more View Post
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?
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.
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Old 07-12-2009, 09:06 PM   #8
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Quote:
Originally Posted by Mickydees View Post
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.
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.
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Old 07-12-2009, 09:41 PM   #9
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Congratulations on your Wish trip and welcome to the thread? Can't wait to read more about your beautiful family.
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Old 07-15-2009, 02:03 PM   #10
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Pre Trip Park Practice

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. 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.





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.
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!
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Old 07-15-2009, 02:17 PM   #11
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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!

Looking forward to hearing more of your plans!
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Old 07-15-2009, 05:25 PM   #12
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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.
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Old 07-15-2009, 07:17 PM   #13
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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.

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.

Hope this helps you!!!!
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Old 07-15-2009, 11:19 PM   #14
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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!
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Old 07-17-2009, 08:28 AM   #15
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Thumbs up Great Doctor visit

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. 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. Collin had a rough time with her being gone yesterday. But he is doing ok today. Hope everyone has a great weekend
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