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Old 05-06-2009, 11:06 PM   #1
Matt1026
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Make A Wish September 5th - September 11th

Hello!

I am very new at this and to be honest a little nervous about starting this. I also want to say to everyone that I have enjoyed reading everything. I have learned alot from you all. I feel like I know several of you. I have laughed with you and cried with you. You have given me hope.

As I say we are just starting on our wonderful adventure. We have found out we are approved for our Make a Wish. We will meet with our volunteer on Monday May 11th. My son Lucas is so excited!! He has already told me I know what I want to do on my wish. I want to go to DisneyWorld and I said that sounds great to me!!! So we are very excited. We found out around April 9that we were approved and it has just put an air of excitement in our home. And after ready several of your stories that has just added to my excitement. We of course do not know dates but we do know it will be at least the fall. Lucas' doctor does not want him to travel until after chemo is over and our last chemo should be the end of July. We know we have to have three dates so we are hoping sometime in September. I not sure how long it takes to get your dates approved. I guess you all can help me out with some kind of estimate of how long it took you.

Well I guess I will share with you of how we got here. In February of 2008 my son started having leg pains. And we just thought it was leg cramps or growing pains and then he would just walk and he would just fall into the floor screaming with pain and he would just stay and scream in pain until the pain would pass. We would take him to doctors and no one knew what was going on. To make a very long story short after two months of searching for answers we finally found a doctor who would help us. Lucas my 7 year old had a biopsy and we found out he has LCH (Langerhans Cell Histiocytosis). LCH is disease caused by too many histiocytes, a type of white blood cell, that cluster together and destroy healthy tisses and organs such as skin, bone, lung, liver, eyes, ears, the central nervous system. At this point it was in his L5 vertebra and it was destroyed that was the reason for his back going out. Then within a month he started complaining of an ear ache. Within a few days we had a golf ball size knot on his jaw. That has destroyed b one in his jaw bone . A few week later he started to walk funny and he developed the third lesion that had put a hole in his pelvic bone. At this point he had started his treatment 12 months of chemo (we started in July). We started out once a week for 12 weeks and then we go every three weeks. He also has been taking alot of steroids. So needles to say we have had an adventure. He seems to be responding well to his treatment. That is how we got to Make A Wish. It has been a hard 14 months and this will be a great way to celebrate with what we hope is an end to treatment (which we will not know for sure until he is scanned again in August). We also have a four year old son Alex. It has been hard on him. I know that he feels like he has been put on the back burner. When we go to treatment it is about 2 hours away. So we are on the road for at least four hours. So Alex has to stay home with family. Also everyone always stops and checks on Lucas and there stands Alex. So this will be a great experience for Alex too. I have enjoyed the pictures and stories of the siblings. This has encouraged me for Alex.

Sorry I went on forever. But I will post after we meet with our volunteers on Monday. Please feel free to give me any advice. I need all I can get. It seems these days I do not think to well. So I need help.

Thank you for reading my post.

Last edited by Matt1026; 07-02-2009 at 10:36 PM.
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Old 05-06-2009, 11:33 PM   #2
maroo
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to the DISboards!!! We are happy to have you!

You are going to enjoy hanging out here as you guys plan!

Bless your hearts...sounds like you guys could use a Wish Trip!

I am so glad you found us! I will link this on the Wish Trippers Unite thread and get ya started!! Feel free to ask any questions you have!
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Old 05-07-2009, 09:25 AM   #3
Corrine 1973
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Welcom Matt to our DisBoards. I am so glad you found us and glad that Lucas was excepted for a Wish.

My biggest advice for you right now is to make sure you have all the paper work they need ready. Having your Drivers license and the kids birth certificates photo copied already made the process a little easier.

As for how long it takes, it really depends on the the wish org., the needs of the family, and what is available. We saw are volenteer in March and just finally got confirmation about our dates for GKTW. We are still waiting for the confirmation on the Airplane tickets. While other families have there meetings and find out within a couple of days that there dates have been confirmed. The volenteer should let you know about how long there chapter usualy takes.

September is a great time to go from what everyone is telling me. There select dates open for MNSSHP open at this time and looks it is a real fun time. I looks like my family is going September 14-19 so maybe our dates will overlap.

I would also check out the Give Kids The World web site. It's were wish kids usually stays and is definatly magical.
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Old 05-07-2009, 12:27 PM   #4
BeckySob
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Welcome!

Omigosh, your family soooo deserves this trip! You guys will have so much fun! I can totally relate to the sibling issue. But this trip is not only for Lucas, but for Alex and you as well. AWESOME!

Can't wait to hear about your meeting with MAW.
From the time the application was sent in, to the dates being sent, for me took just less than a month! MAW here didn't waste any time! Be sure you can stay at GKTW! It's the most amazing place!

Feel free to ask any questions, large or small.
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Old 05-07-2009, 01:06 PM   #5
Matt1026
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Smile

Thank you so much for all of you getting back with me. It makes me feel like I am not alone. That is so comforting to me.

Looking forward to getting to know all of you.
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Old 05-07-2009, 09:25 PM   #6
Matt1026
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I really enjoyed reading about your trip. It has really gotten us excited about everything. I really loved the pictures!!!!
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Old 05-07-2009, 09:43 PM   #7
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you all are going have so much fun
my other kids enjoyed it as much as our wish child
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Old 05-07-2009, 10:33 PM   #8
Matt1026
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That is good news!!! I am excited for Lucas(the wish child) but his little brother can also use the trip.
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Old 05-09-2009, 01:16 PM   #9
bellairisa
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Great start to your pre-trip report, definately try to stay at GKTW, I've heard so much wonderful things about it, that when the MAW volunteers came to visit my DD Malia, I requested that we would like to stay there instead of a reg. Disney resort, we'll be staying there this June for a week.
Can't wait to here more for you.
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Old 05-10-2009, 11:55 AM   #10
Matt1026
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Quote:
Originally Posted by bellairisa View Post
Great start to your pre-trip report, definately try to stay at GKTW, I've heard so much wonderful things about it, that when the MAW volunteers came to visit my DD Malia, I requested that we would like to stay there instead of a reg. Disney resort, we'll be staying there this June for a week.
Can't wait to here more for you.
Thank you for the tip. We are getting so excited. Lucas has 2 1/2 months left of chemo. This trip has given us more to focus on.

I can not wait to hear your post trip report. Make sure to take good notes I will be sure to have alot of questions as our trip approaches.

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Old 05-11-2009, 11:18 PM   #11
Matt1026
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Make A Wish Meeting!!


We got to meet with our wonderful Make A Wish Volunteers tonight. WOW what a feeling! Lucas was so excited to finally get to meet them. They asked him what his wish was and he said without a moment of doubt I want to go to Disneyworld and ride the trains. He did not hesitate for one moment. Alex surprised me and wanted to stay right there with his brother while they talked to him. The boys had a wonderful time with the MAW volunteers. Now the waiting begins. I hope for Lucas' sake it is not a long wait. He does not wait very well.

Looking forward to taking this journey with all of you!!!
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Old 05-12-2009, 12:54 AM   #12
bellairisa
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Yay! I'm so excited for you guys!
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Old 05-12-2009, 08:37 AM   #13
maroo
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Quote:
Originally Posted by Matt1026 View Post

We got to meet with our wonderful Make A Wish Volunteers tonight. WOW what a feeling! Lucas was so excited to finally get to meet them. They asked him what his wish was and he said without a moment of doubt I want to go to Disneyworld and ride the trains. He did not hesitate for one moment. Alex surprised me and wanted to stay right there with his brother while they talked to him. The boys had a wonderful time with the MAW volunteers. Now the waiting begins. I hope for Lucas' sake it is not a long wait. He does not wait very well.

Looking forward to taking this journey with all of you!!!
Woo Hoo!!!!!

Let us know when you guys get DATES!
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Old 05-18-2009, 10:54 PM   #14
Matt1026
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The Brothers



I finally did it! Lucas is in the green shirt. He is the MAW child. That is my Alex he is 4 years old.
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Old 05-18-2009, 11:00 PM   #15
Matt1026
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Here are two more pictures. One is of Lucas and the other one is Lucas' dad and his brother.
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