Preston's Pre-trip

[Synovial]

DisneyWorld here we come. Synovial

 

[Synovial]

Hi! For most of you who do not know us, we are Nancy(mom), Jim(dad), Preston(wish kid), Peyton(little brother). Preston is 12 years old and Peyton is 10. Six years ago Preston started having some pain on his right leg. We took him to his pediatrician, who took an x-ray and said he didn't see anything and sent us to a Pediatric neurologist who didn't see anything. We took him to a chiropractor thinking maybe his knee was out of socket. He didn't see anything. Another doctor suggested a Pediatirc Orthopedist. We took him there, he didn't see anything and said take him home and maybe he will grow out of it. Over the next few years we would go to the pediatrician and have him tell us there is nothing wrong, meanwhile the pain is getting to the point where nothing including clothing can hardly touch it without him screaming if touched in the right spot. Finally in October last year we saw yet another pediatrician who said his knee didn't even look like one and sent us to another pediatric orthopedist. We figured we were wasting our time, but went anyway. The doctor told us it could be 1 of 3 things, so we were shocked someone actually thought something was wrong. He had us come back the next week to see a tumor specialist. The specialist said he thought it was a nerve tumor and could be taken out and everything be fine from that point on. He did a biopsy in November and discovered it had more cells than he was expecting. He sent it off to one lab to look at for a week and they couldn't figure it out so they sent it to another lab for a week and finally determined it was an extremely rare cancer called Synovial Cell Sarcoma and it was malignant. After a CT Scan and a lymph node removal they determined it was only in his leg (thank goodness). In January this year he underwent leg salvage surgery and had the bulk of the tumor removed. The doctors said they had never seen anyone with this kind for this long without being detected. When they removed it they realized it had grown into the synovial fluid in the knee joint and cannot be removed surgically, so he started 6 weeks of radiation therapy an hour and a half away from our house everyday to kill what was left. He finished that in April and is now doing Physical therapy and going constantly to different doctors to get scans, MRI's and x-rays to make sure it doesn't move anywhere else in his body. On the bright side today we had our wish granters come to visit and get his wish. He wants to go to Disney World. They said we will know something in 2 weeks about our wish, so we are attempting to start a pre-trip report. Peyton is just as excited as Preston about Disney. We are hoping for October-November to go. They said it can take up to 6 months to get our trip, so we hope our dates will work out. Synovial

 

[xanphylus]

Hurray! You did it! Now you just need to figure out how to link it on your signature.... Call me later and I can walk you through it if you need me to.

Was he totally excited? I hope they brought Peyton a present too.... I gotta mail him a card or something later if not!

 

[xanphylus]

Did he ask to see the trains or to go to the Halloween party or anything special? Either way, you guys will have a blast!

 

[Synovial]

Preston asked to do the train tour at DisneyWorld and do DisneyQuest when the wish granters came Saturday. They brought Preston a present, but didn't bring anything for his brother Peyton. I didn't know if they usually only bring the wish kid something or the siblings also, so I didn't say anything to Peyton about getting anything so he wouldn't be as upset. He has been really great during all of this. He usually doesn't get upset, but he does ask sometimes if he has any cards. Synovial

 

[Synovial]

I'm sorry I haven't been able to log on lately, but We've been doing an art camp at church this past week. The boys took guitar lessons and photography and I taught Trash sculpting. It was really fun, but didn't allow us a lot of extra time for anything. We just got a letter today from the Make A Wish Foundation stating that they have received everything they need from us and Preston is now in the approval stage. We have also been assigned a wish coordinator to continue planning his wish while they confirm with his doctor that his wish choice is medically approved. Hopefully it won't be much longer before we get an answer. Synovial

 

[blessedmom4]

Hi, it is Judy (Jenn's friend). Please try this link for your signature.




Copy and paste the entire code...Look in post 2 of the [URL="http://www.disboards.com/showpost.php?p=39740655&postcount=470"]WISH TRIPPER'S THREAD to see how to make the Link into a word or sentence.
This is another GREAT EXPLANATION!

Looking forward to reading more!

 

[xanphylus]

I'm sorry I haven't been able to log on lately, but We've been doing an art camp at church this past week. The boys took guitar lessons and photography and I taught Trash sculpting. It was really fun, but didn't allow us a lot of extra time for anything. We just got a letter today from the Make A Wish Foundation stating that they have received everything they need from us and Preston is now in the approval stage. We have also been assigned a wish coordinator to continue planning his wish while they confirm with his doctor that his wish choice is medically approved. Hopefully it won't be much longer before we get an answer. Synovial

That sounds like lots of fun! I think we may come up to your neck of the woods this week for the 4th of July parade! Mom said she would go with us too, and to show us where to go. Hope to see you there!

 

[wishin' on a star]

Just wanted to say Hi and that I'm following along! I hope you get confirmation of dates soon!!!

 

[blessedmom4]

Have fun at the parade! I hope you see Jenn and Davy!!!

 

[disneymomma01]

extremely rare cancer called Synovial Cell Sarcoma

Congrats on the big trip!!

I actually had the same type of cancer that your son had, but mine was found in my stomach!! I had surgery last year to remove 10% of my stomach & am now in full remission!!

I hope you guys have a magical Disney trip!!

 

[Synovial]

We were contacted by our wish granter this week to work out the final details of our disney trip. Preston really wanted to be able to go on the train tour at magic kingdom and do DisneyQuest. They told him he could not do both so he had to pick one. He chose the train tour, but still really wants to go to Disney Quest. I'm going to check and see how much it costs, but I don't know that we will be able to do it. Our finances aren't in good shape right now. My husband is a builder and there's not a lot of work out there right now and we have the medical bills to deal with. I'm not sure how much they are going to give us for the trip. They are providing us with a rental car and gas money to drive down and tickets for sea world, Disney, and Universal. I think Preston is going to be able to stay on Disney grounds. He really really wants to. They said we will be notified in about a week or so about the final arrangements and will get our date then. I will update this as I find out more information. Synovial

 

[Synovial]

Congrats on the big trip!!

I actually had the same type of cancer that your son had, but mine was found in my stomach!! I had surgery last year to remove 10% of my stomach & am now in full remission!!

I hope you guys have a magical Disney trip!!

I am a homeschooling mom too! It's nice to hear from another homeschooler. Synovial

 

[billwendy]

Sounds like a lot of fun! Disney quest is alot of fun - we love it, although we havent been in a few years ( :

When are you going?

 

[maroo]

I have never been to Disney Quest, but it really sounds like fun! I hope you guys will be able to do both!



Do you guys have dates yet? Do you happen to know where you guys will be staying?

 

[Synovial]

We are still waiting for our date to go. It sounds like we are going to be staying on Disney grounds. Preston is wanting to stay at the Contemporary. He loves the fact that the monorail goes through it. I'll update when I know more. They already told us we couldn't do DisneyQuest, because it would be considered a separate deal. So I guess we're not going to be able to do that. Synovial

 

[Synovial]

I just talked to our wish granter and it looks like we will be going to Disney October 29th. We have a few more details to work out, but it looks like we will be staying at the Contemporary(where Preston wanted to stay). He also wanted to do the train tour at Magic Kingdom and DisneyQuest, but they will only allow him to do one, so he is doing the Train tour. I will update again when I have more information.

 

[Happy Dreams1]

It's great to hear the Preston is getting what he has always wished for!

I'm 16 and a wish child and I'll going to my Wish trip in 2 days!

 

[billwendy]

I just talked to our wish granter and it looks like we will be going to Disney October 29th. We have a few more details to work out, but it looks like we will be staying at the Contemporary(where Preston wanted to stay). He also wanted to do the train tour at Magic Kingdom and DisneyQuest, but they will only allow him to do one, so he is doing the Train tour. I will update again when I have more information.

That sounds like a lot of fun. I 've always wanted to take one of those Disney tours!!! And YAY for the Contemporary!!!!!! and Dates!!!

 

[vickalamode]

I just talked to our wish granter and it looks like we will be going to Disney October 29th. We have a few more details to work out, but it looks like we will be staying at the Contemporary(where Preston wanted to stay). He also wanted to do the train tour at Magic Kingdom and DisneyQuest, but they will only allow him to do one, so he is doing the Train tour. I will update again when I have more information.

YAY! That's awesome that he gets to stay where he wanted I don't know how wish trips work and what the rules are but are you allowed to take him to Disney Quest separately and pay for it yourself maybe?