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Old 08-06-2010, 07:45 AM   #121
J'sMum
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Originally Posted by xanphylus View Post
Looks good to me.... this coming from the person who has not looked at a schedule at all! I would def take that vacation - in a heart beat!! (you can throw me in your luggage!!! )
Sure ! We have been told to bring a spare empty bag so there we go ! all set hehehe
I noticed the MNSSHP thing too... but Maroo beat me to it as usual.... so I just didn't respond at all instead. lol. It's been a long 2 days! Both kiddos home for right now and both want full attention. I can only do so much.
YAY for kiddos and while yes they want full attention isn't it great I love summer vacations with the kids home, yes they drive me batty but i love every min of it
I haven't been to the restaurant you picked out. You'll have to let me know how it is. I want to try to hit Disney for a day when we go to Universal, but I dunno. It's an expensive one day trip there! It's be easier to do a one day universal on a Disney trip- cheaper too.... but DD wants the Harry Potter trip.... so I dunno.
I'll definatly have it in our TR, It's not a full serve restaraunt but a counter service style but thats ok with us, most times they are faster which means we can eat n go! We also loved the way it looked on the outside will make a cute picture opportunity I think DD and I are most excited about picture opportunities hehehe. My sons original idea for his wish trip was to go see the new Harry Potter place, then he changed his mind prior to meeting with wish grantors and said Disney, when he found out he gets to do both he was just soooooo excited


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Originally Posted by Haybuggsmom View Post
I'm glad other families are like ours, things going wrong...still laughing!!
Ah yes if ya lose laughter, then it makes for a long road. Sometimes it takes a wee bit of time to find the humor... but in the end one of us will find it and get the others laughing We're lucky people ya know, while yes life throws us curve balls we will find a way to enjoy every moment we can.

Quote:
Originally Posted by Mom2mitokids View Post
Be careful of the ant at Honey I shrunk the kids playground. It attacked Steven. He slid off the ant and hit his chin and bite his cheek pretty good. He had a nice boo boo.
Awwww owwie lol we will scold the ant for Steven! woot another great picture opportunity! wonder how many odd looks we can get while scolding an oversized ant?

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Originally Posted by rcq925 View Post
Sounds like a great plan! What is the wish flight party at GKTW? Is that something new? I have never heard of it.
I'm still confused with WishFlight to be honest with you, there is very limited information out on it however this is what I do know; wishflight happens once a year usually around the start of october this is either the 15th or 16th year they have done this I do beleive (they being American Airlines and Something Maagical Foundation, all are current, or past employees of AA and they volunteer thier time to have send off parties for kids going on wish trips.) From what I have read and been told the ones volunteering also have the opportunity to go to GKTW the following day for a party. They volunteer thier time to put this on as well. It's a yearly event from what I understand. Other than that we do not know anything else and from what I am gathering they keep it that way so it's all surprises. There is a video on the GKTW site about the event(Where I pretty much got the info listed above) There is another family from Disboard that was in the interview if i read that correctly and Maroo with Lauren (I hope I have that correct) had the opportunity to be a small part of it.
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Old 08-06-2010, 07:46 AM   #122
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OK I am still laughing about all the multiquote talk on the other forum just had to tell ya that
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Old 08-06-2010, 01:19 PM   #123
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Originally Posted by J'sMum View Post
I'm still confused with WishFlight to be honest with you, there is very limited information out on it however this is what I do know; wishflight happens once a year usually around the start of october this is either the 15th or 16th year they have done this I do beleive (they being American Airlines and Something Maagical Foundation, all are current, or past employees of AA and they volunteer thier time to have send off parties for kids going on wish trips.) From what I have read and been told the ones volunteering also have the opportunity to go to GKTW the following day for a party. They volunteer thier time to put this on as well. It's a yearly event from what I understand. Other than that we do not know anything else and from what I am gathering they keep it that way so it's all surprises. There is a video on the GKTW site about the event(Where I pretty much got the info listed above) There is another family from Disboard that was in the interview if i read that correctly and Maroo with Lauren (I hope I have that correct) had the opportunity to be a small part of it.
Lauren was originally chosen for Wish Flight in 2008 - but the AA flight from Jackson went to Texas (Houston or Dallas - can't remember) and then to Orlando. But it was a lot easier on Lauren to have a direct flight, which was only offered by Southwest. So...she ended up only sort of being involved in Wish Flight.

But we did have another DISer that was a part of wish flight in 2009...in fact...I am pretty sure that is the video on the GKTW website...Jozlynn - is one of the DISer wish kids. I know they had done a video about her...but not sure if that is the same one you have seen.
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Old 08-06-2010, 04:38 PM   #124
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Lauren was originally chosen for Wish Flight in 2008 - but the AA flight from Jackson went to Texas (Houston or Dallas - can't remember) and then to Orlando. But it was a lot easier on Lauren to have a direct flight, which was only offered by Southwest. So...she ended up only sort of being involved in Wish Flight.

But we did have another DISer that was a part of wish flight in 2009...in fact...I am pretty sure that is the video on the GKTW website...Jozlynn - is one of the DISer wish kids. I know they had done a video about her...but not sure if that is the same one you have seen.
Yep Thats the video I was able to see was still a vauge video hehe but a well done one beautiful family they are and I do recall that about Lauren Think it's so great that they had her involved in the send off party cake etc
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 08-06-2010, 05:31 PM   #125
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So here is a small update about the wish child himself His Next Remicade treatment is coming up again ALREADY! Next wednesday. hard to beleive that this is the second one since I started here on the Disboard. *sigh* I always get so anxious with these treatments... For every treatment he has the risk of rejecting the treatment and having a reaction increases, If we have calculated correctly this will be his 31st treatment since being diagnosed. He has had a couple of small reactions in the past but nothing serious enough for a panic attack so far but... doesn't take the fear away and doesn't stop me from screaming inside my head at the idea we have to do everthing against what I was taught and instincts for your children are.. No toxins make sure they have a balanced diet etc etc etc.. and here I am having to have the Dr's give him something toxic.. and he still can't have any veggies and most fruits no nuts no whole grains ah well I am a broken record with this, but this is what I go through every 6 to 8 weeks My son is aware of the risks of the treatments and for about 3 days after he is run down and sick to tummy. Here is a picture from a couple trips ago to the hospital just at the start of the treatment, Oh and hello !! LOL I am off in the left hand corner curled up trying to hide from camera.

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Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 08-08-2010, 12:45 PM   #126
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Originally Posted by J'sMum View Post
So here is a small update about the wish child himself His Next Remicade treatment is coming up again ALREADY! Next wednesday. hard to beleive that this is the second one since I started here on the Disboard. *sigh* I always get so anxious with these treatments... For every treatment he has the risk of rejecting the treatment and having a reaction increases, If we have calculated correctly this will be his 31st treatment since being diagnosed. He has had a couple of small reactions in the past but nothing serious enough for a panic attack so far but... doesn't take the fear away and doesn't stop me from screaming inside my head at the idea we have to do everthing against what I was taught and instincts for your children are.. No toxins make sure they have a balanced diet etc etc etc.. and here I am having to have the Dr's give him something toxic.. and he still can't have any veggies and most fruits no nuts no whole grains ah well I am a broken record with this, but this is what I go through every 6 to 8 weeks My son is aware of the risks of the treatments and for about 3 days after he is run down and sick to tummy. Here is a picture from a couple trips ago to the hospital just at the start of the treatment, Oh and hello !! LOL I am off in the left hand corner curled up trying to hide from camera.

I'm sorry he has to go through another treatment. I will have to look up Remicade. The medical person in me needs to know what everything is. I will be hoping and praying that all goes well.
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Old 08-08-2010, 10:10 PM   #127
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Originally Posted by Mom2mitokids View Post
I'm sorry he has to go through another treatment. I will have to look up Remicade. The medical person in me needs to know what everything is. I will be hoping and praying that all goes well.
Hiya Mom2mitokids here is a link for you if you have not already found one

http://www.remicade.com/remicade/global/index.html

I think the hardest part that I still work on digesting is this part right here;

Some children and teenagers who received infliximab injection and similar medications developed severe or life-threatening cancers including lymphoma (cancer that begins in the cells that fight infection). However, most of these children and teenagers had autoimmune disorders (conditions in which the immune system attacks a healthy part of the body) that may have also increased the risk that they would develop cancer. If your child develops any of these symptoms during his treatment, call his doctor immediately: unexplained weight loss; swollen glands in the neck, underarms, or groin; or easy bruising or bleeding. Talk to your child's doctor about the risks of giving infliximab injectioninjection to your child.

My son does have autoimmune disorders aka crohns - psorisis etc etc etc along with glaucoma and cataracts

Some children and teenagers with Crohn's disease (a condition in which the body attacks the lining of the digestive tract, causing pain, diarrhea, weight loss, and fever) who used infliximab injection developed a rare and life-threatening type of cancer called hepatosplenic T-cell lymphoma. These patients were also taking azathioprine (Imuran) or 6-mercaptopurine (Purinethol) when they developed this cancer.
My son was on 6mp for quite some time before his pancreas counts went to high now he is on a different drug similar to 6mp

My son has had swollen glands almost mumps like most of his life so this would be a sign that we would miss, and he easily bruises on a normal basis, the newest thing he started to get about 2 yrs ago was the hickey style rashes that will pop up before your eyes. Dr already keeps an eye on this.

Even though this drug sounds so scary It seems to be the best one for him so far at his worst he lost the ability to walk due to the severe pain in his joints so, I was carrying him around on my hip most times (3 yrs ago) hard to beleive that it was only 3 yrs ago i was still popping him up on my hip to help him get around. Right now even though he does go through a cycle of being tired between treatments etc and he has some days where the pain is pretty high, he plugs along and acts no different then most of his friends. Oddly enough he was hit by a car when he was 7 yrs old, standing on a sidewalk, the driver was watching for a cat supposedly and went up onto sidewalk and hit my son... This accident turned out to be a blessing in disguise, My son has pain on a daily basis but not as severe as it normally would be, The only permanant head injury he received was where his pain receptors are.. so he does not feel pain as well as he should. He feels it Just dulled down. So as crazy as this sounds it turned out to be a good thing he was in that accident. Everything happens for a reason just sometimes it takes awhile to see the reasons



OOOo and my posts will be more positive in a few days !!! I will get back to planning things and to the countdowns
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
it beats within you naturally loving from the start.
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Old 08-09-2010, 03:38 PM   #128
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Quote:
Originally Posted by J'sMum View Post
Hiya Mom2mitokids here is a link for you if you have not already found one

http://www.remicade.com/remicade/global/index.html

I think the hardest part that I still work on digesting is this part right here;

Some children and teenagers who received infliximab injection and similar medications developed severe or life-threatening cancers including lymphoma (cancer that begins in the cells that fight infection). However, most of these children and teenagers had autoimmune disorders (conditions in which the immune system attacks a healthy part of the body) that may have also increased the risk that they would develop cancer. If your child develops any of these symptoms during his treatment, call his doctor immediately: unexplained weight loss; swollen glands in the neck, underarms, or groin; or easy bruising or bleeding. Talk to your child's doctor about the risks of giving infliximab injectioninjection to your child.

My son does have autoimmune disorders aka crohns - psorisis etc etc etc along with glaucoma and cataracts

Some children and teenagers with Crohn's disease (a condition in which the body attacks the lining of the digestive tract, causing pain, diarrhea, weight loss, and fever) who used infliximab injection developed a rare and life-threatening type of cancer called hepatosplenic T-cell lymphoma. These patients were also taking azathioprine (Imuran) or 6-mercaptopurine (Purinethol) when they developed this cancer.
My son was on 6mp for quite some time before his pancreas counts went to high now he is on a different drug similar to 6mp

My son has had swollen glands almost mumps like most of his life so this would be a sign that we would miss, and he easily bruises on a normal basis, the newest thing he started to get about 2 yrs ago was the hickey style rashes that will pop up before your eyes. Dr already keeps an eye on this.

Even though this drug sounds so scary It seems to be the best one for him so far at his worst he lost the ability to walk due to the severe pain in his joints so, I was carrying him around on my hip most times (3 yrs ago) hard to beleive that it was only 3 yrs ago i was still popping him up on my hip to help him get around. Right now even though he does go through a cycle of being tired between treatments etc and he has some days where the pain is pretty high, he plugs along and acts no different then most of his friends. Oddly enough he was hit by a car when he was 7 yrs old, standing on a sidewalk, the driver was watching for a cat supposedly and went up onto sidewalk and hit my son... This accident turned out to be a blessing in disguise, My son has pain on a daily basis but not as severe as it normally would be, The only permanant head injury he received was where his pain receptors are.. so he does not feel pain as well as he should. He feels it Just dulled down. So as crazy as this sounds it turned out to be a good thing he was in that accident. Everything happens for a reason just sometimes it takes awhile to see the reasons



OOOo and my posts will be more positive in a few days !!! I will get back to planning things and to the countdowns
Thank you for sharing the link. I can understand the fears of doing treatments. It always seem that you need to do one thing for a disease, but can lead to other diseases. I will be hoping and praying that everything goes well tomorrow...you did say Tuesday...right.
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PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

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Old 08-11-2010, 04:53 PM   #129
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I hope the treatment is going well. Keeping everyone in my thoughts and prayers.
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PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

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Old 08-11-2010, 07:49 PM   #130
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I hope the treatment is going well. Keeping everyone in my thoughts and prayers.
TY so much, Treatment did go well this time. In fact we was out of hospital a couple hours sooner then usual, everything just seemed to fall into place this time. which is rare. They have to order the meds after arrival and IV is in , otherwise they do not order because it is a $6000.00 Drug. so by doing this it usually takes about 45 mins to get the order in and have it delivered to the Childrens Hospital. but not today ! so I can breathe easy again for another 6 weeks give or take. and can go back to trying to be more positive hehe and and and !! ONly 1 more treatment left prior to Disney/GKTW. I do not have much of an update atm as far as planning goes but I may have a few more pics to post random ones in teh next few days for now I am tired and will have to catch up on PTR's and TR's tomorrow to everyone following along. And ty for the well wishes
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

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Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 08-11-2010, 09:19 PM   #131
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Glad everything went well!!! That's great news and will def make planning a lot more fun!
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Old 08-12-2010, 09:23 AM   #132
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Well I was thinking I would be quiet for a spell on J's PTR due to fact that the majority of trip is planned out so that we can leave room to "go with the flow" But NOPE ! We have been chosen for the Big Give also I am so humbled and honored and amazed at how all of you do this. I am thankful for the pixie dust that you are all sharing. I want to thank all of you on the boards for being so welcoming and wonderful and making the planning of this trip amazing. This trip for my son has me in awe in so many directions. The generosity of so many strangers , from the Dream Factory to here on the disboards and more is so so wonderful. Just about the time we all began to lose faith in so much while so much was going wrong this Trip comes along and I was led to everyone here. Its just so amazing to have something to look forward to , smile about , get excited about ! Kids are smiling again and laughing more!! I'll stop now before I write another novel here
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
it beats within you naturally loving from the start.
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Old 08-12-2010, 12:41 PM   #133
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Well I was thinking I would be quiet for a spell on J's PTR due to fact that the majority of trip is planned out so that we can leave room to "go with the flow" But NOPE ! We have been chosen for the Big Give also I am so humbled and honored and amazed at how all of you do this. I am thankful for the pixie dust that you are all sharing. I want to thank all of you on the boards for being so welcoming and wonderful and making the planning of this trip amazing. This trip for my son has me in awe in so many directions. The generosity of so many strangers , from the Dream Factory to here on the disboards and more is so so wonderful. Just about the time we all began to lose faith in so much while so much was going wrong this Trip comes along and I was led to everyone here. Its just so amazing to have something to look forward to , smile about , get excited about ! Kids are smiling again and laughing more!! I'll stop now before I write another novel here


WAHOO!!!! I was hoping you would get picked!!! Congrats!! It will be great fun for the kiddos and you too! It will be lots of fun waiting for the mail to get to your house everyday. I love it when there is something actually good in the mail. Rarely happens in this house- bleh- it's always bills.... But hooray!! Now it will pass the time until your trip even faster! Better get a camera so you take pics of those excited, happy and cute faces!
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Old 08-12-2010, 03:57 PM   #134
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WAHOO!!!! I was hoping you would get picked!!! Congrats!! It will be great fun for the kiddos and you too! It will be lots of fun waiting for the mail to get to your house everyday. I love it when there is something actually good in the mail. Rarely happens in this house- bleh- it's always bills.... But hooray!! Now it will pass the time until your trip even faster! Better get a camera so you take pics of those excited, happy and cute faces!

Same here! I was watching for this one! definitely get the info back to them quickly! It will be so much fun for everyone!

Lynn
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Old 08-12-2010, 06:48 PM   #135
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TY so much, Treatment did go well this time. In fact we was out of hospital a couple hours sooner then usual, everything just seemed to fall into place this time. which is rare. They have to order the meds after arrival and IV is in , otherwise they do not order because it is a $6000.00 Drug. so by doing this it usually takes about 45 mins to get the order in and have it delivered to the Childrens Hospital. but not today ! so I can breathe easy again for another 6 weeks give or take. and can go back to trying to be more positive hehe and and and !! ONly 1 more treatment left prior to Disney/GKTW. I do not have much of an update atm as far as planning goes but I may have a few more pics to post random ones in teh next few days for now I am tired and will have to catch up on PTR's and TR's tomorrow to everyone following along. And ty for the well wishes
Glad to hear everything went well. I kepted looking for updates yesterday.
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PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

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