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Old 03-08-2009, 01:47 PM   #1
keetmommy
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Emma's Make A Wish Trip....June 15-21,2009

My DD Emma (almost 7) was born with a genetic disorder called Neurofibromatosis or NF1, most people (60%) with this disorder have no problems. Some have a few problems (20%) and then ther is Emma , shehasn't been so lucky, she is in the rare 20% of people she was born with a something called pseudoarthrosis of the tibia, most people with this will end up with Amputation, she has been lucky and still has her leg, but often experiences pain and has to be really careful.
Then about 1.5 years ago a MRI showed multiple brain tumors, and hydrocephalus. One of these brain tumors is inoperable being it is on her optic chasim, (where the optic nerves meet), this tumor has left her legally blind.she has had 7 surgeries since July '07, 2 of them being recections,of a tumor that was in her Temporal Lobe, that grew back after July and had to be cleaned up again in Feb '08 after that she started a 15 month protacal Chemotherapy that had to be stopped after a year due to allergic reactions. We are now in what is called watching and living mode. Could we end up back in chemo eventually, Sure but for now we are going to enjoy life, Her next MRI is in May-1 month before we leave...(we are under 100 days now though....)
We were at Disney last year, through the help of family. After all of Emma's surgeries, My Godparents let us use their timeshare, IL's bought plane tickets...my parents rented our car...we called it the NON-Make A Wish, Make a Wish trip..
So now for the fun...she is standing up in a wedding the weekend before we leave and we are leaving EARLY on June 15....we will be in Orlando by 1:15 on that day..they are planning a princess meal for us, as that is who Emma loves the best. We are HUGE Jimmy Buffett fans, so a trip to Margaritaville will have to happen...I think that will be on the 17th because that is my birthday. Don't know what else we will do...just wishing it was now as I am watching MORE snow fall outside (we are going to get 4-8 inches today....)

Amie
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Old 03-08-2009, 02:40 PM   #2
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Quote:
Originally Posted by keetmommy View Post
My DD Emma (almost 7) was born with a genetic disorder called Neurofibromatosis or NF1, most people (60%) with this disorder have no problems. Some have a few problems (20%) and then ther is Emma , shehasn't been so lucky, she is in the rare 20% of people she was born with a something called pseudoarthrosis of the tibia, most people with this will end up with Amputation, she has been lucky and still has her leg, but often experiences pain and has to be really careful.
Then about 1.5 years ago a MRI showed multiple brain tumors, and hydrocephalus. One of these brain tumors is inoperable being it is on her optic chasim, (where the optic nerves meet), this tumor has left her legally blind.she has had 7 surgeries since July '07, 2 of them being recections,of a tumor that was in her Temporal Lobe, that grew back after July and had to be cleaned up again in Feb '08 after that she started a 15 month protacal Chemotherapy that had to be stopped after a year due to allergic reactions. We are now in what is called watching and living mode. Could we end up back in chemo eventually, Sure but for now we are going to enjoy life, Her next MRI is in May-1 month before we leave...(we are under 100 days now though....)
We were at Disney last year, through the help of family. After all of Emma's surgeries, My Godparents let us use their timeshare, IL's bought plane tickets...my parents rented our car...we called it the NON-Make A Wish, Make a Wish trip..
So now for the fun...she is standing up in a wedding the weekend before we leave and we are leaving EARLY on June 15....we will be in Orlando by 1:15 on that day..they are planning a princess meal for us, as that is who Emma loves the best. We are HUGE Jimmy Buffett fans, so a trip to Margaritaville will have to happen...I think that will be on the 17th because that is my birthday. Don't know what else we will do...just wishing it was now as I am watching MORE snow fall outside (we are going to get 4-8 inches today....)

Amie
Welcome!!! Good start!!

Would you like to put pictures on there? You can, if you want.

Where are you guys staying? Do you know yet?

How many nights is your trip for?
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Old 03-08-2009, 02:54 PM   #3
keetmommy
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We are staying at give the kids the world....we will be there for 7 days and 6 nights...



Emma is our youngest...she is actually they bigger one in the picture...Delaney is the other child, she is almost 10...has an undiagnosed genetic disorder, but we think we may have an answer!



Here is the family at Margaritaville last spring....OUr oldest is 13 now...and taller then me..
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Old 03-08-2009, 04:46 PM   #4
Piper
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I have NF1, too. I am in the 20% that have mild problems (scoliosis and some tumors here and there) and my daughter is in the lucky 60% that has no problems--just a few small tumors!

I hope the chemo goes really well. I will keep your family in my prayers.
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Old 03-08-2009, 04:56 PM   #5
keetmommy
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Thanks Piper...I too have Nf1 with few problems..I sure hope Emma never has to do chemo again...but we know it is the nature of the beast....Thanks for your prayers...I know prayers got us through the last 2 years...
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Old 03-09-2009, 09:28 AM   #6
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Woo Hoo! Pics!

I am putting a link to your TR on the Wish Trippers Unite thread, if you don't mind.

Also...what organization are you guys going with? And where are you guys staying? And how many nights are you guys going for?
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Old 03-13-2009, 07:27 PM   #7
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Quote:
Originally Posted by keetmommy View Post
We are HUGE Jimmy Buffett fans, so a trip to Margaritaville will have to happen...
I LOVE Jimmy....can't wait to see him again in a couple of months play here in MA. We went to Margaritaville when we were down there a couple years ago and had a blast, make sure you go one night for dinner...it is a blast, I can't wait to go back in a couple of weeks....
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Jake's Make-A-Wish Disney Trip 3/09 (alot of pictures)
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Old 03-14-2009, 10:09 AM   #8
keetmommy
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Originally Posted by dmbfan View Post
I LOVE Jimmy....can't wait to see him again in a couple of months play here in MA. We went to Margaritaville when we were down there a couple years ago and had a blast, make sure you go one night for dinner...it is a blast, I can't wait to go back in a couple of weeks....
We have seen him about 7 times here in WI, we were on a yearly thing and then Em's whole brain tumor thing occurred and well other things took priority. This year we may go and just hang out in the parking lot.
As far as margaritaville goes, we will be going probably for lunch, we went last year and got to meet JD (the radio margaritaville dj and still is just in awe over it...I have a birthday the week we are there (the last one before 40 so it is a big deal) and I am shooting for that day.....
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Old 04-20-2009, 07:29 PM   #9
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Quote:
Originally Posted by keetmommy View Post
My DD Emma (almost 7) was born with a genetic disorder called Neurofibromatosis or NF1, most people (60%) with this disorder have no problems. Some have a few problems (20%) and then ther is Emma , shehasn't been so lucky, she is in the rare 20% of people she was born with a something called pseudoarthrosis of the tibia, most people with this will end up with Amputation, she has been lucky and still has her leg, but often experiences pain and has to be really careful.
Then about 1.5 years ago a MRI showed multiple brain tumors, and hydrocephalus. One of these brain tumors is inoperable being it is on her optic chasim, (where the optic nerves meet), this tumor has left her legally blind.she has had 7 surgeries since July '07, 2 of them being recections,of a tumor that was in her Temporal Lobe, that grew back after July and had to be cleaned up again in Feb '08 after that she started a 15 month protacal Chemotherapy that had to be stopped after a year due to allergic reactions. We are now in what is called watching and living mode. Could we end up back in chemo eventually, Sure but for now we are going to enjoy life, Her next MRI is in May-1 month before we leave...(we are under 100 days now though....)
We were at Disney last year, through the help of family. After all of Emma's surgeries, My Godparents let us use their timeshare, IL's bought plane tickets...my parents rented our car...we called it the NON-Make A Wish, Make a Wish trip..
So now for the fun...she is standing up in a wedding the weekend before we leave and we are leaving EARLY on June 15....we will be in Orlando by 1:15 on that day..they are planning a princess meal for us, as that is who Emma loves the best. We are HUGE Jimmy Buffett fans, so a trip to Margaritaville will have to happen...I think that will be on the 17th because that is my birthday. Don't know what else we will do...just wishing it was now as I am watching MORE snow fall outside (we are going to get 4-8 inches today....)

Amie
We are also leaving on the 15 of June. Are u staying at GKTW?
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Old 04-20-2009, 07:46 PM   #10
keetmommy
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We are also leaving on the 15 of June. Are u staying at GKTW?
Yes we are...will you be there too??
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Old 05-12-2009, 08:41 AM   #11
keetmommy
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Well my mom voice was right, her shunt had failed...we are in the hospital awaiting surgery..better now then 4 weeks from now....it should be a simple surgery...and hopefully will happen soon..
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Old 05-12-2009, 09:04 AM   #12
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We will pray for a sucessful surgery and a quick recovery. Our prayers are with your family.
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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