**London's Wish Trip! Pre-Trip Report**

[blmalloy]

London Grace is a happy, cheerful 6 year old who loves all things Disney. She was lucky to be born into a family with parents who are happily obsessed with visiting the park (our home park is Disneyland…we are in AZ so its an easy trip over), so she has grown up visiting the magical place at least once a year.

About 3 years ago, she stopped growing. At her six year well check, her doctors referred her to endocrinology. She was diagnosed with Growth Hormone Deficiency, and we were excited to finally have an answer for her stunted growth and to start therapy for her. She had to have an MRI to make sure there wasn't anything in her brain that would be causing her pituitary to not function correctly.

They found a tumor on May 14th.

She had a full craniotomy on June 17th, but they were unable to remove all of the tumor. There were several side effects from the surgery, and we still have a long road ahead since, well…she still has a brain tumor. The future is a bit unknown, but her prognosis is stable for now.

Her wish came at the perfect time. We just have one MRI scan to get through in September, and if her tumor is still stable, we can travel according to plan on November 5th.

Her wish is to go to Walt Disney World, but more specifically to "dress up like a princess and go inside Cinderella's Castle". We shall see.

(Also, I'm new to all of this, so I'm still working with my signature and whatnot, lol!)

 

[jojuvanlaanen]

following along!! Our wish daughters are the same age! (and both with neurological conditions unfortunately... But it's great that this trip gives them something to look forward to!

 

[gwynne]

Following along with your Wish Trip plans!

 

[blmalloy]

To give a little background story on how we got involved with MAW…I didn't start the process. I was still under the assumption that MAW worked with kids who had end of life wishes. My MIL told me that she contacted MAW and I kind of freaked out a little, lol. This was right after we discovered her tumor and found out that she needed brain surgery. I called MAW and they were incredible. I felt awkward about the whole process, just wondering if she'd actually qualify for a wish and the "stigma" of it, you know? MAW reminded me that our doctors were the ones who decided if she was wish worthy, and if they thought she was, we should let her wish away!
Her surgery was June 17th. Honestly, after all of that MAW was the furthest thing from my mind. She was hospitalized for two weeks and ended up with a condition called Diabetes Insipidus which, for her, has been a beast to manage. So it was quite a shock when MAW called almost a month after her surgery to tell us that she could have a wish granted. I cried.
And cried.
The poor lady. I believe at one point I said, "This is so exciting! And sad. And exciting! And sad." Because it is. Yes, a wish is exciting. We will experience Disney in a way we never could otherwise.
I'd give it all back in a second if we could.

But, since we can't…bring the Wish on! I've sat bawling at the computer, full on happy tears, reading everyone's trip reports. Having something like this to look forward to has changed this family.

 

[ember303]

You are right! It is so exciting, but so sad! Jackson's dr referred him. Then he sent me a copy of the paperwork he faxed in! Reading it was so sad! I know my little guy has been pretty sick! However I guess I just thought well it could worse... Reading the paperwork was devastating. Not that the dr has not told us all of it, but to read things like significant increased risk of morbidity. Well as you know it is just heartbreaking. Seeing it all on paper made it more real. He has had three surgeries in the last 4 months. For Jackson this trip really has given him something to look forward to. He complies a little better at infusion. He has also been to disney world numerous times, but he still wanted to go there for his wish. I looked forward to reading about Londons plans!!!!!!!!!! My Jackson is 7, Which princess does she want to be?

 

[blmalloy]

You are right! It is so exciting, but so sad! Jackson's dr referred him. Then he sent me a copy of the paperwork he faxed in! Reading it was so sad! I know my little guy has been pretty sick! However I guess I just thought well it could worse... Reading the paperwork was devastating. Not that the dr has not told us all of it, but to read things like significant increased risk of morbidity. Well as you know it is just heartbreaking. Seeing it all on paper made it more real. He has had three surgeries in the last 4 months. For Jackson this trip really has given him something to look forward to. He complies a little better at infusion. He has also been to disney world numerous times, but he still wanted to go there for his wish. I looked forward to reading about Londons plans!!!!!!!!!! My Jackson is 7, Which princess does she want to be?

She wants to be Cinderella! My dream for her is to have her go to BBB and then Cinderella's Royal Table. That's exactly what she wished for, and I'm hoping her wish granters can pull it off!

The paperwork. I totally get you. I often think it could be worse, but then I have to remind myself that just because it isn't as worse as my imagination doesn't mean that this trial is any less painful. I can't even think about her MRI in September. She was lucky to get through this surgery with just the DI; so many things could go wrong. If they have to do surgery again; well...I can't handle the thought of that. I'll think of the Wish instead.

 

[blmalloy]

I contacted London's Wish Granters today just to check on progress. They told us we would get a call last week with our confirmation, but London's doctors hadn't signed off on her travel yet. That was done on Friday, so hopefully soon!


Krystal (her WG) asked what size London is "just in case" they get her a Cinderella costume.

 

[ember303]

She wants to be Cinderella! My dream for her is to have her go to BBB and then Cinderella's Royal Table. That's exactly what she wished for, and I'm hoping her wish granters can pull it off!

The paperwork. I totally get you. I often think it could be worse, but then I have to remind myself that just because it isn't as worse as my imagination doesn't mean that this trial is any less painful. I can't even think about her MRI in September. She was lucky to get through this surgery with just the DI; so many things could go wrong. If they have to do surgery again; well...I can't handle the thought of that. I'll think of the Wish instead.

You are so right!!!!! I will pray that her tumor is STABLE!!!!! Bless your heart momma!

 

[ember303]

I contacted London's Wish Granters today just to check on progress. They told us we would get a call last week with our confirmation, but London's doctors hadn't signed off on her travel yet. That was done on Friday, so hopefully soon!


Krystal (her WG) asked what size London is "just in case" they get her a Cinderella costume.

Jacksons dr called today and wanted to know if we needed anything put down for Jacksons wheelchair or if we where taking his. She was filling it out and faxing the travel paper today : ) So hopefully our dates will be confirmed soon! LOVE LOVE LOVE that she wants to go to see Cinderella and eat with her!!!!!

 

[mamaVonna]

Following along. Looking forward to seeing London's wish come true. Can't wait to see her dressed up as Cinderella! Wishing her and your family the very best

 

[jefmelmil]

Hi, I am so thankful that I found this board. Like you ladies, our daughter is a MAW kid. Katie has Kleefstra Syndrome, multiple GI issues, seizures, and developmental delays. I totally understand about "reading the paperwork". Katie's doctor told us in July that she had 3-5 years to live. I heard him but it was not until I read his MAW paperwork that I actually cried. Also, I can relate to the excitement and sadness feeling. I even feel guilty when I am excited for Katie and our family. However, the timing for this trip has been a blessing already for our family. I hope you don't mind if I follow along. We are a family of 9 and I am looking for tips and suggestions from other MAW families.

 

[mamaVonna]

Hi, I am so thankful that I found this board. Like you ladies, our daughter is a MAW kid. Katie has Kleefstra Syndrome, multiple GI issues, seizures, and developmental delays. I totally understand about "reading the paperwork". Katie's doctor told us in July that she had 3-5 years to live. I heard him but it was not until I read his MAW paperwork that I actually cried. Also, I can relate to the excitement and sadness feeling. I even feel guilty when I am excited for Katie and our family. However, the timing for this trip has been a blessing already for our family. I hope you don't mind if I follow along. We are a family of 9 and I am looking for tips and suggestions from other MAW families.

Hi! Welcome to the DIS! Have you found/posted on the wish trippers main board for wish trips? I'm awful at finding/posting links but give this one a try: http://www.disboards.com/threads/ma...tions-wish-trippers-unite-volume-six.3084932/

Many people have described their child's wish as an "unfortunate blessing". I understand feeling guilty but believe me-Katie, you, and your family deserves some joy, laughter, and happy memories. A Disney wish is a wonderful wish and please try to enjoy every single moment of planning; get your family excited and involved. The memories of your trip can start right now!!

Many of the newer DISers going on a wish trip are in a group on FB called Make a Wish Disney Trips. Come check us out, you will find answers to many of your questions and feel free to ask questions anytime!

 

[jefmelmil]

Thank you ! Thank you!! I will post on the "wish trippers" board as soon as I get the kids in bed. Also, thanks for the FB suggestion. I will be up late tonight-- the excitement is building!! Most of all thanks for the encouragement! If you could give me a link or several where you bought shirts, pins or other items, I would appreciate it. Oh and How do I get names and link to Pre-Trip Report on my post?

 

[jefmelmil]

Hi! Welcome to the DIS! Have you found/posted on the wish trippers main board for wish trips? I'm awful at finding/posting links but give this one a try: http://www.disboards.com/threads/ma...tions-wish-trippers-unite-volume-six.3084932/

Many people have described their child's wish as an "unfortunate blessing". I understand feeling guilty but believe me-Katie, you, and your family deserves some joy, laughter, and happy memories. A Disney wish is a wonderful wish and please try to enjoy every single moment of planning; get your family excited and involved. The memories of your trip can start right now!!

Many of the newer DISers going on a wish trip are in a group on FB called Make a Wish Disney Trips. Come check us out, you will find answers to many of your questions and feel free to ask questions anytime!

I just looked up the FB group you suggested and clicked "join" but no widow popped up. Do I need to be referred by someone? Or am I doing something wrong?

 

[jefmelmil]

It looks like I need 10 posts to submit Katie a pre-trip report, since I have already post almost 9 directly to you, I thought I would just let you be the winning post! Yay post 10. Tomorrow I will post Katie's pre-trip info. Thanks for answering my questions. Sleep sweet

 

[blmalloy]

Hi, I am so thankful that I found this board. Like you ladies, our daughter is a MAW kid. Katie has Kleefstra Syndrome, multiple GI issues, seizures, and developmental delays. I totally understand about "reading the paperwork". Katie's doctor told us in July that she had 3-5 years to live. I heard him but it was not until I read his MAW paperwork that I actually cried. Also, I can relate to the excitement and sadness feeling. I even feel guilty when I am excited for Katie and our family. However, the timing for this trip has been a blessing already for our family. I hope you don't mind if I follow along. We are a family of 9 and I am looking for tips and suggestions from other MAW families.

Hi! Thanks so much for following along with London! I'm so excited for your upcoming trip. The wish trips really are a blessing from the moment you find out; all of a sudden conversations switch from diagnosis to dreams. It has been lovely. I'm wondering what my family is going to talk about after its over, lol!

Have you found us on FB yet? Let me know if you need help!

Prayers and hugs to you and yours!

 

[blmalloy]

Hi all! Just thought I would give a little update!!!

First of all…. 57 days!!!!

We are all really excited! We started our official countdown at 91 days, and that seems like just a few blinks ago. Our next big event will be when the Wish Grantors actually give us our itinerary, which probably will be in a month or so. That's when things will really get real!

We have our flight times, which are perfect. We fly out early and get into Orlando around 1, which will give us plenty of time to get to GKTW and enjoy some afternoon playing before dinner. I know I'm going to cry that entire first day. I'll cry when the limo comes and when we board the plane. I'll cry when I see the volunteers waiting for us at the airport. I'll cry when we check in to GKTW, and I'll certainly cry that next day when we drive under that huge Disney Parks sign as we enter Disney. Needless to say, I'm packing waterproof mascara!

We have some really fun reservations lined up! MAW booked BBB for us, so my girls will be transformed into princesses the first day in the parks. The next day, the girls and I have a reservation at the infamous Cinderella's Royal Table!!! London's wish was to dress up like a princess and go into Cinderella's castle. I'm so excited that its actually happening! That reservation was ridiculously hard to get. Right now its only for the girls and I (3), but I'm hoping we can add 2 more at some point so her dad and brother can enjoy it with us. If not, that's fine. We also have a breakfast at Be Our Guest. Castles are her wish, and castles are what she is going to get!

 

[gwynne]

Exciting update, 57 days-won't be long!

 

[jefmelmil]

Awesome!! In the wave of a wand you will be in your chariot. Thanks for letting me tag along.

 

[jefmelmil]

Hi! Thanks so much for following along with London! I'm so excited for your upcoming trip. The wish trips really are a blessing from the moment you find out; all of a sudden conversations switch from diagnosis to dreams. It has been lovely. I'm wondering what my family is going to talk about after its over, lol!

Have you found us on FB yet? Let me know if you need help!

Prayers and hugs to you and yours!

I tried to get on the FB page but could not join. I clicked on the join button but another window did not pop up. I will try it again tonight.