Luke's Wish Trip May 16-22

[mlbarbian]

We are so excited to be going to Disney, and I am so excited to have found this board. There are so many knowledgeable people on here and it is so amazing that they give their time to help us less informed with our trips - Thank You.

We are leaving May 16th, and I am feeling so unprepared right now. We have a 4 year old (Luke) and an 18 month old (Madeleine). I am hoping for the best and planning for the worst, expecting many meltdowns.

We feel so fortunate to be going to Disney through the Make-A-Wish Foundation. I know Luke will have a truly magical experience and I am so excited for him.

I know I will have lots of questions, and I plan to do lots of reading on the boards here.

Thank you,
Michelle

[mlbarbian]

Here is a little about us. Luke was our first child. At 10 weeks, we took him to the pediatrician for his 2 month appointment. I was really dreading the SHOTS he would be getting. The doctor was doing his examination and spent a bit of time on his abdomen. He noticed that his liver was quite larger than it should be, so he sent us to Children's Hospital to have some tests done. No shots today (I think I would have preferred the shots) On this day, he had lots of blood drawn, urine tests, etc. We also met with a Gastroenterologist. He explained to us what some of the possibilities were. I remember him talking about the possibility of a liver transplant. At this point I began to realize the severity of the situation. The Gastroenterologist sent us for an MRI the following day, he also had more blood and urine tests. That afternoon, the doctor called me (my husband was not home from work yet), and said the following(which I will never forget) "We got the results of the MRI. He has Neuroblastoma, it's cancer. It's serious, you will be in our thoughts and prayers." He proceeded to tell me that we were meeting with the oncologist the following day. This was probably the worst phone call I had ever gotten, of course I broke down and called my husband. He was on his way home.
Everything happened very fast at this point. We met with the oncologists. Luke then had a liver biopsy and bone marrow biopsy done to determine the histology of the cancer (staging, etc.). The results were mostly favorable, however one of the factors came back undesirable, so he had to have 8 rounds of chemotherapy. He had to have surgery to have a central line put in. He had stage 4S Neuroblastoma. His prognosis was very good. He is now 4 years old, and you would never even know he was so sick.

[maroo]

Thank you so, so much for sharing your story with us!!!

Thanks for sending me the link! I will share it on the Wish Trippers Unite thread!

Do you know how to post pictures? If you would like?

You guys are leaving next week! I know you must be SOOO excited! It is a magical trip!

Have you guys been to Disney before?

[mlbarbian]

I am going to try posting some pics.

Here is the whole family at Easter. It's really hard to get a picture where everyone is cooperating, so this is the best we got:


Luke and Madeleine in the snow:


This is my favorite picture of Luke. He is with his blanket, with the bunny that I have sewn onto it. He sleeps with this thing every night, and this is exactly how he looks when he has it:


Here is Madeleine in her 1 year picture:

[maroo]

Oh, your kids are SOOOO precious!

I love the pics!!!

[kdzbear]

Your children are adorable! I am so glad that you get to go on a Disney Wish trip. I would be glad to answer any Disney questions you might have. I have traveled to Disney when my two littlest were the ages of your children now. I hope that Luke is in remission now. Great start to your report!

[that's nice]

Michelle,
I'll be following your PTR. Our DD3 cancer was discovered when she turned 1. Our pediatrician felt something in DD belly at her 1yr well visit. It was a whirlwind of a week for us. Our DD was diagnosed with a Wilms Tumor and had surgery to remove her kidney. She also had a central line and had 5 months of chemo which ended on August 14th 2007. She has been cancer free since her surgery.

I'm so glad that Luke is doing better! There is so much info here on the DIS.... and on the wish trippers thread. Don't be scared to ask questions.. there are so many people that are willing to help!

Tim

[BeckySob]

Welcome Michelle!

Your children are gorgeous! Thanks for sharing your story and the pictures. Pictures are always nice!! We love pictures!!

As you know, ask any question you may have. No question is too stupid to ask!

Have you been to DisneyWorld before? Will you be staying at GKTW?

[kmparrish5]

Welcome! Your trip is just around the corner. You leave to go home the day before we arrive. I am happy to hear that Luke is doing well now. Your children are adorable. I know they must be very excited about going to Disney. My kids can hardly stand the wait.....18 days and counting!

[Corrine 1973]

Your kids are sooooooo cute!

I am so glad that Luke is doing well and you will very soon be going to Disney World.

This will also be my families first trip to Disney World so we are in the same boat. We will be going in September. One thing I have learned in my Disney reserch is something cool for parents who have small children who can't go on rides that other people in the party want to go on. The CM will allow one adult to stay back with the infant/child while the others ride on the ride and allow that person to ride as soon as there party returns and not get in the back of any lines (though with a GKTW or MaW button there will not be long lines anyway.)

Can't wait to hear more and see some more great pics!

[MaryAz]

Congrats on your trip! Luke is quite a guy. We are going the same time as you are! I have not gone before but have planned for monthes so if ther is anything I can answer I would be happy to.

[josabbimommy]

Thank you for starting your pre trip report. When are you going home? We arrive in Orlando on the 22nd of May. I too am very excited. I have not heard from the wish organization but know someone who used to work there and she says they usually wait til the week before to give info.....so you should get something this week or early next. I would not hesitate to call them...as a matter of fact, I'm thinking of doing that myself with my son's trip.

[mlbarbian]

Well, the wish volunteer called tonight, yay!! They are coming over on Thursday night to give us all our info. It will be such a relief to have all the info (flight time, character meal reservation, etc) so I can start to really put our trip together. I don't even know if the character meal is a breakfast, lunch or dinner.

Here is what I know I want to plan for us at this point:
Magic Kingdom - at least one day
Universal - at least one day
Sea World - feed dolphins and maybe the clam/pearl dive
Epcot - we have to go at least a half day because my brother and his family were just there in January and have video of the Turtle Talkin with Crush, so my son already knows he wants to do that.
I can't remember which park the Disney cars are at, but we HAVE to go there, my son is obsessed (and also saw pictures from my brother's trip)

I know there are also activities some mornings and evenings at GKTW that I want to be there for.

I need to sit down and make some charts or something to organize my thoughts, I am such a visual person.

More to come, when I get more organized

Michelle

[MaryAz]

I made an Excel spreadsheet so I could see it all at once. Happy planning!

[mlbarbian]

Originally Posted by MaryAz

I made an Excel spreadsheet so I could see it all at once. Happy planning!

Could I see a copy of your spreadsheet? It sounds like it would be very useful.

Thank you