Princess Emily's MAW Cruise TR - UPDATED with Day 1 Pics

[iu97alum]

Thanks for sharing Emily's story. She is so strong. I cried thru it. I have a friend (lol, an internet friend) who's 8 month old baby girl had bilateral wilms as well, she went to St Judes and is now in remission! Go Kelly!

They live close to WDW and we hope to get to meet them during Nick's MAW trip.

I can't wait to hear more of your PTR.

Another Bilateral? Wow! So glad she's doing well!!! Does she have a caringbridge site? I'd love to visit. Not too many bilateral kids out there.

AHA!!! Found you. So glad to see you got your ptr on it's way. Your daughters are beautiful(clearly they get it from their mom!) I can't wait to read more about your family and your plans
...t.

Thanks so much!! The girls are a really good mix of us I think but am really glad they got the "girly" gene from me!! It's all lipgloss, dresses and bows!

Thanks for sharing your story.....

Sending pixie dust for tomorrows surgery.

Thanks so much for the pixie dust! I think it helped!

oh Dana. I cried and had chills as I read your story and can identify with so much of it. I can't tell you how much I hate that our children have to go through this. I swear that when AJ is cured (I refuse to think differently) I am going to do everything I can to fight for a cure and to bring more awareness to Childhood Cancer.

Your trip sounds fabulous and Emy (your whole family) is so beautiful! I hope it's ok to keep you in my prayers!

CANCER SUCKS doesn't it? No way around it! Have you joined PAC2? (Parents against childhood cancer)? It's a great site and the site owner has a great plan of action to bring more awareness for 2009!

 

[camarks1234]

CANCER SUCKS doesn't it? No way around it! Have you joined PAC2? (Parents against childhood cancer)? It's a great site and the site owner has a great plan of action to bring more awareness for 2009!

Yep and we're a team on Team Unite as well.

I'm so excited for you!!!! We haven't been told what staterooms they booked for us and I don't know if I should ask, but hearing about yours makes me wonder! We are flying out early the morning of our cruise as well. We live an hour and a half from the airport so they're going to put us in a hotel that night before. Now that you've mentioned flight delays I'm nervous! Haha! I don't know what to tell you.

We have an 8 and 13 yo so we have set our sights on the Atlantis Aquaventure and they are super pumped for that. I don't know if it would be as fun for younger kids or not as I've never been there. Maybe someone else will chime in.

 

[macntosh]

We went out to dinner to her favorite restaurant, Babe's Chicken House, to celebrate and watch her do the Hokey Pokey!

Love Babe's and I will have to bring my Wish girl over to the Dallas Office on one of those art day's. It would be nice to meet a family so close.

From the time you met with your wish granters, how long did it take this local office to give you a tentative date for your trip?

I'm hoping that the announcement of Pirate and Princess Parties, one of Mya's big wishes will help them seal a date now.

 

[lvstitch]

Thanks for sharing. This is why I donate almost exclusively to MAW. They are such a wonderful organization.

 

[mom2lilnick]

Another Bilateral? Wow! So glad she's doing well!!! Does she have a caringbridge site? I'd love to visit. Not too many bilateral kids out there.

She does have a cb site but it is passworded.. I will ask her mom if it is okay for me to give it to you.

 

[iu97alum]

Love Babe's and I will have to bring my Wish girl over to the Dallas Office on one of those art day's. It would be nice to meet a family so close.

From the time you met with your wish granters, how long did it take this local office to give you a tentative date for your trip?

I'm hoping that the announcement of Pirate and Princess Parties, one of Mya's big wishes will help them seal a date now.

Well, we were a little different as after her wish, we put planning on hold because of her surgery. We waited until after her surgery (early sept) to give them the green light to plan (we asked them to plan for 2009 since she'd have her surgery 11/4 and we wanted plenty of time to heal!). So I guess it took about 6 weeks?

Thanks for sharing. This is way I donate almost exclusively to MAW. They are such a wonderful organization.

How wonderful! DH and I have decided when this is all said and done and Emy is in remission, we're going to become Wish Granters!

She does have a cb site but it is passworded.. I will ask her mom if it is okay for me to give it to you.

Sent you a PM. Emy has a caringbridge site too if she wants to take a look at ours first before she gives her site out to a total stranger.

 

[tinytreasures]

glad I found you
your little one has had a long road
I can't wait to hear more about her trip

 

[Khalana]

I really thought I had written a post here, but I guess I didn't! Your little Emily is SOOOOO sweet!! What a cutie!

You guys have certainly been through a lot...
But it's so exciting that you are getting to go on a Disney Cruise!!!

I look forward to reading all about your plans and trip!!

 

[i<3castawaycay123]

That is an amazing story and thanks so much for sharing. When Emily said Disney boat I had the biggest smile on my face. I have been on the cruise 3 times (my 4th next year) and I hope that your whole family has a great time! You guys are definitely in my prayers and I hope that Emily gets weel SOON!!!

 

[Hschlink]

Hello! I’m so glad that I came across your thread and was so very happy to read your story because our 3-yr old son was also diagnosed with a Wilms’ tumor and he is also going on a MAW Disney cruise….AND it’s in January too! We are leaving Jan. 11th…one week before you go!!! Here is some info about our son, Carter, and the link to his caringbridge.org page:

On May 14th of 2007 my husband and I took our son Carter, a 20 month old energetic toddler, into our Mayo family doctor because we were concerned with a large mass on the left side of his abdomen. I felt in my heart that there was something terribly wrong. Our family doctor examined his abdomen and agreed with us that there was definitely something “not right”. A short time later Carter was scheduled for an x-ray, an ultrasound, blood work, and a CT scan.

Soon after the CT was completed the doctors finally disclosed the diagnosis. We didn’t know what to say, we had never herd of a Wilms’ tumor, but then the doctor said something that made frightening sense to us – “it’s kidney cancer.” There was a moment of desperation and chaos as if the world was crumbling down on us. You hear about stories, but as a mother you are never prepared to see your child suffering, living through what feels like a death sentence, our doctor said the words that literally changed our lives.

We spent the next week in a whirlwind of doctors, nurses, forms to fill out, questions to answer and people to call. Carter had a grueling six hour long surgery one week later to remove a very large tumor, his left kidney, and several lymph nodes. The tumor was so large it filled the entire left side of his abdomen and a portion of his right side. Carter sailed through the surgery with minimal complications. Tests on the tumor showed that it was a stage II; however, all of his lymph nodes were negative for cancer.

Soon after we were released from the hospital we were back again to insert a port-a-cath, a device that is placed under the skin to provide intravenous access for chemotherapy. And so we began the 6-month protocol to treat Carter’s cancer.

Although his journey to being “cancer free” has just begun we have so much to be thankful for. Kyle and I both believe that he is young enough that he will not remember most of what is happening to him. Even though he has to deal with this terrible ordeal he amazes us every day. We truly thank God for giving us the privilege of being his mommy and daddy. Our lives would be empty with out Carter and his twin sister, Breah, who also has kidney problems. People ask me why I never complain, and I simply tell them that they just make me too darn happy.

Make no mistake about it, cancer is a ruthless disease. But even cancer has its limits. It cannot and it will not destroy our faith in the goodness of God and the kindness of others.

We thank you for taking the time to read about Carter’s story.
http://caringbridge.org/visit/carterschlink

I can't wait to hear about your trip!!!

 

[iu97alum]

Hello! I’m so glad that I came across your thread and was so very happy to read your story because our 3-yr old son was also diagnosed with a Wilms’ tumor and he is also going on a MAW Disney cruise….AND it’s in January too! We are leaving Jan. 11th…one week before you go!!! Here is some info about our son, Carter, and the link to his caringbridge.org page:

On May 14th of 2007 my husband and I took our son Carter, a 20 month old energetic toddler, into our Mayo family doctor because we were concerned with a large mass on the left side of his abdomen. I felt in my heart that there was something terribly wrong. Our family doctor examined his abdomen and agreed with us that there was definitely something “not right”. A short time later Carter was scheduled for an x-ray, an ultrasound, blood work, and a CT scan.

Soon after the CT was completed the doctors finally disclosed the diagnosis. We didn’t know what to say, we had never herd of a Wilms’ tumor, but then the doctor said something that made frightening sense to us – “it’s kidney cancer.” There was a moment of desperation and chaos as if the world was crumbling down on us. You hear about stories, but as a mother you are never prepared to see your child suffering, living through what feels like a death sentence, our doctor said the words that literally changed our lives.

We spent the next week in a whirlwind of doctors, nurses, forms to fill out, questions to answer and people to call. Carter had a grueling six hour long surgery one week later to remove a very large tumor, his left kidney, and several lymph nodes. The tumor was so large it filled the entire left side of his abdomen and a portion of his right side. Carter sailed through the surgery with minimal complications. Tests on the tumor showed that it was a stage II; however, all of his lymph nodes were negative for cancer.

Soon after we were released from the hospital we were back again to insert a port-a-cath, a device that is placed under the skin to provide intravenous access for chemotherapy. And so we began the 6-month protocol to treat Carter’s cancer.

Although his journey to being “cancer free” has just begun we have so much to be thankful for. Kyle and I both believe that he is young enough that he will not remember most of what is happening to him. Even though he has to deal with this terrible ordeal he amazes us every day. We truly thank God for giving us the privilege of being his mommy and daddy. Our lives would be empty with out Carter and his twin sister, Breah, who also has kidney problems. People ask me why I never complain, and I simply tell them that they just make me too darn happy.

Make no mistake about it, cancer is a ruthless disease. But even cancer has its limits. It cannot and it will not destroy our faith in the goodness of God and the kindness of others.

We thank you for taking the time to read about Carter’s story.
http://caringbridge.org/visit/carterschlink

I can't wait to hear about your trip!!!

WOW!! Welcome! have you done a PTR yet? You should!! How many nights are you going? He's NED, right? Have you passed the two year mark? Emy finished her chemo in March but she still had some surgeries to repair some complications. She's all good now. We just live in three month increments, as you know. How awesome ya'll are doing a cruise here. I'm so excited becase I haven't seen a lot of wish cruises around here so we'll add to the mix! Emily has a CB site and it's emy if you want to check it out. I'm off to check out carters!

 

[Hschlink]

Thanks for the welcome! I haven’t started a PTR, but it’s in the “works”. We are booked on the 4-night Wonder from Jan. 11th-15th. They are flying us out the day before the cruise…but I suspect that has a lot to do with living in MN and the unpredictable weather in January!! Thank God he is NED…last month was his 1-yr anniversary since his last chemo treatment. Even more amazing is that we’ve had almost no complications or problems since then…he is such a trooper! I definitely know what you mean by living in three month increments!!! I’d love to check out Emy’s CB site!! Hopefully you’ll see Carter’s PTR on the boards soon!!!

 

[iu97alum]

Thanks for the welcome! I haven’t started a PTR, but it’s in the “works”. We are booked on the 4-night Wonder from Jan. 11th-15th. They are flying us out the day before the cruise…but I suspect that has a lot to do with living in MN and the unpredictable weather in January!! Thank God he is NED…last month was his 1-yr anniversary since his last chemo treatment. Even more amazing is that we’ve had almost no complications or problems since then…he is such a trooper! I definitely know what you mean by living in three month increments!!! I’d love to check out Emy’s CB site!! Hopefully you’ll see Carter’s PTR on the boards soon!!!

WOOO HOO! Maybe you can email me when you get back to give me some tips since we leave three days later! They're not flying us out the night before. Apparently Disney says you have to be in Orlando by 12P and the 7:30A flight theyr'e going to book us on arrives at 11:10A so no flying the night before. I'm kind of bummed b/c that makes a SUPER long day for a 3 & 5 yo (having to be up at 5:30A to get to the airport by 6:30 for a 7:30A flight..) You're half way there! I was told once you get to the 2 yr mark the rate of reoccurance drops significantly!! Whoo Hoo! Because Emy had bilateral and has nephrogentic rests, she has to have MRI's every three months. We're two scans in NED, 6 to go! April 10 2010 she'll be two years OT but who's counting???

Have you joined the meet thread for your cruise? I'm trying to get some folks involved in a FE gift exchange on mine. I think the kids would love to help out and come back to the cabin seeing cool little gifts/trinkets each time.

 

[LivingtheWDWdream]

What a wonderful wish trip you will have your dd's are adorable and I will be looking forward to how the cruise goes and all the magic I hope finds its way to you!

 

[LindaBabe]

Wo - I cried buckets over that beginning - poor Emily! Poor mom and dad! You guys ALL deserve this trip!!!

With little kids, I'm not sure I'd bother with an excursion in Nassau. Either grab a cab and go to Ardestra gardens (a little zoo, with cute photo ops) or just walk over and listen to the steel band in the festival center and then back on the ship to enjoy the pool etc without so many people there.

Hugs to you all!

 

[oklamomof4boys]

Now that my trip is over- I have time to read a few more pre-trip reports ( actually, I don't have much more time, but I can't get enough of MAW and Disney!)

We went on a 4 night cruise the summer of 2007. It was magical- we thought it would be our only one but we loved it so much we booked another one! You get a discount if you rebook onboard. We booked out as far as we could and then moved our reservations later once the 2009 dates came out ( We are going Dec. 26, 2009 for a 7 night-gave us 2 1/2 years to save for it!) Originally Nathan's wish was to go on another Disney Cruise, but in OKlahoma, the only Disney Cruise they will do is the 3 night so he went with WDW.

Too bad they won't let you fly in the night before. I'm sure you will be fine- the boat doesn't leave until 4:00 or so, but they let you on the boat around noon. We were not impressed with Nassau at all. We wish we had just stayed on the boat that day. There is so much to do on the boat. You will have such a wonderful time. You have been through so much and deserve a wonderful vacation.

Carol

 

[ShawnaH]

What a beautiful family you have! Thank you for sharing your story with us, i cant wait to read more

 

[iu97alum]

What a wonderful wish trip you will have your dd's are adorable and I will be looking forward to how the cruise goes and all the magic I hope finds its way to you!

Aww.. thanks so much! We can hardly wait!

Wo - I cried buckets over that beginning - poor Emily! Poor mom and dad! You guys ALL deserve this trip!!!

With little kids, I'm not sure I'd bother with an excursion in Nassau. Either grab a cab and go to Ardestra gardens (a little zoo, with cute photo ops) or just walk over and listen to the steel band in the festival center and then back on the ship to enjoy the pool etc without so many people there.

Hugs to you all!

Thanks Linda! I'm leaning towards this as well. I want to experience the island a little bit but we'll probably spend most of the day on the ship. Since DH worked at the zoo, my kids are definitely animal lovers and have had so many perks because of it (and so have I!).

What a beautiful family you have! Thank you for sharing your story with us, i cant wait to read more

Aww... thanks. I'm pretty biased but I think they're cute too.

 

[iu97alum]

As of today, we have FORTY EIGHT days until Emy’s trip! OMG! I can't believe it's so close!!

Here's some cool updates!

Emily was selected for THE BIG GIVE!!! Whoo hooo! Emily is beyond excited about this. She keeps telling me to tell the Big Give group her favorite characters (she keeps adding to her list daily!). She and her sis love to do a “fashion show” (ie try clothes on that Mom doesn’t let them wear every day) and cannot wait to have new stuff to show off!.

On another note, I’ve started going through Emy’s wardrobe to see what fits and what doesn’t. Since she has been OT (off treatment), she has gained back her weight. I didn’t realize how small she really was until recently when we were trying to find warm climate clothes to fit her. She has no shorts that fit!!! Or a swimsuit for that matter! I have scoured our local malls, stores, etc but not avail! I ordered some stuff from Lands End but the swimsuit didn’t fit. The shorts barely fit (a 6x) and now I’m back to seeing if I can order the next size up and return the other ones. I wonder what I am going to do about the swimsuit. I may have to wait and buy one on the boat!

We don’t have plane flights yet (EEK!). I talked to our granters today and Disney is booking our flights and they usually book them a month in advance (19 days then to wait but who’s counting? ). My MIL has changed her mind is going to fly from here out to Orlando with us so now I have to get her a one way flight (she’s going to stay in FL after the trip). I’m told Disney USUALLY books the first flight on American… Anyone want to place bets that holds true after I book my MIL’s ticket???

DH and I have been quite emotional this past week. He and I were lucky to have a “date night” and we went to go see Jeremy Camp debut his new album. We didn’t have just any seats, they were FRONT ROW! It was amazing and just listening to his new songs, especially “There will be a day” made me quite emotional. Jeremy Camp and Casting Crowns’ albums kept me sane during Emily’s treatment (I discovered them right BEFORE Emily was diagnoised!). Their music is amazing and has touched me AND DH.

Just to think this time last year, Emily was in a much different place. It was right after her tumor removal surgery and she was in such a dark, unhappy place. Very little laughter, few smiles, ever seem to come from her. Contrast that with this years smiling, giggling little girl just made me realize how blessed we are.

Oh, and MAW contacted us a few weeks ago and asked if Emily would enjoy the ballet. She and her sister both LOVE dance and we immediately said yes. We’ve been given the opportunity to take her to see the Nutcracker (an abbreviated child friendly version) this Saturday. To top it off, she also gets dinner and will meet the cast afterwards! WOW!


Here are some recent pics of Emily riding her bicycle

and Sami being "cool"

Hopefully I’ll have more to post after her big ballet event!!

 

[mom2lilnick]

Awwww.. love the new pics. I am jealous about Jeremy Camp and front row.. how amazing. I am going with some ladies from church to see Point of Grace on the 12th and I am very excited about that!