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

[jenny105]

We picked out a couple dresses out of their closet this weekend to decide which to take. They both got dress shoes (black patent shoes) in December and are so excited to wear them. They have heels on them and they both say they want to wear their "high heel" shoes on teh boat....

As for the flight, yea, I'm NOT crazy about the time AT ALL. I though someone told me you needed to be IN Orlando by 12 noon the day of departure but I don't remember who/where I got that tidbit. I am determined not to stress, since this is supposed to be FUN AND Disney was the one that booked our flights so it'll have to be ok, right????

I think I used to say the same thing about my black patent shoes when I was a little girl!

I'll keep my fingers crossed that there are no delays and you're on that ship ASAP!

 

[iluvmyfamily]

Ahhh...cute pictures of the girls!! Awesome "Big Give" gifts they received! Wow...12 days before you all leave for that wonderful magical cruise!!!!
Best of luck to you with your flight and hope all goes well.

 

[LITTLEKID58]

Awesome pics txs for sharing..

 

[allears]

I've been following along and wanted to say thanks for sharing your story. You'll be surprised how many people you've touched by the time you are done. And I wanted to quickly (as quickly as possible) relay a story that tells how wonderful MAW is and DCL and these boards. Strangely enough our MAW story is about our Goddaughter who had - you guessed it - a Wilm's tumor. She was diagnosed late in the time to get it - she was nearly ten, in 2003. But by the time they found out she had it, one kidney was completely consumed and the tumor was huge. They opened her up immediately, and then closed her up again immediately as it was too large to deal with before chemo. Thankfully the other kidney was not affected. After a shorter amount of chemo than they thought they would need, they operated and removed a 9x9x10 in. tumor. Did I mention huge? She went through chemo and radiation and infections etc etc. But was pronounced NED a little over a year later, right before her MAW cruise. Well, we have been cruising for years with DCL and were actually leaving on a 7 day cruise the day before her 4 day. We were so sad that it didn't quite work out that we could have switched things around to be together. Well, then came hurricane Jeanne. We left for our cruise only to find out it wasn't going to leave until Monday! and the MAW cruise was going to be seriously curtailed. I suggested that they check with MAW to see if they could get transferred to the now 4 day cruise we were on so they wouldn't miss so much of their cruise time and then we could be together. Well MAW said no problem, but there were no cabins available. So we alerted the boards. If anyone was going to cancel because of the hurricane, could they designate their cabins for this family. DONE! Almost immediately someone gave them their rooms. Before we knew it everything was set. Except now every which way to get to FL from SC (where our Goddaughter lives) was being blocked by the hurricane. Airports were closing. Roads were bad. We kept posting on the boards as challenges came up. Finally we all resigned ourselves that they couldn't get there. Then Saturday night at 11 pm our friends got a call. It was DCL! They had been following the thread and said they were going to get them on that ship! They arranged the transportation and actually got them there through all that mess! It was an amazing thing to watch all those people come together to make Annie's wish come true. Which actually had been that we could ALL go on a cruise together! So the Hurricane that brought misery to so many actually turned out to be a real blessing for our familes! Annie is still today NED and a blessing to all those around her. I pray for your happy ending as well! May her smile light up the world in ways you never before even dreamed! Have a magnificent cruise!

 

[iu97alum]

I'm so glad they liked their goodies - thanks for posting these wonderful pictures! Your little princesses just light up the world with their smiles. Hope your cruise is just amazing!

Awww... it's because of you that they smiled! Thank YOU!!!

I think I used to say the same thing about my black patent shoes when I was a little girl!

I'll keep my fingers crossed that there are no delays and you're on that ship ASAP!

I loved dressy shoes and DH rolls his eyes everytime the girls talk about dressing up.

Reminds me of something from the other night. Emy has been getting into having her nails painted. Earlier I mentioned getting my nails painted before I leave and she asked if she could get hers done too. I said of course. So the other night at dinner she said, "Mommy, we're still going to get our nails done before we leave, right?" DH was just rolling his eyes and saying NO! She's too young!!! Doesn't he realize I'm training them to be princesses EARLY in life?

Ahhh...cute pictures of the girls!! Awesome "Big Give" gifts they received! Wow...12 days before you all leave for that wonderful magical cruise!!!!
Best of luck to you with your flight and hope all goes well.

Thanks so much!!! We are quite blessed.

Awesome pics txs for sharing..

 

[iu97alum]

I've been following along and wanted to say thanks for sharing your story. You'll be surprised how many people you've touched by the time you are done. And I wanted to quickly (as quickly as possible) relay a story that tells how wonderful MAW is and DCL and these boards. Strangely enough our MAW story is about our Goddaughter who had - you guessed it - a Wilm's tumor. She was diagnosed late in the time to get it - she was nearly ten, in 2003. But by the time they found out she had it, one kidney was completely consumed and the tumor was huge. They opened her up immediately, and then closed her up again immediately as it was too large to deal with before chemo. Thankfully the other kidney was not affected. After a shorter amount of chemo than they thought they would need, they operated and removed a 9x9x10 in. tumor. Did I mention huge? She went through chemo and radiation and infections etc etc. But was pronounced NED a little over a year later, right before her MAW cruise. Well, we have been cruising for years with DCL and were actually leaving on a 7 day cruise the day before her 4 day. We were so sad that it didn't quite work out that we could have switched things around to be together. Well, then came hurricane Jeanne. We left for our cruise only to find out it wasn't going to leave until Monday! and the MAW cruise was going to be seriously curtailed. I suggested that they check with MAW to see if they could get transferred to the now 4 day cruise we were on so they wouldn't miss so much of their cruise time and then we could be together. Well MAW said no problem, but there were no cabins available. So we alerted the boards. If anyone was going to cancel because of the hurricane, could they designate their cabins for this family. DONE! Almost immediately someone gave them their rooms. Before we knew it everything was set. Except now every which way to get to FL from SC (where our Goddaughter lives) was being blocked by the hurricane. Airports were closing. Roads were bad. We kept posting on the boards as challenges came up. Finally we all resigned ourselves that they couldn't get there. Then Saturday night at 11 pm our friends got a call. It was DCL! They had been following the thread and said they were going to get them on that ship! They arranged the transportation and actually got them there through all that mess! It was an amazing thing to watch all those people come together to make Annie's wish come true. Which actually had been that we could ALL go on a cruise together! So the Hurricane that brought misery to so many actually turned out to be a real blessing for our familes! Annie is still today NED and a blessing to all those around her. I pray for your happy ending as well! May her smile light up the world in ways you never before even dreamed! Have a magnificent cruise!

WOW!! What a WONDERFUL story!! I LOVE LOVE LOVE hearing stories like that. Especially today (see next post). THANK YOU for sharing and may she continue to be NED!!

 

[iu97alum]

11 Days to go and I'm a little stressed.

Today is Emily's 3 month check up and renal scan. Because of her predisposition to tumors, her follow up protocal is a little different than most Wilms patients. Instead of CT, she has an MRI. Well, for a CT, Emy can stay still but an MRI she must be sedated. That is what always gets me in a tizzy. DH and I always seem to go through some sort of discussion on who's taking Emily to her tests because when she wakes up, she wants me. However, we do try to switch off when we don't have anyone to watch our youngest. Today is my day to stay home. Our friends who can watch Sami are going to be at the hosptial so I'm going to watch Sami and pick up her son this afternoon from school. She is having the whole shebang today: chest xray, CT (not sure why?) and MRI plus blood work starting at 1:30. LOOOOONG day for her as she has to be NPO (since 7AM). Since she had her port out, she gets quite stressed about having an IV placed. We're working on getting her some sort of sedative to help ease her anxiety. Just waiting now...

On another note, MAW contacted me and are planning her send off dinner for next (1/16) at her favorite restaurant, Babe's Chicken House. We haven't told her yet as I'm waiting to find out more. Good thing is my MIL comes in that afternoon so she'll be able to come too!!!

One thing that bothers me is we won't get our travel docs until that night. As a uber OCD planner, that makes me nervous because what if something is wrong? It'll be a Friday night with little to nothing we could do before we leave on Sunday. Do I ask our granters for the travel docs now and they can hold the spending money and wish packet for Emily until the dinner?

Also, to get to the airport, we'll be given a ticket for the Park 'N Fly. We've never done that before and I'm conerned about logisitics and leaving our car somewhere strange. I'll need to look into it.

 

[Alice_on_WONDERland]

Hello!

I know today is going to be a long and stressful day for both you and your daughter, that's why I'm sending prayers your way! I, myself have been through the never-ending sequence of MRI/CT/chest x-ray/bloodwork headache and even I (at nearly 30 years old) can't handle it! Your sweet little daughter is so brave. And I know you'll be brave for her.

The best remedy for you right now is to continue the obsessive trip planning! That will keep your mind off all the medical junk, right?!

Sending prayers and hugs your way...

 

[podsnel]

Wishing you a quick and happy day today- you've got my thoughts and prayers for all good things!

Ellen

 

[TiggerTails57]

Hope today goes smooth
Best wishes to Emily.....

 

[allears]

Just sending prayers, hugs and pixie dust for as smooth a day as possible! And yes, OCD planning is a great 'therapy'!

 

[mom2lilnick]

One thing that bothers me is we won't get our travel docs until that night. As a uber OCD planner, that makes me nervous because what if something is wrong? It'll be a Friday night with little to nothing we could do before we leave on Sunday. Do I ask our granters for the travel docs now and they can hold the spending money and wish packet for Emily until the dinner?

Also, to get to the airport, we'll be given a ticket for the Park 'N Fly. We've never done that before and I'm conerned about logisitics and leaving our car somewhere strange. I'll need to look into it.

I am a planner as well, we were told we wouldn't get anything until Nick's party either.. altho Nick's party is Friday and we don't leave until the 19th so there was more room to plan. I never did actually say anything but the couple of times that I met our WISH coordinator we talked about me needing to "plan" out every detail and one day she just emailed me Nick's itinerary. She said.. she knew how much I needed something to plan off of so here ya go. I love her.

I don't think it will hurt to ask for an advance copy. We were told just to make sure to not use any of the flight numbers or anything off it since they can (and have) changed.

 

[iu97alum]

I am a planner as well, we were told we wouldn't get anything until Nick's party either.. altho Nick's party is Friday and we don't leave until the 19th so there was more room to plan. I never did actually say anything but the couple of times that I met our WISH coordinator we talked about me needing to "plan" out every detail and one day she just emailed me Nick's itinerary. She said.. she knew how much I needed something to plan off of so here ya go. I love her.

I don't think it will hurt to ask for an advance copy. We were told just to make sure to not use any of the flight numbers or anything off it since they can (and have) changed.

I emailed them and unfortunately, they will not release the docs until the party (we have to sign for them with the spending $) AND the travel info will not be ready until then! Oh well! I have our flight info so I just have to have faith that everything is right....

 

[mom2lilnick]

oh that is too bad. We don't have everything.. just the basics, GKTW info and park info. We don't have $$ info or anything.

 

[2cutekidz]

I hope things go smoothly for you today.

On a bright note - I dropped a package in the mail for your princesses. My Emily (6) helped pick out all of the fabrcs (I gave her choices of course, who knows what she would have come up with on her own!!) Hopefully you will have them by Saturday!!

 

[perdidobay]

I hope your family has a Wonderful Cruise....you all deserve it so much!

 

[maroo]

I emailed them and unfortunately, they will not release the docs until the party (we have to sign for them with the spending $) AND the travel info will not be ready until then! Oh well! I have our flight info so I just have to have faith that everything is right....

That would freak me out. I think that MAW thinks that the parents should not have to plan anything...that all will be taken care of by MAW...so that the parents "don't have to worry about anything"...At least that is what they told me. I got by asking stuff since I was her "caregiver"... But it would have driven me crazy not to know. We had that stuff planned so far in advance! We had to coordinate with her school, too, on the timing, etc.

Let us know how all of that worked out!!!!

 

[iu97alum]

NED. 'nuff said. Be back later with big give pictures.

 

[Petals & Pixie Dust]

NED. 'nuff said. Be back later with big give pictures.

thank you so much for sharing your story! I can't wait to see her give pics and her TR!

 

[iu97alum]

oh that is too bad. We don't have everything.. just the basics, GKTW info and park info. We don't have $$ info or anything.

I know, I'm NOT going to stress this week. I'm going to enjoy packing all the wonderful big give stuff!!

I hope things go smoothly for you today.

On a bright note - I dropped a package in the mail for your princesses. My Emily (6) helped pick out all of the fabrcs (I gave her choices of course, who knows what she would have come up with on her own!!) Hopefully you will have them by Saturday!!

Thank you!! OMG! I will post pictures very soon but WOW!

I hope your family has a Wonderful Cruise....you all deserve it so much!

Awww.. thanks. I just hope it's all we want it to be, you know?

That would freak me out. I think that MAW thinks that the parents should not have to plan anything...that all will be taken care of by MAW...so that the parents "don't have to worry about anything"...At least that is what they told me. I got by asking stuff since I was her "caregiver"... But it would have driven me crazy not to know. We had that stuff planned so far in advance! We had to coordinate with her school, too, on the timing, etc.

Let us know how all of that worked out!!!!

Thanks. We'll get all our "stuff" on Friday at her party. She's very excited. She asked me tonight that since it was her party could she get whatever she wanted? I asked if that meant dessert (we rarely get it!!) and she said yes. What do you think I said????

thank you so much for sharing your story! I can't wait to see her give pics and her TR!

Thanks for reading. Pictures coming right up!!