MAW Magical cruise for AJ

[camarks1234]

Back Story:
Our world changed forever March 17, 2008. AJ had been experiencing migraine headaches for several weeks. The morning of the 17th he seized and was rushed to the ER where they life-lined him by helicoptor to Riley Hospital in Indianapolis. He had a brain tumor that had burst near the brain stem.

Lots of miracles happened Monday. Chris & I were in Las Vegas for business and had to rush back at the mercy of the airline. We finally got to the hospital around 9:00 that evening. Luckily AJ was in Gods hands that day and some very wonderful surgeons.

7 months later with 4 surgeries, 31 radiation/chemo combo treatments behind us we have embarked on his mait. chemo routine. We have 6 cycles of that. 5 down and 1 to go. (It was a diagnosis of Medullablastoma btw)

He is doing well. His last MRI came back with just a ghost of something, hopefully just scar tissue. They were able to remove approx. 95% of the tumor with surgery back in March/April.

We are supposed to be done with his chemo in December (what a great Christmas present!) His last MRI in October showed no changes. Praise the Lord!


Onward! We received the good news a couple months ago that AJ had been approved for his Make A Wish, which is a 4 night 5 day Disney Cruise. They talked a lot to him and told him he might be happier going to DW because it would be a longer trip for him, but he has been enthralled with ships and pirates for quite some time thanks to Pirates of The Carribean! :) We went to DW in 2004 and he saw the magnificent Disney ships in port at that time as well, so I don't know if that was an influence or not.

I guess I should give you the cast, right? I'm new here so I don't know if I'm doing this right. :) (are we supposed to pick characters?)

AJ (age 8 - wish child), would like to be Pluto (I think literally - he was pretending to be a dog today when the nurse was checking his breathing) :)
Chris (Dad) would have to be Donald Duck
Austin (13 yo brother), maybe Grumpy dwarf? :) J/k, might have to come back to him.
Mom (me), AJ says Minnie Mouse (I don't think I'm that cute though) :)

AJ and I
http://www.mcgreevymarksphoto.com/images/blog/xstyandaj_selfport.jpg

AJ and Chris
http://www.mcgreevymarksphoto.com/images/blog/ragball/HTRT_0055.jpg

Brother Austin (taken this summer at a friend's pool)
http://www.mcgreevymarksphoto.com/images/blog/aj/oakes2.jpg

My current fave picture of AJ with Lucy (his special dog that has helped him through a lot of this. We got her for him in June after radiation treatments were over)
http://www.mcgreevymarksphoto.com/images/blog/aj/ajlucy_oct08.jpg


We will be setting sail on Feb 1, 2009! (if all goes as well of course). We have heard they may pick us up and take us to the airport in a limo, so that has the boys twittering as well.

That is all for now. AJ and I are in the hospital right now getting his 5th round of chemo and fun in the sun seems a long way away. Any advice offered we would love as we're new to cruising. We already reserved the Atlantis water adventure as our Naussau expedition.

Chris & Austin plan on parasailing at castaway cay. AJ and I pretty much just want to relax on the beach there.

More soon.

[HeatherSue]

You've been through some really tough times.:hug: I'm glad AJ's chemo is almost done and that you've been granted a wish!!

I'll be at Disney from Feb 3-10, but not a cruise. So, we'll probably miss each other.

How old is AJ?

[iu97alum]

Woo whooo! Another cruise wish tripper!! We're going in January! I'm so excited! Can't wait to hear more!

[camarks1234]

Oops, forgot to include AJ's age! He was 7 in March when he was diagnosed and turned 8 in April.

[camarks1234]

I read somewhere there is a pirate party at sea one night. I am going to try to find some fun pirate stuff for the boys to wear for that.

[oklamomof4boys]

You will have such a wonderful time! We went on a 4 night cruise Summer of 2007. Nathan was 8 when we went and had an absolutely wonderful time. My older boys were 10, 12 and 15- they all loved it to. In fact we booked another one while on board for NYE 2009- it will take us that long to save up for it!

Nathan's first wish was to go on another Disney cruise- but our chapter would only do the 3 night cruise. So he opted for the WDW trip.

Yes, there is a pirate night/party. Some even dress up for dinner ( we did). There is more food than you can possibly imagine! Something that my boys thought was really cool is that room service is FREE ( they do encourage you to give them a small tip- a dollar or so)! We never get room service so they thought this was really cool. Also, at dinner you can get a Roy Roger ( coke with cherry) or Shirley Temple ( sprite with cherry) for free- the waiters remember what drink you like and will automatically bring it each dinner- and they would load them up with cherries. My boys were in heaven! When I thought Nathan's wish trip would be a cruise, I read a couple of trip reports from cruise wish trips and they sounded very magical!

[Khalana]

Hi Christy,
What a great start to your PTR!! :thumbsup2

AJ sure has been through a lot. :sad2: Too much for a little boy. :hug: I love his smile, though, full of charm. :lovestruc His puppy is so cute too. :)

I think you'll have a great time on your cruise!!! :woohoo: I wonder if there are any books that specifically talk aobut the Disney Cruises?? I know that there's a board on here about it, maybe the posters there would be able to give you more info. :)

I look forward to hearing all about your adventures!! :)

[oklamomof4boys]

Hi Christy,
What a great start to your PTR!! :thumbsup2

AJ sure has been through a lot. :sad2: Too much for a little boy. :hug: I love his smile, though, full of charm. :lovestruc His puppy is so cute too. :)

I think you'll have a great time on your cruise!!! :woohoo: I wonder if there are any books that specifically talk aobut the Disney Cruises?? I know that there's a board on here about it, maybe the posters there would be able to give you more info. :)

I look forward to hearing all about your adventures!! :)

We bought the Passporter for the Disney Cruise- it is a great book that gave us tons of information!

[lookingforward]

Oh AJ is going to LOVE the disney cruise! You all will. Atlantis has an amazing aquarium that feels like an underwater grotto/cave area. It was so cool. I do think there is a pirate party now on board with fireworks. It is a nighttime event if I recall so plan ahead and make sure your kids are well rested.

The kids lab has some great activites, too. The nightly shows are well worth going, too. You will be so pleased with the cruise! :thumbsup2

[camarks1234]

ok, where do I find a passporter? Are they online somewhere? I've never heard of that. I'm so clueless! :) I like being a veteran at things not a newbie! :)

[lookingforward]

www.passporter.com

It is a great resource!

[teresajoy]

Wow, you've all been through so much this year. I'm so glad you are getting your wish trip! :hug:

[maroo]

Great Pre-trippie...AJ is so cute!! :) Very handsome!

I am so excited about your trip. I have not been able to "follow" a Disney Cruise yet...so it will be so cool to watch you guys experience it! :)

I am so proud that you guys are getting a WISH! It definitely sounds like you guys deserve it.

And, I am so sorry that you were not right there when all of this started. What a very, very long day you must have had in those airports...awful. And I am really sorry about that!

I am glad AJ seems to be doing well. I know you guys will enjoy your trip!!!!

I am subscribing to your report, too! So I will get updates!! :) :thumbsup2

[camarks1234]

www.passporter.com

It is a great resource!

THANKS!


And, I am so sorry that you were not right there when all of this started. What a very, very long day you must have had in those airports...awful. And I am really sorry about that!


Yeah, it was literally a parents worst nightmare. The longest day of my life and when they took him in for the surgery we were getting on the plane and he had a 50/50 chance. I have never been that devastated in my life.

But....God works in mysterious ways. The boys were staying at my parents who live 10 min. from the hospital. We otoh, live in the country and it would've taken us 30 min at least to get him to the hospital if we'd been at home. They said he probably wouldn't have made it.

So....I believe there is a big plan out there, so much bigger than me and I try not to second guess the Boss. :)

Thanks for all the tips, we are very excited!

[iu97alum]

www.passporter.com

It is a great resource! I love my passporter!!!! :thumbsup2

[iu97alum]

ok, where do I find a passporter? Are they online somewhere? I've never heard of that. I'm so clueless! :) I like being a veteran at things not a newbie! :)

Ok, here are is my 2 cents
Go to passporter.com, sign up for their newsletter. Then at the bottom of their newsletter is a code (a % off). use that code and go order the cruise passporter. I have the deluxe version but that's because we went to WDW last january and figured we'd be going again, so I bought the deluex and took out the WdW stuff (stored) and put in the cruise refill. :)

[oklamomof4boys]

THANKS!



Yeah, it was literally a parents worst nightmare. The longest day of my life and when they took him in for the surgery we were getting on the plane and he had a 50/50 chance. I have never been that devastated in my life.

But....God works in mysterious ways. The boys were staying at my parents who live 10 min. from the hospital. We otoh, live in the country and it would've taken us 30 min at least to get him to the hospital if we'd been at home. They said he probably wouldn't have made it.

So....I believe there is a big plan out there, so much bigger than me and I try not to second guess the Boss. :)

Thanks for all the tips, we are very excited!


That is beautifully said. You all have been through so much- it will be a well deserved break. I am glad somebody told you about the passporter site. I couldn't remember where I got mine!

Carol

[tinytreasures]

Can't wait to hear about your trip
glad you are almost done with Chemo

[mom2lilnick]

Just stumbled on your PTR, AJ is such a wonderful, strong young man! Hugs and I can't wait to hear more.

[camarks1234]

thanks so much for the passporter advice. I ordered that and signed up for those forums as well. I don't know when I'm going to find the time to read everything but I'll try.

[jessica52877]

I am enjoying getting to meet you and your family! Just wish it was for different reasons, but AJ sounds like a wonderful child.

What a nightmare/blessing of day that must have been when you were in Vegas! Makes me second guess the thought of ever going on vacation without Dallas.

[camarks1234]

Just a little update. I did order the passporter and can't wait till it gets here!!!

I also found out we have a deluxe oceanview room. That sounds really nice!!! We can't wait!!!! Yippee!

[iu97alum]

Just a little update. I did order the passporter and can't wait till it gets here!!!

I also found out we have a deluxe oceanview room. That sounds really nice!!! We can't wait!!!! Yippee!
Mine was here in no time! Did they give you the quick download? :)
What room are you in? Did they tell you? You can check out the reviews (if there are any) on wdwinfo site room reports (http://www.wdwinfo.com/wdwinfo/cruise-new/roomlist.cfm)

Yea!!

[maroo]

I just love this story...

Free bump on this Pre-trip report!! :) wanted to make sure all of you guys saw it! :)

[camarks1234]

Working on our last treatments this week!!! Yahoo! He is going through his last in-patient treatment right now, and next Tues. will be the last out-patient. (hopefully).

We are in room 2008, and I looked online for a review on it, but there wasn't one. No news is good news, right? I was kind of disappointed it wasn't a room with a balcony, but maybe we can upgrade on our dime once we check in. I was reading in the passporter that is a possibility. I should probably research about it more. Anyway, we are totally happy with anything really, and hopefully won't spend much time in the room at all.

[iu97alum]

Working on our last treatments this week!!! Yahoo! He is going through his last in-patient treatment right now, and next Tues. will be the last out-patient. (hopefully).
:cool1: :cool1: YEA!!



We are in room 2008, and I looked online for a review on it, but there wasn't one. No news is good news, right? I was kind of disappointed it wasn't a room with a balcony, but maybe we can upgrade on our dime once we check in. I was reading in the passporter that is a possibility. I should probably research about it more. Anyway, we are totally happy with anything really, and hopefully won't spend much time in the room at all. Don't feel bad, we thought the same thing! What cat is it? Do you have a porthole? Congrats on getting your room though! Doesn't it feel more real now???

[camarks1234]

Just finished our last treatment this week!!! WOOT!!!!

http://www.mcgreevymarksphoto.com/images/blog/LastChemo/lastchemo_0008.jpg

No, that's not coffee, just hot choc. he is a hot choc afficionado! :)

I really need to get in gear with planning as far as suitcases and stuff go. yikes!! I'm not a good packer. Any advice on packing is appreciated! :)

Yes, it looks like we have a porthole so that will be awesome! More later!

[iu97alum]

Just finished our last treatment this week!!! WOOT!!!!

http://www.facebook.com/photo.php?pid=1737121&id=510634111&ref=mf

No, that's not coffee, just hot choc. he is a hot choc afficionado! :)

I really need to get in gear with planning as far as suitcases and stuff go. yikes!! I'm not a good packer. Any advice on packing is appreciated! :)

Yes, it looks like we have a porthole so that will be awesome! More later!Parrrrrrrrrttttyyyyyyyyy!!!party: Isn't that wonderful???? :) :) :) Funny, I started taking Emy to a therapist and it's our "treat" to get hot chocolate on those days. :) Too FUNNY!!!!

Packing, um, don't ask me. I'm an OVERpacker. :) But, I'd probably bring two large suitcases for our family, plus carryons. The kids have their own backpacks for the plane (leapsters, paper, crayons, etc) and I carry the snacks and DH carries the cameras. I'm still debating what "purse" to take for excursions. I think my overland Donner is going to win out:goodvibes

You know you can also send a package to the ship ahead of time, just as long as it doesn't have food in it I believe. :)

[oklamomof4boys]

Yea! I'm sure that is such a great feeling!

As far as packing-I'm not sure how much you have read over at the Disney Cruise area. We went on a 4 night cruise about 18 months ago. This is my biggest advice-try to pack light. For dinner, bring a couple of pairs of pants ( or skirts if you prefer- I brought capris) and then rotate shirts. You can store your empty suitcases under your bed ( you might have to lift the frame up a bit to slide them under)-this frees up a ton of room. The best time to swim is when you first board-depending on when you board. We got on around noon, grabbed a bite to eat from the buffet then the kids put on their swimsuits and swam in empty pools. If you want to do this, make sure you carry on your swimsuits with you-you won't get your suitcases until about 3:00pm. The pools are small and after my boys had done the Mickey slide a couple of times, they were done with them- but the hottubs might be fun- Nathan can't do them, so we skipped them.

You are going to have such a wonderful time!

[maroo]

Just finished our last treatment this week!!! WOOT!!!!

http://www.mcgreevymarksphoto.com/images/blog/LastChemo/lastchemo_0008.jpg

No, that's not coffee, just hot choc. he is a hot choc afficionado! :)

I really need to get in gear with planning as far as suitcases and stuff go. yikes!! I'm not a good packer. Any advice on packing is appreciated! :)

Yes, it looks like we have a porthole so that will be awesome! More later!

Woo Hoo!!!! :banana: :banana: :banana:

Congrats, AJ!!!!! That is fabulous!

I LOVE, LOVE hot chocolate. Especially white hot chocolate. Yum Yum. In fact...in honor of your celebration...I will have one just for you! :)

Packing...just make sure you pack and extra duffle or something...cause you will probably come home with more than you take. And that stuff expands! :)

[jessica52877]

Hope you all are okay as I see it has been a while since you posted! Is everyone excited for the cruise?

[momtoBrandon&Jacob]

I just came across your TR and wanted to say God Bless to you and your beautiful family. :grouphug:

[camarks1234]

thx everyone. I will update this soooon! It has been an insane month. We were at the hospital all week this week and internet access was intermitent.

I do have awesome news though!

We think we have NED for AJ!!!!!! :cheer2: pixiedust:

(No Evidence of Disease)

He has a spot of radiation necrosis on his brain still so there is a blip. Hopefully it won't cause any serious issues and the radiologist still hasn't seen the spinal scans, but our oncologist said everything looked good ott.

Praise the Lord!

We got pixie dust yesterday and I will update with pictures soon!!!

THANK YOU, THANK YOU, THANK YOU!!! It brought smiles to their faces after this long week.

[maroo]

WOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

NED!


Congrats!!!


:cheer2: :cheer2: :cheer2:

:beach: This is you guys, soon!! :)

Woo Hoo!!!!!

[iu97alum]

Woo hoo!!! Fabulous news for sure!! These are the best 3 letters ever!!!

[camarks1234]

MAW gave AJ a Bon Voyage party at Culvers last Saturday. Here are a few pics

http://www.mcgreevymarksphoto.com/images/blog/aj/maw/maw__0034.jpg

http://www.mcgreevymarksphoto.com/images/blog/aj/maw/maw__0005.jpg

as you can see in his face, he has the button, he's going to use it! :) LOL

http://www.mcgreevymarksphoto.com/images/blog/aj/maw/maw__0008.jpg

our wish coordinators
http://www.mcgreevymarksphoto.com/images/blog/aj/maw/maw__0028.jpg

[llurgy]

thx everyone. I will update this soooon! It has been an insane month. We were at the hospital all week this week and internet access was intermitent.

I do have awesome news though!

We think we have NED for AJ!!!!!! :cheer2: pixiedust:

(No Evidence of Disease)

He has a spot of radiation necrosis on his brain still so there is a blip. Hopefully it won't cause any serious issues and the radiologist still hasn't seen the spinal scans, but our oncologist said everything looked good ott.

Praise the Lord!

We got pixie dust yesterday and I will update with pictures soon!!!

THANK YOU, THANK YOU, THANK YOU!!! It brought smiles to their faces after this long week.

Fantastic news on the NED!!!

[llurgy]

MAW gave AJ a Bon Voyage party at Culvers last Saturday. Here are a few pics

http://www.mcgreevymarksphoto.com/images/blog/aj/maw/maw__0034.jpg

http://www.mcgreevymarksphoto.com/images/blog/aj/maw/maw__0005.jpg

as you can see in his face, he has the button, he's going to use it! :) LOL

http://www.mcgreevymarksphoto.com/images/blog/aj/maw/maw__0008.jpg

our wish coordinators
http://www.mcgreevymarksphoto.com/images/blog/aj/maw/maw__0028.jpg

You can see the determination in his face as far as that button is concerned :rotfl2:

Sweet that Culvers had his name up in the ticker lights outside, that must have felt awesome seeing that as you parked up!!

[LuvGoing2Disney7]

:cool1: NED :cool1:

:cheer2: :cheer2: :cheer2:



Love his name on the sign. You can see in his face how excited he is. I can't wait to read about all the F.U.N. you all are going to have

[kimmylaj]

just found your report and your children are beautiful. so wonderful for you to hear NED . that is great. have a wonderful trip

[ndloewen]

Just found this thread. Only a few more days for you now!! Can't wait to hear all about it!!

[mom2lilnick]

AWESOME! You guys are so close!

[camarks1234]

Well, we've been back a couple weeks now and I apologize for not undating right away. I have posted the start of a trip report here (http://www.disboards.com/showthread.php?p=30433704#post30433704)

I just want to thank everyone here for all the advice, stories and sharing of experiences that helped make it such a wonderful trip. Thank you for all of the pixie dust, and just everything.

PS: We loved it SO much we booked a (is it called a bounceback?) $99 cruise for Sept and are taking my parents to experience the magic! Woohoo! We are officially DCL addicts!!!!!

[jessica52877]

Going to read the TR now! I am glad you seemed to enjoy it! AJ deserved some fun family time!