Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[maroo]

Mya had her clinic visit today for what was only suppossed to be a quick lab check. It wound up being a two hour stay. I found out that her AFP is at 22. I was happy at first because it was lower then last time but then Mya's onco explained they had last checked it 6 weeks ago which meant her tumor had stopped growing but started growing again while we were waiting for her counts to come up. So Mya is still in active relapse and we will have to switch her chemo protocol. Her onco wants to switch her to a protocol that they typically use for brain tumor patients. I honestly don't know what will happen next. I am trying to continue to be strong but it is getting harder.

Gosh...I am so sorry. And nothing I say seems right.

But I am praying for you guys. Every day.

Stay strong. Even though we have never met you, we are all rooting for you guys!

Hang in there.

 

[maroo]

Thank you, we need all the prayers we can get. I am just devestated right now. It never gets easier to find ourselves at square one even though its happened several times. If anything it gets harder. No matter what happens, we are going to enjoy ourselves on our Wish trip and I refuse to let even the thought of Cancer cloud my thoughts. Again please pray that I keep up my faith as I really am struggling with this right now.

Praying for you right now.

and

 

[Eeyores Butterfly]

I am so sorry to hear about Mya. I will definitely keep your family in my prayers. Hopefully your Wish Trip will be a bright spot during this stressful time.

 

[Matt1026]

Mya had her clinic visit today for what was only suppossed to be a quick lab check. It wound up being a two hour stay. I found out that her AFP is at 22. I was happy at first because it was lower then last time but then Mya's onco explained they had last checked it 6 weeks ago which meant her tumor had stopped growing but started growing again while we were waiting for her counts to come up. So Mya is still in active relapse and we will have to switch her chemo protocol. Her onco wants to switch her to a protocol that they typically use for brain tumor patients. I honestly don't know what will happen next. I am trying to continue to be strong but it is getting harder.

Please know that we are praying you and your daughter. We pray that you will have the best week ever!!!! Just to laugh and have a wonderful magical time.

 

[myasma]

Does anyone know if I can carry Mya's stroller on the plane or do I have to check it. Is it okay to carry on Mya's prescription Benydryl even though it is not in a 3 oz bottle? Also does GKTW provide washclothes and towels or do I bring them? Its the day before we go and I am doing so much last minute stuff!!

 

[maroo]

Does anyone know if I can carry Mya's stroller on the plane or do I have to check it. Is it okay to carry on Mya's prescription Benydryl even though it is not in a 3 oz bottle? Also does GKTW provide washclothes and towels or do I bring them? Its the day before we go and I am doing so much last minute stuff!!

You can take her stroller all the way to the gate and just "gate check" it...you can give it to the lady right there at the gate and they will have it for you when you get off the plane. That way you can use it in the airport.

** Make sure you get a "Use the Stroller as a Wheelchair" sticker from Guest Relations when you get to Disney so that you can use the stroller the whole time at Disney and not ever have to park it. So she doesn't have to walk if she does not want to. **

Not sure on the Benadryl...since it is over the counter. ?? Anyone else know this? I would put it in your checked bag, if she won't need it on the plane. Or even pour a little out for her next dose and pack the rest?

And they do have washcloths and towels and you can call if you need some more. But you do have to wash your own...they don't really have housekeeping. It is like being at home.

Enjoy your trip!!!!!!!!

 

[myasma]

You can take her stroller all the way to the gate and just "gate check" it...you can give it to the lady right there at the gate and they will have it for you when you get off the plane. That way you can use it in the airport.

** Make sure you get a "Use the Stroller as a Wheelchair" sticker from Guest Relations when you get to Disney so that you can use the stroller the whole time at Disney and not ever have to park it. So she doesn't have to walk if she does not want to. **

Not sure on the Benadryl...since it is over the counter. ?? Anyone else know this? I would put it in your checked bag, if she won't need it on the plane. Or even pour a little out for her next dose and pack the rest?

And they do have washcloths and towels and you can call if you need some more. But you do have to wash your own...they don't really have housekeeping. It is like being at home.

Enjoy your trip!!!!!!!!

Thank for answering my questions Maroo. Her Benydryl is actually prescribed by her doctor and has the RX seal on it. Will that help me being able to take it on? Maybe I will just give her a dose before we leave and put it in our checked baggage.

 

[maroo]

Thank for answering my questions Maroo. Her Benydryl is actually prescribed by her doctor and has the RX seal on it. Will that help me being able to take it on? Maybe I will just give her a dose before we leave and put it in our checked baggage.

If it has the Rx seal, then you are totally good! You can carry it with you and keep it with you.

 

[Eeyores Butterfly]

Looks like Maroo has given you all of the answers for the plane. Have fund on your trip! I can't wait to read your Trip Report!

 

[StefaniLyn]

Mya had her clinic visit today for what was only suppossed to be a quick lab check. It wound up being a two hour stay. I found out that her AFP is at 22. I was happy at first because it was lower then last time but then Mya's onco explained they had last checked it 6 weeks ago which meant her tumor had stopped growing but started growing again while we were waiting for her counts to come up. So Mya is still in active relapse and we will have to switch her chemo protocol. Her onco wants to switch her to a protocol that they typically use for brain tumor patients. I honestly don't know what will happen next. I am trying to continue to be strong but it is getting harder.

I'm sorry to hear about Mya's latest appointment. I understand how difficult it can be when you anticipate a quick check up and the docs steamroll you with a 2 hour gee-is-there-anything-else-you-can-tell-me-to-further-ruin-my-day? appointment. I hope the docs are able to find a protocol that will kick the crap out of Mya's cancer. You are already a very strong woman to have gone through what you have already been through. You will find the strength to get through this too. A very wise man once told me - "You are Braver than you Believe, Stronger than you Seem, and Smarter than you Think." Oh wait, that was Winnie-the-Pooh. I always get my best advice from him. We will keep you and Mya in our prayers.

 

[Corrine 1973]

Anyone who had read my PTR you know that I am doing a DMFN every tueday night until our Wish trip. This week we are watching The Incredible's and I am still trying to think of some ideas for food.

I know there is a thread and often look here for ideas, but I am trying to be original and do my own thing. But if any one has any good ideas feel free to pop in on my PTR and let me hear them. Just think of me as the ginny pig, you can see what it will look at before you attempt it on your own.

Looking forward to hearing from you all.

 

[tastycollector]

Home from DisneyLand! Will start Dev's TR soon!

 

[MomTo4+more]

An hour or so ago I posted my emotional, frustrated response to a conversation with the guy on the resevrations line at DW. I won't recap my entire rant here. I have calmed down some. Suffice it to say, it looks like Deyki's peanut allergy will limit him from some of what he really hoped to do on his trip.

He wants to be a pirate. Does anyone have a good alternative to the Pirates and Pals Fireworks Cruise? Any ideas?

 

[maroo]

An hour or so ago I posted my emotional, frustrated response to a conversation with the guy on the resevrations line at DW. I won't recap my entire rant here. I have calmed down some. Suffice it to say, it looks like Deyki's peanut allergy will limit him from some of what he really hoped to do on his trip.

He wants to be a pirate. Does anyone have a good alternative to the Pirates and Pals Fireworks Cruise? Any ideas?

Let me look into this...if you don't mind?? I may ask around on the DISabilities to see if anyone has any good ideas on this.

 

[MomTo4+more]

Let me look into this...if you don't mind?? I may ask around on the DISabilities to see if anyone has any good ideas on this.

I don't mind at all. I would appreciate it! thanks for being willing to try to help.

 

[Eeyores Butterfly]

I posted on her other thread, but I think I may have found a solution. I talked to a GR manager and he gave me a number to call tomorrow. So please keep your fingers crossed!

We had our Ride for Wishes Saturday. Talk about a letdown. We had a grand total of 21 bikers. The staging place apparently does a lot of these charity rides. There was another charity ride the same day and they did not tell us. They put that ride on their website but not ours, so that ride had several hundred riders and we had 21. Oh well, live and learn. Hopefully our walk will go better! I have lined up some people from the KC Renaissance Festival to do costumed characters and Worlds of Fun is working on the possibility of Snoopy Characters. I hope it works out.

 

[MomTo4+more]

I thought it would be fun if we shared creative ideas for making the waiting to leave time pass faster. I know different ideas have been mentioned on the PTR's, but I thought it would be fun to gather them here.

Here are some of our ideas -

Disney Dollar Days - We are having one of these days today! I have lots of lesson planning to do for the upcoming school year. (Probably should get off these boards and get to work!) I need my children to be cooperative and somewhat independent today, so I am giving them an opportunity to earn Disney Dollars. If they do what is expected of them, they can each earn 5 Disney Dollars. It's motivating, and I know they won't spend it all on Rolos and gum!

Notecards for autographs - Make a notecard for each character whose autograph you hope to get. If you make one each day, it gives you something to look forward to and is easy to keep up with. I found an expandable index card file at KMart. It has 13 sections, so I can organize the cards alphabetically. There is a bigger front section to put completed cards into. We don't always do one a day, so we do a few on our Disney Family Fun nights to fit with the movie we watch.

Disney Family Fun Nights - I was inspired by Corrines PTR and stole her idea of a movie themed dinner once a week. It's been a hit! My kids take turns helping me prepare the meal.

Family Trip Journal - I am just starting our family journal. The idea is to have one place where I gather the thoughts, ideas, and feelings of each family member as we plan and enjoy our trip. They can write or draw in it. We will add photos and planning details. Each entry is dated, so we can look back and remember this once in a lifetime wish trip.

Special Treats - As we get closer to leaving, I want to use the Disney candy wrappers I found on the Creative section of this forum to leave bedtime "kisses" and morning treats for the kids. I think we will start that a week to ten days before we leave.


On another note, Michael's in my area has a great clearance sale going on lots of Disney things. I got playing cards, lanyards, bouncy calls, crayons, markers, diaries, and more all for a dollar each! I am going to put them in the children's carry-ons to use on the plane.


Can't wait to hear more of your creative ideas!

 

[tastycollector]

Photopass CD's can NOT be pre-ordered for DisneyLAND! However, they are only $59.95.

 

[Matt1026]

I thought it would be fun if we shared creative ideas for making the waiting to leave time pass faster. I know different ideas have been mentioned on the PTR's, but I thought it would be fun to gather them here.

Here are some of our ideas -

Disney Dollar Days - We are having one of these days today! I have lots of lesson planning to do for the upcoming school year. (Probably should get off these boards and get to work!) I need my children to be cooperative and somewhat independent today, so I am giving them an opportunity to earn Disney Dollars. If they do what is expected of them, they can each earn 5 Disney Dollars. It's motivating, and I know they won't spend it all on Rolos and gum!

Notecards for autographs - Make a notecard for each character whose autograph you hope to get. If you make one each day, it gives you something to look forward to and is easy to keep up with. I found an expandable index card file at KMart. It has 13 sections, so I can organize the cards alphabetically. There is a bigger front section to put completed cards into. We don't always do one a day, so we do a few on our Disney Family Fun nights to fit with the movie we watch.

Disney Family Fun Nights - I was inspired by Corrines PTR and stole her idea of a movie themed dinner once a week. It's been a hit! My kids take turns helping me prepare the meal.

Family Trip Journal - I am just starting our family journal. The idea is to have one place where I gather the thoughts, ideas, and feelings of each family member as we plan and enjoy our trip. They can write or draw in it. We will add photos and planning details. Each entry is dated, so we can look back and remember this once in a lifetime wish trip.

Special Treats - As we get closer to leaving, I want to use the Disney candy wrappers I found on the Creative section of this forum to leave bedtime "kisses" and morning treats for the kids. I think we will start that a week to ten days before we leave.


On another note, Michael's in my area has a great clearance sale going on lots of Disney things. I got playing cards, lanyards, bouncy calls, crayons, markers, diaries, and more all for a dollar each! I am going to put them in the children's carry-ons to use on the plane.


Can't wait to hear more of your creative ideas!

Oh I just love your ideals That will add so much fun and excitement before we leave.

 

[jenb1023]

I thought it would be fun if we shared creative ideas for making the waiting to leave time pass faster. I know different ideas have been mentioned on the PTR's, but I thought it would be fun to gather them here.

Here are some of our ideas -

Notecards for autographs - Make a notecard for each character whose autograph you hope to get. If you make one each day, it gives you something to look forward to and is easy to keep up with. I found an expandable index card file at KMart. It has 13 sections, so I can organize the cards alphabetically. There is a bigger front section to put completed cards into. We don't always do one a day, so we do a few on our Disney Family Fun nights to fit with the movie we watch.

Oh I just love your ideals That will add so much fun and excitement before we leave.

Any of you that become recipients of the Big Give might want to hold off on autograph cards/books for the time being. Don't want to say too much.