extra special trip

[tinkerbellxxx]

my daughter finishes treatment for leukemia in may . we go to wdw in nov any tips for making it extra special? she is eight and has never been before.
she is so excited.

[Disbug]

How wonderful for her (and you)! Congratulations and best wishes for her continued health..

Are you staying onsite? If so, I would call and make sure the resort knows of your special intentions. If she is up to it, how about a special "Scavenger Hunt" with Peter Pan, Wendy, Captain Hook and Smee? This is a tour of the Magic Kingdom that can be booked in advance for your family.

Another lovely thing, is a Mother/Daughter tea at the Grand Floridian's Grandview lounge. It is held every afternoon starting at 2 PM.

The GF spa also has mini beauty packages for a manicure/facial etc... for mothers/daughters.

At DTD there is a new beauty parlor JUST for little girls. They can get their hair, makeup, manicure done. This is fairly new.

If she is outdoor oriented, how about a ride in the water mice (little mini power boats) around the Seven Seas Lagoon? They fit two people nicely and are fun to ride around in on a sunny afternoon.

Hope this helps you with some ideas....

[tinkerbellxxx]

thanks for that disbug! we are staying in a villa in kissimee but for 3 weeks nov-dec. do we avoid parks on thanksgiving if so which ones? getting really excited now and its ages away!!

[michelle9343]

I think the Bibbity Bobbity Boutique at the World of Disney would be a wonderful thing to do. It offically opens on 4/5/06 and will be a salon run by Fairy Godmothers in training. Little princesses can come to have the hair done (like and up do) nails and make-up . You can also go for the full package and have all three things done plus a princess costume and a photo done. I have seen the new salon and it is beautiful. I princess meal would be a wonderful thing.
Most of all have a wonderful celebration.

[spotdog]

The Bibbity Bobbity Boutique sounds wonderful for an 8 year old. If the cost is too much, just a princess dress and character meal (some kids like breakfast better than dinner) may be a special treat. Let her be the princess. :wizard:

[tinkerbellxxx]

thanks everyone!!
we are staying in a villa not on site but this boutique sounds good do we need to book?
love tink

[madonna31]

She's never been before? How very exciting!

I would recommend a meal with the Princesses!! :thumbsup2

[roseprincess]

my daughter finishes treatment for leukemia in may . we go to wdw in nov any tips for making it extra special? she is eight and has never been before.
she is so excited.

Is your daughter getting a wish granted from Make-A-Wish foundation? If she is, they would make her trip very special for her at Give Kids the World resort, which is also in Kissimee.

Congratulations for your dd almost done with her treatments!


Rosemarie

[tinkerbellxxx]

unfortunatly make a wish dont do acute lymphoblastic leukemia they say its not life threatening. we are currently looking at other options but whatever happens i cant wait to see the smile on her face when she meets the characters. it will be worth everypenny.she has been so brave.

[stanncie]

Are you sure about this?? I am a pediatric PT who has seen many kids get their make a wish.
Not long ago one of my patients who also has ALL got their disney trip from make a wish.

She also has down syndrome but the mother told me that she only qualified thru the ALL diagnoses and not the Down's one.

I have also seen kids with CP get their wishes. Now CP per se is not life threatening although it reduces your life span.
I'm very confused abou this now.
I would double and triple check if I were you , i'm sure your daughter and family deserve this after battling cancer. good luck!!!

[tinkerbellxxx]

she was referred to `make a wish ' through our clic nurse but was refused any wish on those grounds. they have only just changed it and have informed clic and the chics charity that unless an ALL patient relapses they no longer do it. we are currently organizing our holiday through christian lewis and we still may have a chance of staying in gktw for the first week. fingers crossed.

[stanncie]

oh , i see, what bad luck!!! well i wish you all the best regardless. Have a great trip!!! :)

[JenJen]

she was referred to `make a wish ' through our clic nurse but was refused any wish on those grounds. they have only just changed it and have informed clic and the chics charity that unless an ALL patient relapses they no longer do it. we are currently organizing our holiday through christian lewis and we still may have a chance of staying in gktw for the first week. fingers crossed.
I can't believe this! Gezzz your child has Cancer I thought that was what make a wish was about! I am in shock right now! There are other foundations if Christain lewis does not work out. Click on the links below!
The Kids wish Network (http://www.kidswishnetwork.org)

Children's Wish Foundation International (http://www.childrenswish.org)

Give Kids The World (http://www.gktw.org)

[Linda Bell]

I have a severely handicapped daughter so your YMMV but things that were a hit in previous trips....
Gift basket to the room, vinyl Disney decals for the windows and mirrors, personalized T shirts, a small tree with lights, Disney dollars, new mouse clothes she didn't know about in the suitcase, her own camera, princess: a collection of things (one year it was tiny ceramic characters, another all the postcards), a glue stick and scrap book and a hunt for things to find for it, and letting her plan the trip using the WDW planning books.
#1 was lunch at the castle where I told the lady she loved Cinderella when we made our resevations on site. Cinderella spent a good 10-15 minutes with us. Very cool.

Linda Bell

[SueM in MN]

I can't believe this! Gezzz your child has Cancer I thought that was what make a wish was about! I am in shock right now! There are other foundations if Christain lewis does not work out. Click on the links below!
The Kids wish Network (http://www.kidswishnetwork.org)

Children's Wish Foundation International (http://www.childrenswish.org)

Give Kids The World (http://www.gktw.org)
I can maybe help clarify from things I have read/heard over the years about Make A Wish. There are people who probably know more and can explain better than I can, but I'll give it a try.

Make a Wish (MAW) is a national organization, but they are not the actual organization that fulfills the wishes for children under the age of 18 with life-threatening conditions.
Local/State/(National in some other countries) Affiliates or Chapters of the national organization are the actual wish fulfillers.
They each have their own budgets. Some have bigger or smaller budgets than others. Some may have more wishes to fill than others. Some may have ways that their budget can stretch farther - for example, more volunteers doing things that some other chapters might have to pay someone to do; or more items donated, or wishes that cost less to fulfill - for example a wish for a child in Minneapolis to attend a Twins game and meet some players might cost nothing, but if that same child was from Duluth (3 hours away), the wish would also include transportation, food, lodging.

Also, timing can make a difference. If they have spent more than half their money before the budget year is more than half over, they may be more strict on just what is considered a life-threatening condition, since they don't know how many wishes they might have to still fulfill that year. They don't want to have spent all their budget and have to turn down last wishes for children.
So, it is possible that one chapter might consider a particular illness life-threatening when another doesn't, or the same chapter/affiliate may grant wishes earlier in the year for some conditions that they don't consider life-threatening later in the year when their budget is stretched thin. Each affiliate/chapter makes decisions based on their own budget and capabilities.
I'm sorry to hear that your MAW chapter is not able to grant wishes to kids with ALL (and I hope your DD stays in remission and doesn't fall into the relapsing group that they can grant wishes to).

Give Kids the World has a list on their site (or can refer you to) one of the other wish granting organizations they work with if MAW can't help you. I think Give Kids the World works with something over 200 other wish granting organizations besides MAW.

[SueM in MN]

I think the Bibbity Bobbity Boutique at the World of Disney would be a wonderful thing to do. It offically opens on 4/5/06 and will be a salon run by Fairy Godmothers in training. Little princesses can come to have the hair done (like and up do) nails and make-up . You can also go for the full package and have all three things done plus a princess costume and a photo done. I have seen the new salon and it is beautiful. I princess meal would be a wonderful thing.
Most of all have a wonderful celebration.
it wasn't officially open yet when we were there, but they were doing some make-overs (sort of like pre-opening practice runs). It looked very cute and the girls in there looked very special. If she is a "girly" girl, it would be lots of fun.
We went to the Princess meal (supper) in Norway in WS. That was fun (although, I would suggest lunch since I think it's less expensive) and some of the little girls were just in awe of the princesses.

With an 8 year old, I would get one of the children's guides to WDW and have her help you plan.

I have never been to WDW over Thanksgiving time, but the park I would avoid for that day (or any holiday) would be MK. Since you are staying in a villa in Kissimmee, you could plan to have an actual Thanksgiving dinner. To avoid cooking, you could order a meal premade from a local SuperTarget store (http://www.target.com). There are some nice Targets in the Kissimmee area and I know Targets here in Minnesota does Thanksgiving meals. You have to order it a week or so before and pick it up the day before, then just re-heat it.

[kdtwiss]

another much less expensive option is to stop at the barbershop in MK - we did with our kiddos. My dd got her hair pulled back and sprinkled with all kinds of glitter and Mickey tyoe confetti. They even painted on a blue cinderella headband with hair paint - it was awesome - $5! She was getting compliments ALL day!
The dinner at 1900 Park Faire was amazing, as was the Princess Storybook Dinner in Epcot (food was gross tho) if your dd is into princesses. If you think she woul enjo an outing w/o you, there is the pirate cruise - which my kids had a blast on! Just ask if you have any ??

[stanncie]

Thanks for the info SueM :)
I'm very interested in this topic since I often get asked questions about make a wish in my practice. Like I stated before i've seen many kids get their wish with conditions that are not life threatening per se. These kids have great disabilities though. I've often observed as well that parents that are very proactive and in a more crude term 'pests' get a lot of stuff done and taken care of for their children. There are so many organizations out there that provide help and it is unfortunate that a lot of parents are not aware of all of the resources that exist.
I often encourage parents to literally become 'pests' because unfortunately this is the often the only way that they get resources and the help they need.

[tinkerbellxxx]

thanks everyone!!
i like the sound of the boutiques and barbershop they sound great !!
is thanksgiving busy around the actual day as well ?
as for make a wish i feel no menace towards them ,i have seen far worse children than my daughter and i am just glad she is doing well. :cheer2:
we will have a great time. :banana:

anyone looking for other charities could try
dreams come true or christian lewis.
christian lewis have there own villa which they let you use and dreams come true do a nov group trip.

[wiebke]

Dear TinkerbellXXX,
I currently work for Make-A-Wish (have for 5 years) and I can tell you that I have never seen a child turned down that has ALL. I currently have over 10 ALLs, CMLs, etc. on my list. The only reason I can see a child being ineligible for a wish is if the child has been in remission for over 5 years. Make-A-Wish does have a National office but there are over 77 chapter worldwide. I have never heard of any chapter turning down a child due to funding. However, the child's doctor is the one who determines whether or not the child meets the MAW criteria. The doctor MUST make that determination before MAW can proceed. I would seriously ask your social worker about being re-referred to MAW. I really think there has to be a misunderstanding. If you write back and let me know what city and state you live in, I can give you the direct number that covers your territory.

Also, all Make-A-Wish chapters have the SAME criteria that is set forth by the National office. (In other words, one chapter cannot decide that they won't grant wishes to children with a particular illness like SueM in MN implied.)

[SueM in MN]

Also, all Make-A-Wish chapters have the SAME criteria that is set forth by the National office. (In other words, one chapter cannot decide that they won't grant wishes to children with a particular illness like SueM in MN implied.)
The information I got (which I admit may not be entirely correct or correct in all areas) was from news media reports and talk radio appearances by former board members when the entire board of the Minnesota MAW organization resigned over some disagreements with National MAW. That occured in Oct of 2004, and I was not able to find any articles to link to that mentioned the things I posted - here is a link to an article about the new organization begun by the 23 board members who left. (http://www.wishesnmore.org/news/2004.10.20%20STRIB%20-%20First%20Article.htm)

If it's not true, I'm sorry, but that was one of the things some board members did say (and, thinking about it, since they were all resigning, they might have more critical) and it sounds logical, so I would not have reason to doubt it (especially as the OP says her local MAW had informed clinics they had just stopped).

It sounds like there is more to know.

[tinkerbellxxx]

my daughter was diagonosed feb 2004 with ALL and although we live in north wales she attends clinic in alderhey hospital liverpool. the first year we spent most of it in hospital but the second year she was back in school although we have had infections and spent time in hospital.
during these two years we have seen children with ALL being granted wishes from make a wish. our clic nurse (a bit like a macmillan nurse) refered us to make a wish. we then were told they had stopped fulfilling wishes for ALL patients as they no longer deemed it life threatening.
chics (a support group for children with cancer) also told us they had been told this.
she was referred after having her two lots of intensive chemo so maybe who knows they deem her out of the woods.
as i said before we expected nothing so we werent disappointed im just glad she is doing well at mo.
she has her final lumbar puncture on may 4 and a sample of bone marrow will be tested also so please wish us luck .
after this all being well she stops all chemo(really good but really scary for me)just monthly checks from then on .

[Linda Bell]

[QUOTE=wiebke]Dear TinkerbellXXX,
. However, the child's doctor is the one who determines whether or not the child meets the MAW criteria. The doctor MUST make that determination before MAW can proceed. I would seriously ask your social worker about being re-referred to MAW. I really think there has to be a misunderstanding. If you write back and let me know what city and state you live in, I can give you the direct number that covers your territory.

Go for it Tinkerbell! :thumbsup2
http://www.acor.org/ped-onc/cfissues/maw.html
Partial quote:
Who is eligible for a Wish?
Eligibility varies slightly from organization to organization, and each chapter of the larger organizations sets its own rules as to age, "seriousness of the disease", and what type of wishes will be granted. Commonly, children aged 3 through 18 are granted wishes.
The "seriousness of the disease" issue is not quite as clear. Most organizations and chapters of organizations require a doctor's statement that the disease is "life threatening". The doctor is the only person who can make this determination. Some organizations require a doctor's statement of "terminal" rather than just "life threatening", although this is the exception rather than the rule. If your local organization falls in this latter class, search around for another one.
Some parents of children with ALL (acute lymphoblastic leukemia) have been told by their local wish organization that their child will not be granted a wish because the disease is not "serious" enough. If this happens to your family, first find out whether the organization requires "life-threatening" or "terminal", then find out what the doctor wrote on the application. Then, follow through: your child deserves a Wish! end quote

Linda

[ENSOCK]

Good luck on her bone marrow proc. I will say an extra prayer for her and you. Have a blast in WDW!! :goodvibes :goodvibes

[dj2]

is thanksgiving busy around the actual day as well ?


check out this page for park crowd information

http://www.touringplans.com/BestDays.htm

i second the barbershop idea. also getting her involved in the planning. has she been watching their promo dvd? that's fun.

does she like collecting things? pressed pennies are fun to make and relatively inexpensive. there are lists on these boards of locations, or you can just keep your eyes out for them.

also, i suggest you might want to take a pictures outside and/or on each ride/attractin. 8YO is still kind of young, and years later she's likely to remember best whatever you have pictures of.

we're going to do the "photos in silly hats" thing on our next trip. rather than buying the hats, we'll take pictures in each gift shop trying on the hats. should make a great photo album, or maybe a collage.

didn't notice it, but how's her condition expected to be--is she up for the walking, or have you thought about a stroller for her? might be a good idea. can be overwhelming

-dj

[skoopman]

I second what several other people have said in that you should try MAW again. If her hemotologist doesn't consider her serious enough I would try her pediatrician. Your DD has been through an awful lot and she deserves something FUN and carefree, as does the rest of the family!

Good luck with her LP and BMB.

Suzanne