extra special trip

[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.

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]

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!
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!!

 

[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