Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FOUR!

[kailatilear]

Did anyone ever hit a depression after your child's wish trip? I feel like I have been on such a high for so long, that now I am in a severe low. I keep looking at pictures and waiting for our cd from gktw (since I have misplaced the one they gave me) and they are mailing me a new one I am hoping that once I start my tr after I get all my cd's coming that that itself will help the low I am in.

 

[kellyw8863]

Did anyone ever hit a depression after your child's wish trip? I feel like I have been on such a high for so long, that now I am in a severe low. I keep looking at pictures and waiting for our cd from gktw (since I have misplaced the one they gave me) and they are mailing me a new one I am hoping that once I start my tr after I get all my cd's coming that that itself will help the low I am in.

Yes, and it was bad. Hence why I didn't finish my TR until just recently (we went in April). I just couldn't get over the feeling that that week was as good as it is going to get for us, especially since we were seeing a lot of disease progression. But, the feeling did go away and now I can look back on it differently.

to you. It will get better.

 

[LVMom23]

At our walk last Sat..I was talking with one of our wish granters and she told me that they are now over a year waiting list for Wishes.

Wow, that is unreal! I didn't realize that there could be waiting lists that long.

I'm so excited for all of you. I can't wait to see pictures!

 

[LVMom23]

He also said that rather than a Send Off Party, they prefer to do a Welcome Back type of party so they can hear lots of great stories and see pictures

I LOVE that idea. I don't know whether or not they do parties before or after here, but regardless, I LOVE the idea of having one when we come back so we can share pics and stories.

 

[LVMom23]

Did anyone ever hit a depression after your child's wish trip? I feel like I have been on such a high for so long, that now I am in a severe low.

I am so sorry you are feeling that way. I can only imagine it would be normal after living a "dream" for so long.

 

[Mom2Miracles]

syammt - I am so sorry for everything Madison is going through, you as well. I know from experience, how hard all of this is. You feel like with every step forward you take, there are many you take backwards. Its like you can never just get ahead. Try and stay strong (though I know it can be so hard), Madison is watching you for everything, you need to be strong for her.

I finally have a update.
Avy's trip was Approved today. Now we know we are really going to Disney world
I updated her thread.

YAAAY!!!

I just received a call from our one of our Wish Volunteers and he told me that our Travel Packet should be mailed out to us this week. He said it would contain all of our travel information and details. I am assuming that it will also contain an expense check, though he did not mention that... there is no way we'd be sent off without one, right? It was something I did not want to ask him because it felt rude but we really don't have the money to eat in the parks etc without one.

He also said that rather than a Send Off Party, they prefer to do a Welcome Back type of party so they can hear lots of great stories and see pictures. He told me to pick a fun place like Chuck E Cheese's and invite Elliot's grandparents, little buddies, etc to attend, but to keep it modest that sounds fun, and something to look forward to after the trip.

I would be nervous to ask too, though i'm surprised they haven't said anything. Our Wish granter asked us already what name was on our banking account, or which name we would prefer on the expense cheque. So at least we don't have to wonder about that. Do you have their e-mail address? Maybe that would make it easier to ask?

Thats pretty cool about the party. I can see the excitement of having one pre-trip, would definitely add to the build up of the trip. At the same time, having one after would be a great way to talk and share about the trip.

Hope Madison is feeling better! Quick question---does anyone know if they have irons and ironing boards at the villas at GKTW?

Thanks!

Good question, though I don't even use an iron. I just use a spray bottle and spray on the clothes and shake a few times. Works like a charm, and saves me the yucky task of ironing.

Did anyone ever hit a depression after your child's wish trip? I feel like I have been on such a high for so long, that now I am in a severe low. I keep looking at pictures and waiting for our cd from gktw (since I have misplaced the one they gave me) and they are mailing me a new one I am hoping that once I start my tr after I get all my cd's coming that that itself will help the low I am in.

I haven't been on our trip yet, so I can't comment from experience. I'm sorry things are so hard for you. I hope that looking back at all the pictures (and talking about all the great stuff you did and experienced) will bring back all the wonderful, happy memories.

 

[blessedmom4]

Hope Madison is feeling better! Quick question---does anyone know if they have irons and ironing boards at the villas at GKTW?

Thanks!

http://www.gktw.org/pre/village/here-on-property.asp?p=village

Amenities include Irons and Ironing Boards!

 

[blessedmom4]

Did anyone ever hit a depression after your child's wish trip? I feel like I have been on such a high for so long, that now I am in a severe low. I keep looking at pictures and waiting for our cd from gktw (since I have misplaced the one they gave me) and they are mailing me a new one I am hoping that once I start my tr after I get all my cd's coming that that itself will help the low I am in.

Yes, and it was bad. Hence why I didn't finish my TR until just recently (we went in April). I just couldn't get over the feeling that that week was as good as it is going to get for us, especially since we were seeing a lot of disease progression. But, the feeling did go away and now I can look back on it differently.

to you. It will get better.

I could see that being me, especially after waiting SO LONG to finally get there...There is a lifetime of this for us as well on several fronts, so I just hope to savor as much as possible and take heart that it DOES improve when the letdown begins. I was SO happy you finished Your TR Kelly, I loved your report and looking forward to your TR as well Deena.

 

[billwendy]

I was really bummed when we got home from my nephew's trip. Fortunately, I had had the priviledge of kind of planning it out for our family, discovering all the info, planning the matching outfits (thanks Big Give!) and stuff like that. When we got home I was just so bummed out that the wonderful time was over!!!!! So now I love to participate in Big Give's for other families!!! lol

Tammy- Im hoping my Madison is okay!!! She is such a trooper though and I cant even imagine how hard it is on you girls!!! Big HUGS!!!!!

 

[blessedmom4]

I just received a call from our one of our Wish Volunteers and he told me that our Travel Packet should be mailed out to us this week. He said it would contain all of our travel information and details. I am assuming that it will also contain an expense check, though he did not mention that... there is no way we'd be sent off without one, right? It was something I did not want to ask him because it felt rude but we really don't have the money to eat in the parks etc without one.

He also said that rather than a Send Off Party, they prefer to do a Welcome Back type of party so they can hear lots of great stories and see pictures. He told me to pick a fun place like Chuck E Cheese's and invite Elliot's grandparents, little buddies, etc to attend, but to keep it modest that sounds fun, and something to look forward to after the trip.

Okay, I have no qualms about asking for someone else...Would you like me to call them for you? Then you could call for me??? (I am only half joking).

I LOVE the idea of a welcome back party to help ease the sting of everything being finished! Maybe that is what we should start suggesting for post wish families to do, even if their MAW chapter doesn't do that? I would host my own...I love a good reason to party!!

 

[blessedmom4]

I was really bummed when we got home from my nephew's trip. Fortunately, I had had the priviledge of kind of planning it out for our family, discovering all the info, planning the matching outfits (thanks Big Give!) and stuff like that. When we got home I was just so bummed out that the wonderful time was over!!!!! So now I love to participate in Big Give's for other families!!! lol

Tammy- Im hoping my Madison is okay!!! She is such a trooper though and I cant even imagine how hard it is on you girls!!! Big HUGS!!!!!

GREAT IDEA!!!! You could ask everyone to bring gifts to pay it forward if you had a party!

 

[billwendy]

GREAT IDEA!!!! You could ask everyone to bring gifts to pay it forward if you had a party!

Judy - you have some AWESOME Ideas girl!!!!!!!

 

[blessedmom4]

So this is what has been going on since I last did an update. Madison has continued to run low grade fevers and now has an ear infection. Doesn't sound to bad, right? Well, she has tubes in both ears so why is she getting ear infections? Isn't that the whole purpose of having tubes? That was my understanding. So we didn't know until last night that she has an ear infection. She starting crying because her ear was hurting and grandma and I just thought it was because we had washed her hair and water got in her ear. Side note - we are having to wash her hair with her laying on the kitchen counter so her cast doesn't get wet. Well, after getting done she was still crying because it was still hurting. She has a very high tolerance for pain, so I knew something was wrong. I took her temp (100.9) and gave her some Motrin for the pain. She was in grandmas room and she sent her out to me because it looked like to her that Madison had blood in her ear. I looked and yep there was blood in her right ear, so we head to the Children's Close to Home urgent care. Madison was freaking out the whole way there and didn't even want to go because she was afraid they were going to do surgery on her to put the tubes back in. She in now scared to death of being put the sleep. She hates the way it makes her feel. I kept telling her that even if the tubes had come out that they didn't do that kind of stuff at the urgent care.
Another side note - while at urgent care they have to evacuate the building because of a funny smell in one of the rooms and they call 911. Come to find out that someone had put a cigarette in the sharps container in one of the rooms.
We get to urgent care and they are packed. After a 2 hour wait we get back to see the doctor and he says her tube in her left ear is not in the ear drum where it is supposed to be. It is on the side laying in some wax. Her tube in the right ear is fine, but that is the ear she has an infection in. So the infection is sitting under the tube. He puts her on ear drops and says she is on enough other medicine he doesn't want to put her on anything else my mouth. So if she is already on enough medicine then how the hell did she get the ear infection? So now it gets even better. She wakes up this morning and says she can't hear out of her ears. It sounds all soft she says. She wants to go to school because she can hear a little bit. So we get up and get ready for school. She says it keeps coming and going. So I call her pediatrician and let them know what is going on and they see no need to see her about the hearing lose. So I call her immune doctor to let her know about the infection (because we are supposed to watch her closely if she gets an infection so it doesn't get in her blood) and her hearing lose and they don't seem to be to concerned either. I call her ENT because I am thinking she needs to be seen if for nothing else so he can see what is going on with the tube in her left ear. The nurse at the clinic says that it isn't an emergency, but he will give the doctors nurse the message. Oh and he also said not to expect an appointment anytime within the next several weeks. So I wait for the doctors nurse to call me back. In the mean time I send her doctor at NIH an e-mail to let her know what is going on and to make sure she doesn't think Madison needs to be on an oral antibiotic. She e-mails me back and says to keep an eye on her and if the pain and drainage continues let her know and she will get her on something orally. So at this point I am really feeling like nobody gives a crap about what is going on with her even though it is all of them who keep telling me that they want to know when she gets an infection. I am just wanting to take Madison and run away somewhere and forget all about the doctors, medicine and treatments. All of this is starting to effect her also. She crys because she doesn't understand why she keeps getting sick if she takes all this medicine and gets an infusion once a month. She wants to know why her bones keep breaking if she is getting the infusion to help her bones. How am I supposed to help her understand if I don't know the answers myself and nobody will explain it to me? So I am done with it all. I just want to refuse that any of it is even happening, but I can't because if I do who will take care of her? If we stop it all then what will happen? How do I continue to put her through all of this with no explanation as to why it keeps happening if she is doing all that the doctors are telling her to do?

I HATE JOB'S SYNDROME I HATE JOB'S SYNDROME I HATE JOB'S SYNDROME

So finally I get a call back from the nurse for Madison's ENT doctor and he wants to see her Monday morning. Good news right? Well we will see. When I tell Madison she is not going to be happy because all she is going to think is that he is going to want to put the tube back in and fix the one in the right ear. Oh by the way the one in the right ear IS in the drum where it is supposed to be however it is falling out as well. So what am I supposed to do? Do I tell her? I have to because she will figure it out when we get there anyway. Do I tell her she isn't going to have to have tubes put back in? I can't lie to her and I don't know what he is going to want to do. So I will continue to watch her until we go and will tell her Sunday evening about the appointment Monday morning. Give her some peace for a few days or at least not add to her frustration right now.
I don't know what I will ever do if she comes to me and wants to stop it all. She has already wanted to stop taking her meds because she says they don't work anyway. I feel the same way, but don't tell her that. I tell her that if she stops her meds then she could get worse and be in the hospital more. It is working for now, but I know her and it will not work forever.
So we continue to go through the motion of the day and hope and pray that nothing new comes about. At least until we figure this one out. Not sure how much more I can take and even scarier not sure how much more she can take. Why does a 7 year old have to go through all this ****? Just give it all to me.

Praying for Madison and for all of you. Lisa broke two different bones in her arm last New Year's Day, was hospitalized for two days and she still has an 8 inch scar. We had to bathe her on the counter as well (Bandit was such a comfort during that time, he would lie on her while we washed her and her hair), because the cast went from her fingers to her shoulder. She had strep throat twice, tonsillitis, and double ear infections twice and also Mono while she had the cast on. They finally took the cast off after 10 weeks; however, she wore the arm brace until mid June...It wasn't fun and I don't envy you. When so much is going on it can be so tiring and overwhelming. I hope you feel the strength of so many lifting you up and praying!

 

[blessedmom4]

Judy - you have some AWESOME Ideas girl!!!!!!!

Thank you! So do you!!!

 

[billwendy]

Hey Tammy - can you get a cast cover for Madison's arm????? they are pretty airtight!! might make bathing easier!

 

[blessedmom4]

Hey Tammy - can you get a cast cover for Madison's arm????? they are pretty airtight!! might make bathing easier!

Wendy, where could she find one? We finally used bread bags, because we couldn't seem to find one and then when we finally did find a place to order from, we had gotten used to our makeshift ones...this was once Lisa was stable enough to sit in the water...

 

[billwendy]

Wendy, where could she find one? We finally used bread bags, because we couldn't seem to find one and then when we finally did find a place to order from, we had gotten used to our makeshift ones...this was once Lisa was stable enough to sit in the water...

A ton of different places have them, all you have to do is google waterproof cast cover. They range in price from 30-50 dollars, but are worth every penny!!!! lol A lot of places have free quick shipping too!!!!

 

[blessedmom4]

A ton of different places have them, all you have to do is google waterproof cast cover. They range in price from 30-50 dollars, but are worth every penny!!!! lol A lot of places have free quick shipping too!!!!

We were too cheap when we finally found it (it was around $50~DH said the bread bag was fine. I had been trying places like Walgreen's without success).

(And I just read about the butt cheek ).

 

[Tonyababyrn]

Hi everybody!!

I just started Trace's PTR here:http://www.disboards.com/showthread.php?p=40244930#post40244930

Really looking forward to getting to know everyone.

Trace was diagnosed with Cystic Mucoepidermoid Carcinoma of the Right Parotid Gland on August 5, 2010 at the age of 11. We went to MD Anderson in Houston, TX for treatment as this is a cancer most often found in middle aged women. He has had 2 surgeries to remove the tumor, gland and 19 lymph nodes down his neck and is now considered cancer free. Since the tumor was cut into with the 1st surgery, he has scans and lab work every 3 months to check for reoccurrence from any little cell that decided to "swim" away and attached nearby. So far, so good. First post-op scan was Feb 23rd and was all clear. He gets major "scanxiety" with nightmares, tummy upset and agitation.

Trace was granted a wish with MAW in January and we are tentatively scheduled for mid June...waiting for confirmation. His official wish was to stay at Animal Kingdom lodge so he could watch the animals from his room, but MAW said that it was a separate wish and would be a shorter stay and that if he would consider staying at GKTW, they would try to arrange for him to do the Behind the Scenes/Safari Tour which is only open to 16 and older. So really hoping they can pull that off...he would LOVE it. He really enjoys zoos and animals and would visit the Houston Zoo every time we went for checkups if we agreed.

He REALLY wanted his older sister, who is 22 to be able to go with us, but that was a no-go with MAW. It's not his fault I decided to have my kids 5 yrs apart!! So, we are making arrangements for her to fly over when she can to meet up with us and we will stay a few days more with her and then come home together.

On a side note.... I saw a plea on facebook for volunteers for the Louisiana chapter of MAW, so hubby and I signed up to be wish granters. We went for training and are no officially wish granters for our area of the state. So excited to help make dreams come true...but also so saddened that there are so many children that are eligible. Outta be a law against cancer!!!

 

[billwendy]

We were too cheap when we finally found it (it was around $50~DH said the bread bag was fine. I had been trying places like Walgreen's without success).

(And I just read about the butt cheek ).

Sometimes more of a local drug store will carry them (not a chain store). Also, you can try calling the hospital where you got the cast. I know our hospital (duPont Hospital for Children) carries them from time to time. I think everyone who gets a cast should get one!! I mean COME ON!!!!!!!