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

[blessedmom4]

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!!!!!!!

I agree...but sometimes DH is stubborn and the bread bags did work! The hospital nor the MD office carried them ...I think if they had, and he could have seen one, I would have stood a better chance. The good news was I made him help me!

 

[blessedmom4]

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!!!

Welcome!!! ( actually already found your PTR)

MAW will not pay for your 22 year old??? Now I am worried, they have never told us our 20 year old can't go!! Does anyone else know about this??? We can't afford to pay for Christian to join us (remember my DH is the one who didn't want to pay for the cast cover) and one reason we have put off our trip is because he is part of the family and has been through all of the horrible stuff with her the past eight years! Now I am bummed out...Did anyone else have a problem, our wish granters have never said anything...

Sorry for highjacking your post, and again WELCOME!!!!

 

[Tonyababyrn]

Welcome!!! ( actually already found your PTR)

MAW will not pay for your 22 year old??? Now I am worried, they have never told us our 20 year old can't go!! Does anyone else know about this??? We can't afford to pay for Christian to join us and one reason we have put off our trip is because he is part of the family and has been through all of the horrible stuff with her the past eight years! Now I am bummed out...Did anyone else have a problem, our wish granters have never said anything...

Sorry for highjacking your post, and again WELCOME!!!!

We were told up to age 18 for siblings, unless it's an only child. I know every chapter is different. I'd check with your wish granters. Really hope he is able to travel with you.

 

[blessedmom4]

We were told up to age 18 for siblings, unless it's an only child. I know every chapter is different. I'd check with your wish granters. Really hope he is able to travel with you.

I will check! Is your 22 year old still in college? That might make a difference for our chapter as well??? Now I feel the need to know if anyone else has had a child over 18 and NOT the only sibling who was able to go...ANY thoughts are appreciated, it takes our Wish Granters a few days to answer sometimes...

 

[Tonyababyrn]

I will check! Is your 22 year old still in college? That might make a difference for our chapter as well??? Now I feel the need to know if anyone else has had a child over 18 and NOT the only sibling who was able to go...ANY thoughts are appreciated, it takes our Wish Granters a few days to answer sometimes...

Yes, she is. She is in grad-school.

 

[Bill_Lin]

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.

Typically, the expense check is give at a Send Off Party, so I am not sure when they would get yours too you, but probably only a few days in advance.

 

[Bill_Lin]

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.

It is perfectly normal, and to be expected that "feelings" of depression follow a wish trip. This is caused, not only by leaving the magical place to return to the daily challenges of life in the ordinary realm, but also by the very real phenomenon of adrenaline deficit. You use up a lot of adrenaline due to the intensity of each day of the trip. Adrenaline is consumed, not only during negative crises, but in any intense experience, even magical ones. It takes the body a matter of weeks to build a reserve back up and balance out its chemistry. Be patient with yourself about this.

A helpful hint: Keeping the magic alive can really help through this temporary down phase. Try watching the trip or planning videos, look through the trip picks, or visit websites about the places you went. One thing that helped me a lot was visiting this thread daily for a while.

BIll

 

[blessedmom4]

Yes, she is. She is in grad-school.

UGHHHHH...I am going to ask; however, SURELY if this was an issue they would have already told us...

 

[Loodlow]

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!!!

Welcome! I am from Louisiana too, which part are you from? I talked to Maria about organizing volunteer training up here in the north part, but have not gotten it done yet. My fault-not hers. I am going on a wish trip this month, I am the nurse!

 

[blessedmom4]

Welcome! I am from Louisiana too, which part are you from? I talked to Maria about organizing volunteer training up here in the north part, but have not gotten it done yet. My fault-not hers. I am going on a wish trip this month, I am the nurse!

I WONDERED if you had a MAW trip planned...How WONDERFUL they get to have you as their nurse for the trip...Have an AMAZING TIME!!!!

 

[Tonyababyrn]

Welcome! I am from Louisiana too, which part are you from? I talked to Maria about organizing volunteer training up here in the north part, but have not gotten it done yet. My fault-not hers. I am going on a wish trip this month, I am the nurse!

We are just south of Alexandria. We went to Shreveport for the training in January. Were you there??

 

[syammt]

Wow, I am so sorry I cannot even imagine what she (and you) have to go through. I cannot believe that her ear infection and hearing loss does not seem urgent to any of those doctors! I hope you can get her in to someone soon and that something is done to help.

She is still having some hearing lose in her right ear and when she can hear she says she hears her shunt moving in her ear. If it keeps up we will be at the hospital all day tomorrow for some other appointments and I guess we will be making a trip down to the ER so they can call the ENT on call to see her.

So tough for a kid to understand--and so difficult for a parent to try to explain. All you want to do is make your kid feel better!

Thinking of Madison and your family and hoping these issues get resolved quickly and that she feels better soon!

Thank you so much.

Oh no! That sounds so frustrating! And painful for all of you guys.

I will keep praying for you guys.

I have no idea what to tell you re: what to tell her...?? Our rule of thumb is to not give out more information than they specifically ask - so we don't tell the kids anything at all. But we don't lie if they ask, either.

I am sure she would be sicker if she was not on any antibiotics? Right? And surely that medicine for her bones works at least some?

So sorry you are going through all of that. Keep fighting for her! Unfortunately you can't count on the doctors to be as passionate as you are...they just can't with so many patients to see...none of them spend hours thinking about your child, I guess...so it is really up to "us" - parents, caregivers, friends - to fight for them.

Bless your heart! Here is a big skittles hug!

Thank you so much for the prayers. I will always fight for her no matter what. I have told her all that stuff about if she wasn't on the all the meds she would be sicker, but she doesn't care. She just wants to not be sick and not have any broken bones.

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

Thanks!

Thank you.

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.

You are so right. I feel like I have taken so many steps backwards that I have past myself. Staying strong for while she is around, but when she isn't now that is a different story. Thanks for the comment.

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!!!!!

She is a trooper and it is getting hard for her now. I will for sure let her know Wendy sent her hugs. She will love it. Thanks.

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!

Thanks for the prayers. They really do mean a lot. It is so nice to have a place to share what is going on with her where people actually care.

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

Going to look for one of those.

 

[blessedmom4]

She is still having some hearing lose in her right ear and when she can hear she says she hears her shunt moving in her ear. If it keeps up we will be at the hospital all day tomorrow for some other appointments and I guess we will be making a trip down to the ER so they can call the ENT on call to see her.
God Bless her heart! And Yours!!!!

Thank you so much for the prayers. I will always fight for her no matter what. I have told her all that stuff about if she wasn't on the all the meds she would be sicker, but she doesn't care. She just wants to not be sick and not have any broken bones.
I don't blame her!!!!

You are so right. I feel like I have taken so many steps backwards that I have past myself. Staying strong for while she is around, but when she isn't now that is a different story. Thanks for the comment.
God Bless you!!!

Thanks for the prayers. They really do mean a lot. It is so nice to have a place to share what is going on with her where people actually care.

I truly DO care!!!

Going to look for one of those.

It IS a great idea!

 

[LVMom23]

Wendy, where could she find one?

This is a great idea! We had a friend whose son had a really cool camo one last year. I am pretty sure she got it online too, and I don't think it was near $50. If you want me to send her a message and ask where, just let me know!

 

[Mom2mitokids]

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.

Sounds like a perforated ear drum. Kylee has 2 set of tubes and she can still get perforated ear drum infections(6 of them). Her hearing will come back once the infection clears up. Sometimes it can take a month or more. ((HUGS))

 

[Mom2mitokids]

We are carry on all our medical supplies. It's going to take a whole suitcase. My questions is...Kylee gets prune juice mixed with her formula. I just bought those 4 oz gerber ones. Can I put those with our medical supplies since it's for medical reason? I also need to bring some enemas..just in case. Can I bring those too?

 

[syammt]

Sounds like a perforated ear drum. Kylee has 2 set of tubes and she can still get perforated ear drum infections(6 of them). Her hearing will come back once the infection clears up. Sometimes it can take a month or more. ((HUGS))

Thanks for the info, but I have to say that if her hearing doesn't come back soon (like tomorrow) she is going to hurt someone. She walked around all night with her head tilted to one side and kept saying her hear was stupid.

 

[twinmum]

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.

Oh yes, I feel your pain...and our trip was >2 years ago! Our son's Wish Trip happened during a major renovation to make our house accessible for him. We were actually moved out and into a rental while we were away! The "excitement" of unpacking and settling in, plus all the reno decisions etc distracted me to some extent, but "feeling low" is natural.

While it was too crazy for us at the time and I did not complete our TR (still regret that!), I found that coming onto this thread and helping other families with their planning helped me keep the memories alive.

 

[blessedmom4]

Oh yes, I feel your pain...and our trip was >2 years ago! Our son's Wish Trip happened during a major renovation to make our house accessible for him. We were actually moved out and into a rental while we were away! The "excitement" of unpacking and settling in, plus all the reno decisions etc distracted me to some extent, but "feeling low" is natural.

While it was too crazy for us at the time and I did not complete our TR (still regret that!), I found that coming onto this thread and helping other families with their planning helped me keep the memories alive.

I ***THINK*** you could re-open the TR if you wanted to...others have... I would LOVE to read the rest of it!!!

 

[brookerene]

I agree! Restart it!