Going to see Maleficent - Sweet Sophie's MAW 8/23-8/31 Pre-Trip Report

[cantwaittoseemickey]

Hello! I just found your thread today. I haven't had alot of time to Dis lately so I peaked in. Your girls are precious!! How wonderful your daughter gets a MAW trip to Disney! I am so sorry for all that she and her sister has gone through. It is sometimes just as rough on the siblings as they get shuffled around as it is on the kiddo that has to go through the tests and procedures. How sweet that grandma wants to go with you on your trip. I loved the video of the surprise trip to Disney World!

We are a former Wish trip family. We went in 2010 and it was an amazing trip. When things get tough we think about Ty's trip. We get out pictures and relive it all over again. Our son has a Mitochondrial Disorder. He was 10 at the time of his trip and is now 14. I look forward to following your thread and hopefully trip report

 

[greenjellybean]

I just read the whole thread today. Found it this afternoon and had to go run errands for a Father's Day/ Dad's Birthday Celebration tonight. I didn't even close the link because I was afraid I wouldn't be able to find it again. Is there some way to follow it? I see that people write following but is there a way to follow it? I've posted a few times but never really interacted much. I found the pod casts last year and when I went to sign up for an account realized I already had one. Lately I have been spending more time on the boards reading posts.

I can relate to your posts in many ways. When I was in college I did a Disney Internship and Advanced Internship. My advanced internship was in spring 2000. I gave tours around the parks to school groups. During my Jan-June internship I had over a 100 hours of volunteer time at Give Kids the World. Both girls are going to love it. I hope they love ice cream. You get to have as much ice cream as you want. I would also be sure to schedule a tuck in one night at the village. The Mayor of the village is a bunny rabbit, Mayor Clayton. He will come to the villas and put the kids to bed. I have seen him cause some fun pillow fights. The village has changed so much since my time there but be prepared for the time of your life. You could easily spend a day just doing things in the village. One thing that I like about the village is that both the kids are for the most part treated the same. Sometimes it can be hard when one child is sick and one is not. When I was there the only thing that the wish child did that siblings didn't was put their name on a star that gets hung. They used to leave presents in the villas for all the kids when you came back from the parks.

When I left my internship I missed all the kids so I volunteered as a wish Granter for MAW. I got to me on the other side of the wish. I think it has been about 7 years since I did a wish. What I can tell you about MAW is that MAW differs by chapters on certain things. I had a wish where the girl brought her boyfriend along. It really depends on the situation. The girl was 18 and her boyfriend had been with her for all her treatments so she asked that the boyfriend go with her parents(Mom, Step Dad, dad)on the trip to HI. MAW of NH said that if the person was involved with the treatment in some way they would include them. Also in 9/10 A family I was very close to took their 4 year old daughter to Disney on her MAW. She was sent by MAW of Maine and she got to take a very special 12 year old friend with her. I think those decisions are made by chapter. Since I volunteered with NH MAW and my friend's were sent by MAW of Maine I did notice some differences. I was very surprised to hear that your MAW said travel was limited. We never told any of the families I worked with something like that. The reason they want 2 wishes is in case the dr. won't let them travel or they can't grant their first wish. There are some restrictions on giving pets and building structures like in ground pools. That can become a legal thing. None of the chapters are allowed to do hunting wishes.
I'm planning to in box you a message with some more resources. I loved all the pictures of the girls. I don't know what Sophie was worried about. All the pictures you posted of both the girls are very precious. I did want to say I'm glad the girls loved camp. Now Savanna can see that she did what she thought she couldn't do. Hopefully that builds up her confidence. It can be hard on everyone when these things happen. I can see how what happened with her sister could have increased her anxiety. So much was out of her control. Has Savanna been able to go to a treatment visit with Sophie? Sometimes it helps if the siblings can go so they see what is happening. Is child life involved? I know big hospital have child life that can be a great help. If Savanna goes to a visit perhaps child life can meet with her and explain. O.k I will inbox you and hopefully I can figure out how to "follow" the post.

Bless you for having read all of my ramblings! I think the way you follow a thread is to go to the top right hand side where there is a tab labeled Thread Tools. If you click on it, you have the option of 'subscribing' to the thread and that's how you follow someone.

Sounds like you have had some AMAZING opportunities!! How awesome to have time to serve at GKTW AND MAW!!! Very cool stuff. I can only imagine how uplifting that must be!!! I appreciate the input! Sounds like it may differ dramatically from state to state? One of Sophie's MAW contacts came by earlier this week and mentioned that our MAW Chapter in SC doesn't provide the rental car once you arrive in FL. I certainly didn't complain, but I'm confident that will never fly with DH. He doesn't even like to ride with other people bc he wants to have his own vehicle at his disposal whenever he might need it. Control freak much? J/K! He just doesn't want to have to rely on anyone else for something he might need.

Please feel free to inbox me anytime for any reason and I'll get back to you asap.

Hello! I just found your thread today. I haven't had alot of time to Dis lately so I peaked in. Your girls are precious!! How wonderful your daughter gets a MAW trip to Disney! I am so sorry for all that she and her sister has gone through. It is sometimes just as rough on the siblings as they get shuffled around as it is on the kiddo that has to go through the tests and procedures. How sweet that grandma wants to go with you on your trip. I loved the video of the surprise trip to Disney World!

We are a former Wish trip family. We went in 2010 and it was an amazing trip. When things get tough we think about Ty's trip. We get out pictures and relive it all over again. Our son has a Mitochondrial Disorder. He was 10 at the time of his trip and is now 14. I look forward to following your thread and hopefully trip report

Thank you!! I think they are precious too, but I suppose I'm partial and slightly biased! It is rough on the siblings and their feelings and struggles often go unnoticed in light of their sibling's life threatening issue. She's really been forced outside of her comfort zone and that is a HUGE deal for her. She's really worked hard to help us and I couldn't be prouder or more grateful!

I love meeting other Wish families! I have great hope for our trip, to hear that you use memories from your time there and pictures to lift your spirits during hard times! I'm not familiar with Mitochondrial Disorder. I can guess, but you'll have to clue me in. How is he doing now? I hope well!

And I'm glad you are following along! I'll try to make it somewhat interesting!

 

[greenjellybean]

I'm REALLY enjoying summer and I'm NOT looking forward to autumn returning. Autumn is my favorite season! I usually love the start of a new school year, the change in weather, the trees changing color. College Football! Halloween, Thanksgiving and Christmas all in a row. It really is my favorite time of year!

But I've REALLY appreciated that Sophie doesn't miss anything the week after chemo. She can be uncomfortable and in pain and we can stay home and let her rest. Nausea? Not a problem. Get a little Zofran in her and let her rest until it passes. Bad night with lots of discomfort and little sleep? No worries! She can sleep in and take it easy. Won't be able to do that next year. May not be true, but I think part of the reason Sophie's been hospitalized only once since starting chemo is that we were able to keep her schedule kind of quiet.

*Background info* Because she was originally misdiagnosed at MUSC in October and there was so much damage to her skull, she was out of school for seven weeks with a picc line in place and antibiotics. Then she missed another week right after all of that while she was hospitalized for more testing and another surgery. And she missed more school after the correct diagnosis of LCH and while she did her induction phase of chemo. All in all, Sophie missed over 80 days of school. We are VERY fortunate that not only was the school district willing to go with intermittent homebound, but that her 2nd grade teacher was willing to make up every hour with her. She is, in fact, sitting with Sophie right now at the table making up two of the final six hours. Yay!!


Since we were making up so many hours, her teacher and I made a plan. Sophie would go for half a day and go home and rest, then meet with her teacher again at school in the afternoons for as many hours could be arranged for that day. This worked out GREAT because it gave Sophie time to rest in the middle of the day. And because Sophie was already on intermittent homebound, if she felt really bad, I let her stay home. I wasn't working either, so it wasn't a worry.

We may not have that choice next year. Trying to go without intermittent homebound next year and I'm trying to return to work part time (Tuesday through Thursday). Moving chemo days to Fridays as often as possible so that gives her Saturday and Sunday to rest. I guess we'll see.

Mrs. Lois, one of our MAW contacts, came to visit us last week. It was a nice quiet visit and I got to just visit and get to know her a little. She's so very sweet and a huge animal lover! She brought Sophie a MAW Barbie and a tee shirt and took some pictures of her for the local chapter's brochure. And she was even so kind as to include my older daughter Savannah and brought her some gummy bears and a pack of Reeces Peanut Butter Cups! I really appreciated that!!


Mrs. Lois taking Sophie's pic


Sophie LOVES the MAW Barbie


Savannah LOVES the peanut butter cups

 

[cantwaittoseemickey]

Oh I love her Barbie!! How nice of her to include her sister. I hope next year is better!

 

[greenjellybean]

Oh I love her Barbie!! How nice of her to include her sister. I hope next year is better!

I LOVE the Barbie, too!! So sweet of her MAW contact to bring her one! And I'm so so grateful that she included Savannah!! Means everything to me because she is often left out.

 

[greenjellybean]

There was a surprise waiting for Sophie when we got to the clinic on the 3rd for Sophie's 14th chemo treatment.

One of the archary instructors at Camp Kemo was wearing a cross necklace that apparently Sophie was interested in. Well Brock sent Sophie not only a sweet letter, but two pictures and a necklace of her own! She IMMEDIATELY put it on and sent him an email! She was thrilled. For anyone interested, you can find him on Facebook under Eric's Crosses.

 

[greenjellybean]

So it's been a busy couple of weeks, which is why I haven't updated, much less even tried to catch up on anyone else. In which case, I most definitely apologize. I am VERY interested in what others are experiencing and their stories, but I've been so busy and haven't taken the time to check in with other wish families lately. If you are one of those families, I will check in asap!

Most exciting news first... we have DATES!!!! MUCH earlier than I was anticipating. I knew the funds had to be raised first and that put me under the impression that we may be looking at something as late as November. No worries mind you. I just noticed there were so many families on here that seemed to have dates for September already so I was sure we would be looking at a later date. Nope, We are looking to make Sophie's MAW trip AUGUST 22-30 (the last couple of days are on us... we just wanted to have the chance to STOP and rest before coming home and getting right back into the mix of daily life)! I can't believe it. My mom wasn't expecting that soon either, so now we are just trying to see if she can still make it. A little worried about the crowds and the heat. Mostly worried about the crowds.

My DH had an accident while bike riding during his lunch break last week and managed to break his arm. But he seems to be handling it well. Other than the occasional complaint that he REALLY wants this cast off, he's doing well. Since his arm is broken, he is out on disability. Not exactly what we want considering we have medical bills, but just like those, it will be okay. We'll get through it. God is good and I choose to have faith.

I'm thinking this might be for the best because there is a chance that DH may still be out on medical leave when we are currently scheduled to go. If that's the case, there won't be any issue with his employer trying to deny him the time off to go, so like I said, this may be a really good thing.

And just a little side note. Last weekend we were invited to participate in a wonderful experience. A little camp called Camp Debbie Lou invites approximately 5-7 families out from Thursday to Sunday twice every summer to enjoy just getting away from it all. There were go cart races, horse riding, paddle boats, fishing, swimming and crafts. More food than I could ever want (and that's allot of food, folks) and more than enough caring wonderful counselors to take care of our children's every need, so that if we had wanted to, we could have stayed in the bed all day and not lifted a finger for them. We, naturally, did almost everything the kids did because we wanted to, but we COULD have. It was such a wonderful experience (I fell in love with the counselors and other families) that I cried half the way home and immediately found as many as I could on FB upon returning. FWIW, I'm not stalking them, they accepted my friend requests.

Pictures from Camp Debbie Lou:

Family Go Cart Racing! Sophie actually won the race! It's almost as if she got an extra 'push' at the start of the race!


Horseback riding (this is Peanut Sophie is riding and she loves him)!


The girls made some wonderful friends...and so did we! What a blessing!!


Anyway, Sophie has chemo coming up in a week. On the 24th, I believe. Hopeful that all her labs will be good and we will get chemo number 15 under our belts and behind us!





Oh.... and it's my birthday tomorrow.

 

[Alicenwonderment]

So it's been a busy couple of weeks, which is why I haven't updated, much less even tried to catch up on anyone else. In which case, I most definitely apologize. I am VERY interested in what others are experiencing and their stories, but I've been so busy and haven't taken the time to check in with other wish families lately. If you are one of those families, I will check in asap!

Most exciting news first... we have DATES!!!! MUCH earlier than I was anticipating. I knew the funds had to be raised first and that put me under the impression that we may be looking at something as late as November. No worries mind you. I just noticed there were so many families on here that seemed to have dates for September already so I was sure we would be looking at a later date. Nope, We are looking to make Sophie's MAW trip AUGUST 22-30 (the last couple of days are on us... we just wanted to have the chance to STOP and rest before coming home and getting right back into the mix of daily life)! I can't believe it. My mom wasn't expecting that soon either, so now we are just trying to see if she can still make it. A little worried about the crowds and the heat. Mostly worried about the crowds.

My DH had an accident while bike riding during his lunch break last week and managed to break his arm. But he seems to be handling it well. Other than the occasional complaint that he REALLY wants this cast off, he's doing well. Since his arm is broken, he is out on disability. Not exactly what we want considering we have medical bills, but just like those, it will be okay. We'll get through it. God is good and I choose to have faith.

I'm thinking this might be for the best because there is a chance that DH may still be out on medical leave when we are currently scheduled to go. If that's the case, there won't be any issue with his employer trying to deny him the time off to go, so like I said, this may be a really good thing.

And just a little side note. Last weekend we were invited to participate in a wonderful experience. A little camp called Camp Debbie Lou invites approximately 5-7 families out from Thursday to Sunday twice every summer to enjoy just getting away from it all. There were go cart races, horse riding, paddle boats, fishing, swimming and crafts. More food than I could ever want (and that's allot of food, folks) and more than enough caring wonderful counselors to take care of our children's every need, so that if we had wanted to, we could have stayed in the bed all day and not lifted a finger for them. We, naturally, did almost everything the kids did because we wanted to, but we COULD have. It was such a wonderful experience (I fell in love with the counselors and other families) that I cried half the way home and immediately found as many as I could on FB upon returning. FWIW, I'm not stalking them, they accepted my friend requests.

Pictures from Camp Debbie Lou:

Family Go Cart Racing! Sophie actually won the race! It's almost as if she got an extra 'push' at the start of the race!


Horseback riding (this is Peanut Sophie is riding and she loves him)!


The girls made some wonderful friends...and so did we! What a blessing!!


Anyway, Sophie has chemo coming up in a week. On the 24th, I believe. Hopeful that all her labs will be good and we will get chemo number 15 under our belts and behind us!





Oh.... and it's my birthday tomorrow.

Happy Birthday to you!!! I hope you can do something fun. I'm sorry to hear about your husband's accident. I'm glad the girl had fun at camp. Can you pm me your address?

 

[greenjellybean]

Happy Birthday to you!!! I hope you can do something fun. I'm sorry to hear about your husband's accident. I'm glad the girl had fun at camp. Can you pm me your address?

Thank you! It was a great day. The girls brought me flowers that are still blooming! I sent a PM y to you. ☺

Dates have changed to the 23rd-31st. She still doesn't know so hoping to surprise her soon!

 

[moe10378]

Woah!!!! Your trip is coming up soon!!!! Read your report, and following!! You all are going to have an amazing time!!! Hope you will write a trip report!!!

 

[greenjellybean]

Woah!!!! Your trip is coming up soon!!!! Read your report, and following!! You all are going to have an amazing time!!! Hope you will write a trip report!!!

Hey moe10378! Glad to hear from you! My goal is to do a trip report and it's high on my list to complete. Think it will be great way to memorialize our trip. ANY tips anyone has on how to capture those memories down while ON THE TRIP so you can really get them down on paper later? I'd be really grateful! !!

 

[opusone]

Hey moe10378! Glad to hear from you! My goal is to do a trip report and it's high on my list to complete. Think it will be great way to memorialize our trip. ANY tips anyone has on how to capture those memories down while ON THE TRIP so you can really get them down on paper later? I'd be really grateful! !!

If you have a smart phone, you can just jot quick notes (e.g. in Notes on an iPhone), record quick voice memos, and/or take a quick pictures/video during the day to remind you of specific things. Then, in the evening before you go to sleep, read/listen/look at all these quick items, and write a little outline for the day.

We will be there the same week you are. Here's hoping for good weather!

 

[moe10378]

Hey moe10378! Glad to hear from you! My goal is to do a trip report and it's high on my list to complete. Think it will be great way to memorialize our trip. ANY tips anyone has on how to capture those memories down while ON THE TRIP so you can really get them down on paper later? I'd be really grateful! !!

I agree! One thing that helped jog my memory was pics. I'm always taking pics. I also posted quick posts on fb, and was able to go back to that! The pics is what really helped me. We took about 3,000 pics lol! That's between all of us though, not just me!

 

[greenjellybean]

Just found out my friend's son has only weeks left, at best. My heart is broken for her. Cancer sucks.

 

[ZehnJahren]

Hey moe10378! Glad to hear from you! My goal is to do a trip report and it's high on my list to complete. Think it will be great way to memorialize our trip. ANY tips anyone has on how to capture those memories down while ON THE TRIP so you can really get them down on paper later? I'd be really grateful! !!

Take a small notebook with you - and I do mean small, you won't need much room - and a pen. Label the page with the date and day, and when you sit down for a break or for a snack or meal, jot down a few phrases or things you did that day. If you don't get a chance during the day, do it right before you head to bed - it only takes a few minutes to write out your favorite parts of the day. Then when you look at your pictures when you get home, you can match up the pictures by day to the notes you took!

I just sat and read your whole thread; I hope you guys have a great trip. You will have low crowds - and heat, yes, but there are plenty of places to get cooled down. It will be a good time for you to go.

I'm so very sorry to hear about your friend's son. Cancer does suck.

 

[gracer9977]

Just found your thread and read the whole thing. I am so sorry that Sophie and Savannah are going through so much. It just sucks when kids get sick and have to go through chemo and live in and out of the hospitals. It is wonderful to see that you are all doing as best as you can with the circumstances you are given.

Wow so are leaving for Disney in a few days. How exciting!!!! I have never been in August but I have a friend who is there right now and she said the crowds are not a problem and they are getting to see and do everything they want.

I love all the pictures that you post and your girls are beautiful!!!

Savannah looks like she is so much happier after her trip to Camp Kemo and the camp you went to as a family. Hopefully she is having a better time and is less anxious.

Looking forward to more updates and will definitely read your TR if you write one about this trip.

I am sorry to hear about your friend's son. No parent should ever outlive a child and I am so very sorry that she is going through this. A friend of mine just lost her 9 year old son to cancer. Such a vicious disease!!!!

 

[moe10378]

Just found out my friend's son has only weeks left, at best. My heart is broken for her. Cancer sucks.

Cancer does suck! I'm praying for your friends baby, and for the family. So sad....