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

[greenjellybean]

Going in for chemo this morning. We are doing great fairly good. We have our good days and our bad days.

This past Saturday was the Red Carpet Event at the Children's Hospital. It's a semi formal dance. Started several years ago as a prom substitute, but they thought everyone can use some fun and opened it to all age groups. Sophie lasted almost 2 hours before she had to call it quits. She was staying as long as she could.

 

[greenjellybean]

Sophie's lab work came back showing great numbers, so chemo number 11 is DONE! Woohoo!

Now for the not so good news. Her doctor recommends that we extend her chemo treatments until December. It should reduce the chance of any central nervous system involvement, especially later down the road.

The news was not completely unexpected, so Scott and I are not shocked. Disappointed, but not shocked. I'm sure there are plenty of parents reading this now with a precious child receiving chemo and would LOVE to hear that they only have to do a year. But mostly, I'm saddened for Sophie.

Sophie was devastated and sorely disappointed. It's hard when your child asks you why her life is so hard. She's only seven and she doesn't have the awareness to realize fully that it could be so much worse. She has been planning her end of chemo party, which would have been in June. She wanted purple and yellow streamers and balloons and cupcakes. I had the idea of inviting friends and family over to bring a small toy to give to the Childrens Cancer Center to donate (which she LOVED until she realized that I meant that should be the ONLY gift they bring .... lol, she's usually generous but I must have exceeded her limit on that suggestion or asked on a bad day). I reassured her that we could still do an end of chemo party. But it would be in December instead of June.

I also reassured her that I'm sure if MAW grants her wish to go to WDW and the trip is scheduled during her chemo it will be fine and we won't request to reschedule it for another time. I have to admit one of the main reasons why we wanted to schedule it for September or October was because it would have given her plenty of time to get over the effects of the chemo and gain some stamina, but it is what it is and we'll get over it and deal. Considerably worse things to deal with.

The best news is that God is in control and always had been. And I trust that He continues to guide her team of doctors and nurses in her best interest.

If by some chance you are already, please continue to pray for our family. And if you haven't, we would certainly appreciate anyone willing to say a quick prayer for patience for her father and I and for our finances. Pray for my older daughter who still struggles with anxiety (which seems to have gotten worse since this all started...she's going to see a counselor soon) and especially for Sophie. That she continues to respond to the chemo without suffering too many side effects and her spirit isn't crushed. If nothing else, I desperately want her to take from this as many positive things as she can.

Many many thanks!

BTW, picture I managed to get of her yesterday while we were waiting on lab work to come back. She is pretty grumpy as soon as we walk through the doors of the hospital and stays that way until we leave so I was SHOCKED to see it much less catch it on film!

 

[greenjellybean]

Talked to mom last night and she mentioned that she might be interested in joining us for Sophie's MAW trip! I'm thrilled bc never in a million years did I think any of our family members would actually want orbe ableto go!!

We originally requested September or October for several reasons. I think October is out now for us anyway. My sister's official due date with the twins is October 30th and she's probably not going to make it that long. So it will most likely be in the middle of October.

So it looks like it will have to be September. Can anyone tell me how, if you had a child going through chemo or another medical issue requiring lots of medical supervision, gping to WDW worked for you. Now I just want to take her so that she isn't exhausted which would be the week closest to getting chemo. That week before she's doing pretty good. That narrows our available trip weeks considerably.

 

[greenjellybean]

Sophie woke me up in the middle of the night last night to tell me,

"You are the best mom ever and I just don't know what I would ever do without you."

She then hugged my neck, kissed my cheek and rolled over to go to sleep.

Happy Mother's Day to me

Happy Mother's Day to everyone on the Disboards!!

PS. Haven't heard back from our head volunteer at MAW, but her assistant did email me back and said to let her know if we don't hear back from the other MAW volunteer. Lois is so sweet and offered to send Sophie a MAW Barbie doll. Sophie is really into Littlest Pet Shop stuff right now, but she goes through phases and I'm sure she'll make her way back to Barbie dolls. In fact, she has several she still pulls out and plays with, especially when she is lying down and resting. She'll be so excited!!

 

[jessg]

Hi I decided to swing by and snoop I just wanted to let you know you have a beautiful family I hope you hear back soon!

 

[starearedkid]

I don't know if this is relevant to your Disney question with chemo, we have NEVER been to Disney yet---but at least my daughter has NO exhaustion side effects from any of the chemo she has been on at all. Reese has just about completed two cycles of chemo, with all the chemo she has been on---lack of energy has never been a side effect. Pretty much everyone that sees her says that except for the hair loss, you would never suspect she is sick or on chemo.

Sophie might surprise you and be able to handle Disney soon after chemo

 

[greenjellybean]

Hi I decided to swing by and snoop I just wanted to let you know you have a beautiful family I hope you hear back soon!

You are welcome to come by and 'snoop' anytime! Glad you are following along!

 

[greenjellybean]

I don't know if this is relevant to your Disney question with chemo, we have NEVER been to Disney yet---but at least my daughter has NO exhaustion side effects from any of the chemo she has been on at all. Reese has just about completed two cycles of chemo, with all the chemo she has been on---lack of energy has never been a side effect. Pretty much everyone that sees her says that except for the hair loss, you would never suspect she is sick or on chemo.

Sophie might surprise you and be able to handle Disney soon after chemo

LOL! I swear Reese is made of the toughest stuff in the smallest package! I'm so very glad Reece is handling it so well and doesn't 'feel' ill!!! That is great!

Sophie does pretty good too, but it's the week before chemo that she is most like herself. She has more energy and is more even keel emotionally and doesn't seem to suffer from the stomach cramping and back, joint and chest pain like she does the week to two after chemo. The heartburn is definitely better and she just isn't tired as easily.

I hope you find the time and energy to complete a post trip report! I LOVE to hear others describe their first trip to WDW and most people seem to really enjoy it, but I have a feeling that your trip with Reese is going to be amazing!

 

[greenjellybean]

Haven't heard back regarding MAW yet, but, because I've read other trip reports, I know that isn't unusual. Just praying and hoping all is well. I would like to speak with them regarding the change in plans since we will have to work around chemo appointments.

Have both girls signed up for Camp Kemo! Sophie is tentatively excited and Savannah is terribly worried. Savannah has always had issues with anxiety, but all of the changes our family has enduring in the past six months has really taken its toll and brought her anxiety to the forefront. She told me Sunday that she often prayed that God would take her home because she was tired of being scared and worried all the time. I'm so grateful that she has her first appointment with a highly recommended counselor from a dear and trusted friend tomorrow at 5:30. Made the appointment a month ago.

Have Sophie's birthday coming up on the 23rd and she has chemo on the 22nd. Dance recital on the 25th that she has worked terribly hard to keep up with. DH recommended we hold a family party for her this weekend here at the house, which is fine, except I'm not exactly prepared for guests and it's short notice for the family we do invite. Besides, he isn't the one that has to do all the work.

Anyway, here are some more recent pictures. I sincerely doubt anyone cares to see THIS many pictures of my kids, but I'm using this as a sort of record for myself if nothing else. Perhaps I should attach a warning that this is a picture heavy thread.

Savannah from last week


Sophie from last week

 

[greenjellybean]

Today is Sophie's 8th Birthday!!



We are very happy to have it! Sophie had chemo yesterday. Everything is going well as far as that goes. Liver enzymes were a little high, but not high enough to postpone her chemo treatment. And last night was rough. She was very nauseous and it took me forever to finally convince her to take the zofran she has for that. Once she took it though, she felt much better.

Still haven't heard from MAW.

 

[Disneylvr]

Happy belated birthday to Sophie!

 

[greenjellybean]

Happy belated birthday to Sophie!

Thanks Disneylr! It was a good birthday I think, even if it was without a big party. Her daddy and I took her out that morning where ever she wanted to go shopping to spend her birthday money.

And for anyone that wants to know, her dance recital was great. Was VERY proud of her as she was tired and feeling poorly.
Have heard back from MAW regarding my inquiry. The response was that my mother CAN travel with us under the provision that she cover the expense of her park tickets, food, etc. : ) I'm HOPING that means that she can stay with us at GKTW, which is all we really wanted. I know GKTW is reserved for the wish family only and it would be sad to us to have my mom stay elsewhere the whole time. We would figure out a way to pay her way between us. Melissa didn't actually confirm that she would stay with us so I'm hesitant to celebrate just yet.

She also said we need to pick three time frames that will work around chemo dates. And unfortunately, I'm thinking no October since my sister is due on the 31st. I would normally feel safe scheduling that early in the month, but since she's carrying twins I'm not confident that due date is reliable. Anyone with experience with ANY of this is more than welcome to chime in and share your experience or advice! I would, in fact, be VERY GRATEFUL! TIA!!!!


Sophie with my dad (Papa) after her recital. He ALWAYS brings the girls flowers.

 

[greenjellybean]

Almost forgot to mention. I realize I'm not likely to get many, if any, responses to this inquiry on this thread, but I'm putting it out there anyway.

My oldest daughter, Savannah, started seeing a well qualified therapist recently. We sought Danielle out because she came so highly recommended and Savannah's anxiety has gone into overdrive. She spends WAY too much time crying and worrying and everything we have done hasn't been enough. I do not want this for my daughter and I'm willing to do whatever we need to.

That being said, Danielle came to me after her session with Savannah and told me that she 'suspects' Savannah may be high functioning Asperger's/ADHD. Said that there were several red flags that popped up in their time together and it would be wise to test her at a later date.

I have a cousin who's son has Asperger's, so I'm familiar with it, but wanted to know more. I have looked it up online and found she does indeed demonstrate many similar traits. I'm interested in hearing from anyone personally familiar with Asperger's and what your experience has been, especially in regards to WDW.

Again, I realize that's its unlikely I get a response, but I'm putting it out there anyway.

'Cause I'm a rebel.

 

[AAshleySEG]

Hi there! I just read your entire post! I feel like I have a very close connection with your story and daughter. When I was 11 years old I had Leukemia, so I went through all of the chemo, prednisone, I did lose all of my hair, etc. I was also fortunate enough to go on a Make-A-Wish trip to Give Kids the World when I was 12. I know that was in 1997, but at that time my grandparents went with us on that trip and even stayed in the same GKTW "Condo" if you can call them that.

It was a wonderful experience there, I still watch the "VHS" of that trip from time to time. That was the trip that really kick started my love of Disney World. I wish I could be more helpful of the way that GKTW works nowadays, but hopefully someone else will be able to help you!!

I hope you guys have an amazingly fun trip!

 

[greenjellybean]

Hi there! I just read your entire post! I feel like I have a very close connection with your story and daughter. When I was 11 years old I had Leukemia, so I went through all of the chemo, prednisone, I did lose all of my hair, etc. I was also fortunate enough to go on a Make-A-Wish trip to Give Kids the World when I was 12. I know that was in 1997, but at that time my grandparents went with us on that trip and even stayed in the same GKTW "Condo" if you can call them that.

It was a wonderful experience there, I still watch the "VHS" of that trip from time to time. That was the trip that really kick started my love of Disney World. I wish I could be more helpful of the way that GKTW works nowadays, but hopefully someone else will be able to help you!!

I hope you guys have an amazingly fun trip!

Bless your heart for reading ALL of that! I'm a talker and it comes across in my posts, I'm sure! First of all, I'm glad to hear that you are a survivor of Leukemia!!!! Congratulations! I can't imagine it ever gets old to hear that!

And thanks so much for sharing what your experience was. I'm really hoping they mean my mom can stay with us. Would mean so much to all of us (well... maybe not so much my DH ). Nah, just kidding, he loves my mom.

Sounded like you had a wonderful experience on your MAW trip. Makes me hopeful this will be the same for us. And I see you have a vacay coming up VERY soon! How exciting! I hope it's just as wonderful as your first Disney vacation!!

 

[scdak]

Just found you thread tonight and read it all, hello from a South Carolinan, I live a few miles from the Giant Peach (I will be nice and not let everyone reading know what its really called!) I hope the MAW trip is revealed to you soon and then the fun planning can start!

 

[greenjellybean]

Just found you thread tonight and read it all, hello from a South Carolinan, I live a few miles from the Giant Peach (I will be nice and not let everyone reading know what its really called!) I hope the MAW trip is revealed to you soon and then the fun planning can start!

Hey! You're not too far at all! Thank you again for your kind words and encouragement! I can't wait to post a confirmation from MAW. : ) Hoping that will be soon!

 

[greenjellybean]

Hello!

Been a crazy couple of weeks finishing up school. Girls had a friend spend the night the first and second days of summer and then we spend the weekend getting them ready for Camp Kemo. Both girls went and Savannah was VERY nervous. I've been praying for both girls, that they will find they are able to relax and let go and feel safe and loved and accepted. Been praying ever since we signed them up!

Staff said they will start posting pictures online and I've checked probably 20 times since they left yesterday morning. No pictures yet. I'm sure they are coming. I'm just anxious to see them!!

Sophie had 10.25 hours to make up on the last day of school, which I consider to be miraculous, considering she had approximately 80 to make up. Her teacher was kind enough to come over and we managed to make up 4.25 of them already. Since Sophie is at camp this week and her teacher has plans the following week, we'll have to make up those last 6 hours the last week of June. But I'm confident well get them and she'll officially be a third grader. I'll have to make sure to really stay on her to practice math facts and reading over the summer and hopefully she won't feel 'behind'.

Health wise, she is doing good!! Sophie has chemo this week, so the staff will get her blood at camp and send it via runner back to the hospital for labs. If all is good, she'll have the choice of having her chemo at camp or she can ride back for her treatment to the hospital. Because her chemo treatment is a 'push' and not a bag, it's her choice. I think she's going to choose to stay so she misses out on less stuff at camp, which I'm fine with. The staff on hand are the same people she's been seeing since her chemo started.


Picture RIGHT before they boarded the bus. Savannah breaks my heart here. But she did manage to give me what looked like a genuine smile after loading and sitting down next to a girl her age. I'm praying she's still having fun!! Believe it or not, this is Sophie's serious, I love you face. This isn't I'm terrified face.

For anyone interested, below is a link to Camp Kemo's website. It's really cool!!
http://campsite.palmettohealth.org/index.cfm/camp-kemo-programs/camp-kemo1/about/

 

[greenjellybean]

This is what my girls looked like when DH and I came to pick them up yesterday morning! I think it's safe to say that Camp Kemo was a success!! Both girls had a wonderful time, were treated kindly by others, made friends with their cabin mates, had great counselors and can't wait to go back next year.


Sophie with all of the counselors from her cabin. She LOVED them and they had the kindest things to say about her. Sophie became fast friends with a girl in her cabin named Serena who had to leave camp early due to medical issues, so she was very upset by that, but otherwise, they said Sophie was the one doing the comforting. If she saw any child crying or upset she was quick to take it upon herself to rub their backs and offer kind words. So proud of my sweet girl!


Savannah made friends and conquered her fear of leaving us to stay overnight somewhere. It was a BIG deal. She hasn't spent the night anywhere (except once) in YEARS. She made lots of friends and had lots of positive wonderful things to say (that's a big deal... the child is a full blown pessimist all the way). Was overjoyed to see her smiling and having fun!

 

[Alicenwonderment]

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.