Kimbell's Make a Wish Pre Trip Report

[paigestauffer]

I am beginning to think I'm a little late to the game!

My daughter is going on her wish trip May 16-22 and then we are extending so that we can do all the things we never do when we are in Orlando!

A little about us, we have one child Kimbell our 9 year old daughter. Kimbell has the rarest or rare diseases so rare it doesn't have a name after 9.5 years. Some of the brightest scientist in the world have been trying to help for many years. Unfortunately we continue to run into dead ends and based upon what we do know she has exhausted all treatment options We have faith in God, and the amazing doctors around the globe that something will change the outlook. For now we are trying to enjoy ever day to its fullest! In short she has bone marrow failure, no immune system and PCDH19 epilepsy.

So on to the positive note. Kimbell is in love with Stitch and all his cousins We even went to Tokyo Disney in November just so she could meet Angel. It was a dream come true for her. Even her service dog's name is Stitch!! Recently she watched all of the Harry Potter movies and is now a Harry Potter fanatic. The minions are a huge favorite as is Star Wars weekend. Her dad and her already have their Darth Vader costumes for the first day of her wish trip.

We love Disney and are truly looking for new ways to make this trip even more magical. If anyone has any ideas we would really appreciate it. As many times as we have been to Disney we have only done a few character meals and other table service meals. We were looking at perhaps going to one of the desert parties?

We have never been to Universal and she is soooooo excited about it. I'm praying that Diagon Alley will be open, well so is she The minion dance party sounds awesome too. We know zero about Universal so any recommendations would be wonderful!

Sorry so long.

 

[starearedkid]

I can't wait to hear all about this trip. It sounds like fun

 

[greenjellybean]

Found you! Sounds like Kimbell had been on quite a journey. How is she doing now?

How exciting that her make a wish trip is so close! She had to be so excited! Can't wait to hear more!

 

[greenjellybean]

Okay, just saw this in reference to the opening date for diagon ally:

'Update:*We're hearing our first credible rumor of a soft-opening date for Diagon Alley: May 14. No guarantees, of course, with soft openings.'

If so, y'all might be in luck!

 

[paigestauffer]

Okay, just saw this in reference to the opening date for diagon ally:

'Update:*We're hearing our first credible rumor of a soft-opening date for Diagon Alley: May 14. No guarantees, of course, with soft openings.'

If so, y'all might be in luck!

What wonderful news!! Thank you so much! I can't wait to tell her. We finished up with the BMT doctors Friday late afternoon came back to TX and have been inpatient since Monday morning.

Somehow in all the craziness I managed to get a ADR for Star Wars character meal dinner

 

[greenjellybean]

Star wars character meal? Very cool!

What part off the great state of TX are you from? I've been in SC since I was eight, but I was born in Arlington.

Most of my mother's family is still there. Some in Houston. I had a dear uncle just pass away suddenly that lived in Dallas. Merkle (near Abilene) holds more family and my mother and more live an hour west of Houston.

 

[paigestauffer]

So if any of you are prayer warriors We could really use some prayers. I am excited that after giving Kimbell no chance, the doctors have decided that she needs to get a bone marrow transplant and if successful she could live a pretty normal life!! The wish is perfect timing because we will return home and then literally have to move to the Ronald McDonald house for a minimum of 4 months in MN (we live in TX!).

If you could please pray that she feels God's presence with her every step of the way, for the donor who is so graciously giving up part of themselves for our baby, and that she survive as the odds are not good. I know this sounds vain but she's 9, will turn 10 in August, that age when girls aren't so nice and girls also are so worried about their appearance and I pray that she comes to terms with the fact that she will be bald for some time due to the chemo. Kimbell was born with a full head of hair! She has never been bald and always had long hair.

Thank you from the bottom of my heart for any and all prayers you might have time for.

 

[Kblue]

Praying!

 

[greenjellybean]

Praying praying praying!!

I don't know if you know what chemo agent her oncologist wants to use, but Sophie is on vinblastine and while her hair had thinned considerably, she hasn't lost it. In fact, I don't think others notice that is thinned at all. I can see it where her hair naturally parts and especially as I brush her hair.

She has gained considerable weight from the steroids despite my best efforts and that bothers her tremendously. But her friends at school (many who, before her diagnosis, were unkind at best and bullying at worst) have been very thoughtful and kind.

And I realize how it feels to be concerned about her appearance while fighting for her life and it isn't silly. Your concern stems from how she might feel about herself and how others may treat her. Nothing small or silly about that.

 

[greenjellybean]

Praying praying praying!!

I don't know if you know what chemo agent her oncologist wants to use, but Sophie is on vinblastine and while her hair had thinned considerably, she hasn't lost it. In fact, I don't think others notice that is thinned at all. I can see it where her hair naturally parts and especially as I brush her hair.

She has gained considerable weight from the steroids despite my best efforts and that bothers her tremendously. But her friends at school (many who, before her diagnosis, were unkind at best and bullying at worst) have been very thoughtful and kind.

And I realize how it feels to be concerned about her appearance while fighting for her life and it isn't silly. Your concern stems from how she might feel about herself and how others may treat her. Nothing small or silly about that.

And how in the world do I keep managing to double post? Seems to be an issue when I use my phone.

 

[paigestauffer]

Praying praying praying!!

I don't know if you know what chemo agent her oncologist wants to use, but Sophie is on vinblastine and while her hair had thinned considerably, she hasn't lost it. In fact, I don't think others notice that is thinned at all. I can see it where her hair naturally parts and especially as I brush her hair.

She has gained considerable weight from the steroids despite my best efforts and that bothers her tremendously. But her friends at school (many who, before her diagnosis, were unkind at best and bullying at worst) have been very thoughtful and kind.

And I realize how it feels to be concerned about her appearance while fighting for her life and it isn't silly. Your concern stems from how she might feel about herself and how others may treat her. Nothing small or silly about that.

And how in the world do I keep managing to double post? Seems to be an issue when I use my phone.

Thanks sweetheart I honestly didn't know that about the various chemos. They just told us she would lose all of her hair. They are using campath, fludarabine, and busulfan. It's amazing how God makes things happen at the right time. I cannot wait for her wish, I am so excited!! Now I just need to find a seamstress to make all the outfits K has seen on etsy! Her and google are best friends!! If anyone knows of a good seamstress in the Fort Worth, TX area please send me their information!

 

[paigestauffer]

Praying!

Thank you Kblue!!!

 

[greenjellybean]

Just checking in. Hope things are going well for Kimbell in regards to her health! Her MAW trip approaches and I'm so excited for you all!

 

[sambycat]

I knew I'd find you here! We spoke to you in line today for May the 4th! Looking forward to seeing more here about your trip! Wishing you the best!

Lisa, Trace & Miles