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

[greenjellybean]

Chemo day today. At the clinic now waiting on Sophie's lab work to come back.

 

[greenjellybean]

Her blood work came back looking great so another chemo treatment done. Lots to be thankful for! I noticed today that Elsa and Anna will have a coronation ceremony? Wonder if Sophie will be interested in that?

 

[paigestauffer]

So happy to hear her numbers looked good. Wish I knew why our kids stop liking their pictures taken. I've noticed when K has a really good day she is ok with pics. I hope she feels better. Can't wait to hear more about her!

 

[greenjellybean]

Took Sophie to a local St Baldricks event today. Her nurse from the clinic was one of the 'shavees' and we wanted to go and show our support. Robin invited Sophie to join her on stage and even shave her head, but nerves got the better off her and Sophie declined.

 

[greenjellybean]

Rough week this week for Sophie but she realized today that our MAW volunteers visit Saturday and she totally perked right up! Already been a blessing to our family!

 

[starearedkid]

I am sorry to hear that it was a rough week for Sophie.

Keep us updated about what happens on Saturday

 

[jpmom97]

Following along! Thanks for sharing Sophie's story, I will keep her in my prayers.

 

[greenjellybean]

Sophie's MAW volunteers, Melissa and Lois, left a short while ago. They were wonderful! Sophie seemed very comfortable with them and shared her thoughts and answered their questions easily.

Her official wish: To go to WDW and stay at GKTW!

Her back up wish? To be able to make videos and upload them to YouTube. She calls it being a YouTuber.

Don't suppose we'll know if her wish has been granted for a while, but they seemed confident that it most likely will be. Trying to NOT make a big deal out of it, JUST IN CASE they are unable to grant it.

Melissa, Sophie and Lois


They actually got a REAL smile out of her!

 

[greenjellybean]

JPMom97, thanks for the prayers! We are big believers in the power of prayer and appreciate all we can get!

 

[Emilyswish]

Yay, so glad you had your meeting with the Wish granters! (I should've taken a picture with ours!!)

I'll be following along!
Aimee

 

[greenjellybean]

Thanks! I'm glad you found me! I'm hoping to have more updates soon. I found your trip report and have subscribed and can't wait to read it!

I realize now that I forgot to mention to our MAW volunteers that we MAY be interested in extending our vacation past the MAW trip. Not written in stone and will naturally have to consider what finances are available, but I did mean to mention it. :\

 

[paigestauffer]

how exciting! cant wait to hear more!

 

[greenjellybean]

Strange feeling today. Sophie is going to school part time while she completes her chemo. A massive blessing that she is healthy enough to do so. She had a big test this morning and it felt odd to me to be praying with her for calm spirits and to do well while at the same time we are working to save her life. I guess I'm still getting used to our new normal. Hope all is well with everyone else!

 

[paigestauffer]

Strange feeling today. Sophie is going to school part time while she completes her chemo. A massive blessing that she is healthy enough to do so. She had a big test this morning and it felt odd to me to be praying with her for calm spirits and to do well while at the same time we are working to save her life. I guess I'm still getting used to our new normal. Hope all is well with everyone else!

I completely know how you feel, it is so hard to balance life when life is literally threatened. I am having the same battle Any new developments with the wish?

 

[greenjellybean]

No news on her wish, but I'm told it takes time and we may not hear from them for some time. They also reassured us that we can email or call anytime with any questions, so I'm glad for that. Reminds me that I need to ask if we are permitted to extend the vacation but a few days at our expense.

 

[greenjellybean]

Sophie and her 'date' went to the 'Give Cancer the Boot' Dance at her school tonight. She was super excited. Was running a slightly elevated temperature before hand, but she acted fine and it hadn't risen, so we sent her on. She only stayed for an hour before she was shot and ready to go home, but said she had lots of fun!

Sophie and Daddy... I mean her 'date'


Feeling pretty


Her flower corsage

 

[Dreamer & Wisher]

I am Reading along, your daughters are so sweet. Hoping you hear from you wish grantor soon.

 

[greenjellybean]

Thanks Dreamer & Wishes!

 

[paigestauffer]

Sophie and her date are too cute

 

[greenjellybean]

Been a busy week for us, but a good one. Completed chemo treatment number 10. Feeling very grateful tonight that it's been so far (at least since getting the correct diagnosis) relatively easy going with little difficulty. I sincerely hope that doesn't sound like bragging. Just recognizing it's not the same experience for so many families and it's something to be grateful for.

I did ask her oncologist today if we need to extend her chemo from 6 months to 12 months. There are some new studies that suggest children with LCH lesions in the facial bones who are at an increased risk for developing diabetes insipidus and CNS involvement dramatically reduce those risks after 12 months instead of the standard 6. Once it gets into the CNS, it starts to resemble something akin to MS and is only managable at best and degenerative at worst.

I REALLY have no desire to extend her chemo. She takes a fairly mild chemo agent as far as chemotherapy goes and we've really been blessed, but to put it not so delicately, it kind of sucks. I don't want her to go through 6 extra months. But I really don't want lesions to develop on her precious brain.

Anyway, just getting out. I promise not to be such a downer with my next update.