Sunday, 19 August 2012

Day 63

Millie is doing wonderfully. She is feeling so much better (she's dancing around the family room right now). She has been making it whole days without stomach pain and she didn't need any transfusions last week. They went down on her IV fluid intake and there is talk of taking her completely off IV if she ups her drinking. If that happens there is no more need for her broviac and it can come out!!!!!

I honestly haven't seen Millie without a tube sticking out of her chest since she was 4, she is almost 7. She will be covered in scars, but tube free and it's going to be a beautiful sight. Now all I have to do is get her just as excited with thoughts of swimming and taking a bath. Those are two good motivators!

Her hair is coming in, so are her eyebrows, and lashes. Her lashes are so dark I have had few people ask me if she's wearing eyeliner. We are all just so use to seeing her hairless I think it will take some getting use to. 

Millie is suppose to get 4 doses of a chemotherapy called, Methotrexate, in her spinal fluid via a spinal tap, but her platelets have not been up high enough for the doctors to feel comfortable doing it. She hasn't had to receive a transfusion, but her platlets are still low at 20. They'd like them to be above 50 to move forward, so I don't know if they are even going to give her the chemo anymore. It's the protocol for bone marrow transplants and helps to prevent CNS relapse. I hate not doing it, but at the same time I am grateful she doesn't have to have any more chemo aka poison running through her spinal fluid. I will know more on Monday when we go back in for her check-up. In the mean time here is a little of what we have been doing the last week or so...

Playing with Jack Attack.

Austin being Austin.

So you know that Cupcake App? Well my kids love it and so their freaking amazing dad brought it to life for them. Brady made 4-dozen cupcakes with Millie and then they mixed different colors of frosting. He also bought a bunch of random candy for them to stick on top. 

Last weekend we hit up the drive-in and saw Ice Age. Austin and Millie both loved the drive-in. I was a little nervous about taking Millie as always, but we took all our own snacks and drinks. We all used the restroom before leaving the house to avoid that nightmare, yuck!  Millie never touch anything but the truck since Brady carried her from her booster seat to the back where we had filled the cab with pillows and blankets. It was awesome. Thanks to Uncle Bry for letting us borrow his truck. Austin was pretty upset we had to give the truck back, he thought that we would keep going every night. 

We also went hiking. It was short and sweet. Brady had to carry Millie up the steep parts, but she was fantastic. Austin ran most the way and jumped off everything while proclaiming he was going to be in the Olympics. My kids are awesome.

Millie has also gotten to play at her Nana's house for the first time, which she was thrilled about and play at the neighbors in their backyard. She is always making some sort of craft to keep her busy and Brady's thinks I should start a blog reviewing crafts for kids since Millie has done so many.  She also started piano back up and is doing great. We decided to have her review the last book she did instead of moving on and she is flying through it. The girl is a natural, and it doesn't hurt that she has the best teacher. What I think is the best news is she has started eating a lot more. Hopefully there will be no more weight loss. Wahoo!

It's been a good week.


Missy said...

Hooray! What a normal, happy post. So glad to see you guys out enjoying the summer.

Wendy said...

Oh Amanda! What an awesome post. Millie looks so happy, as does the rest of your family. My heart is smiling this Sunday afternoon and I will be sure to give thanks where they are due for Millie's great progress. Stay strong Millie dear. You are a ROCK STAR!

Chelsie said...

I've been thinking a lot about your family and am so happy to read and see how great things are going! I've felt a uniquely peaceful joy reading Millie's progress. You are all so beautiful- inside and out!

We've got clinic Monday so perhaps we'll see you guys!

Danalisa said...

this blog made me so happy! yeah yeah yeah!

Heidi said...

Yay! Yay! Yay! She looks AWESOME! I am so glad she is doing so well. I am loving her dark hair. (Crazy how it changes each time huh? Jake's is coming in a lot darker as well.) She is darling and so are you. Hopefully we will see you guys soon!

(p.s. I told Cole that Millie thinks he is cute. He has been asking almost every day to see pictures on your blog and how she is doing. It makes me laugh. Maybe one day we can get them together to play!)

Carly said...

Sounds and looks like you guys are having fun :) I just received a letter from one of my best girl friends on her mission and she said that she and her companion are praying for Millie and you guys every day.

Anonymous said...

THIS POST MAKES ME HAPPY !!! Yay for all of you! - Miss Patti

The Buckley's said...

She looks amazing!!!! It sounds like she is having a great time and seriously I think Brady is the most amazing dad. Your family is too cute.

Kristina said...

Your kids are so much fun! And I cannot believe how tall Millie is in that picture standing next to you! WOW!!