Monday, 24 December 2012

Thank you

Pulled up to the house, parked in the garage, and started crying. Sobbing really. I just couldn't walk into my empty house. I want Millie home. This isn't fair. She shouldn't have to do this again. Finally, I pulled myself together, got Austin out of the back (he was asleep) and started to get settled for the night. Jack started to bark so I slowly wandered to the front door. Not only had my driveway been shoveled, but sitting on my porch was so much love. Some people left notes and some did not, either way I want you all to know how much I needed the pick-me-up and the Christmas cheer. I am amazed at the love that we are given. Not only was my porch covered with gifts, but Millie and Austin have been showered with them the last couple days, not to mention Brady and I. So many of you have gone out of your way to help our whole family feel loved and support. I don't know if I would be as positive as I am if I didn't know how many people were backing us every moment of every day. We can do this. Millie can do this. I know it. I wish I could give each one of you a huge and tell you I love you and I am deeply grateful, but I can't, so please take this message and know that your kindness has been noticed, needed, and appreciated. Thank you and Merry Christmas. 

Tuesday, 13 November 2012

Bye Bye Broviac

I already wrote that Millie got her broviac out, but I didn't share what the day meant to her and to us. Millie has had some sort of tube sticking out of her body since she was 4 years old. First she had a Picc line, then they switched to a Port and before her transplant she had to get the Broviac. Her chest is covered in scars from everything being placed and then removed again. Every time I see them I am reminded of how incredible she is. It is a constant reminder of everything she has been through. Millie couldn't wait to get her line out! Her list of why: I can play with Jack (our dog) without worrying if he will bite my tubes, Austin and I can rough house without mom yelling, "STOP, he will pull your tubes", SWIMMING, taking a bath and shower for the first time in a really long time, running around more freely, and it also means I don't need my fluids, and I don't need as many medicines anymore, we don't have to flush my lines and I don't have to taste how nasty they are. It was the worst. 

I have to admit it was strange to see her tube free. She didn't seem like MY Millie. My Millie has chemo, fluids, and medicine running through her, she has tubes sticking out of her chest.  Those things have been a part of her for so long and now they're not. It was amazing to say goodbye, but strange all at the same time. 
It will be amazing to see Millie be Millie without all the extras. 

Meet Porter.
He is awesome and I admire him so much. I can't imagine the strength it must take for him to face losing his leg to cancer at 16 years old, but he smiles. Oh, how I love all these cancer kids.

We had to get a couple pictures before her surgery. Isn't it crazy that she had that sticking right out of her body.

Millie and her comforts.
Blankie and Lemur have been through everything with her. When we aren't allowed to stay they are. Is it weird to be grateful for items? Because I am. I love that lemur and blankie.

Even though she'd been at the hospital all day, been under anesthesia, and had surgery she still wanted to be outside playing.

I love my tube free girl!

Sunday, 11 November 2012

What we've been doing...

Pictures from September and October.

Saturday, 10 November 2012

Birthday, CureSearch, 100 Days!

So much has happened in the last month or so and I feel I will never catch up on the blog. Sometimes I wonder why I even write, but I know why. I forget everything, even the moments I think I will hold onto forever, or the funny things Austin and Millie say or do. I know that one day I will look back on this blog and be so grateful that I kept some sort of account from all of this. That being said...

The end of September was a huge month for us. We celebrated Millie's 7th birthday and I can honestly say that there were sometimes doubts that was won't reach it, but we did and Millie is doing incredibly well. I am grateful every single day for the prayers that have come her way and ours. I don't have the right words to say how amazing it is to be home with my family all together and not separated by the hospital anymore. All that is past us now, and I am typing today listening to Millie and Austin singing while eating their lunch, OK now they are fighting, but I'm still grateful. 

We also celebrated Amelia hitting her 100 day mark post transplant. This was a big deal for her. They tested her marrow and we found out she had 100% of her donor marrow and that she was also cancer free! She was able to start tapering off her meds, have her broviac removed, eat basically whatever she wants, and just feel a little more like herself in general. 

It was also the CureSearch walk. What an amazing experience that was. Not only for my family, but the whole childhood cancer community. Team Amelia really stepped up and we were able to raise an insane amount of money for research. Thank you to everyone that donated and to everyone that came out to walk with Millie and her cancer friends. I was in awe of how many people were there for us. I am speechless with the support and love that always comes our way. I am so blessed and honored to have so many wonderful people around us. 

Millie's birthday

Isn't' she lovely.

Make a wish sweet angel.

2nd Annual CureSearch Walk in SLC. 

Sadly I never got a group picture of our entire team and I also struggled at taking pictures at all. I did get a few, but if anyone has some good ones of Team Amelia please send them my way. 

Millie was lucky enough to have 2 other amazing fighters walking with us this year. Thank you Nico and Spencer for bring your families and joining our team in honor of Millie when we should have been walking for you. You both are my hero, and Millie is going to be a better person for knowing you. Cancer Sucks, but it has also brought many amazing people into our lives. 

Help Them Grow Old, WEAR GOLD!  

Nico and Millie

Since Millie hit her 100 day mark Nico gave her a pad of 100 dollar bills! No joke! A dollar a day.

We will forever be in debt to the nurses that care for Millie and we were so grateful to see some of them
there. We love you ladies! You make a difference in our lives.

We can always count on Swoop to come support Millie and this time he brought all his mascot friends with him. THANK YOU! All the kids were so happy to see you there.

OK, we seriously have the best nurses, including our home health nurse, Dylan. He is the best! So grateful to the support and care he gives Millie.

Spencer and fam, I am truly in awe of you. Spencer is honestly a miracle walking and there he was walking and supporting us.

More Team Amelia walkers: 
love you all!

And some cancer fighters we saw along the way. The one and only Cami and the rock star Rachel.


Thursday, 8 November 2012

P.S. I Adore You: Meet The Flamm Family

My amazing friend and fellow cancer mom helped launch an amazing website today with incredible deals on some seriously fabulous items, and the best part is they are supporting childhood cancer research. I was honored when Chelsea asked if Millie could be the first family that they featured and even more honored to share the love that so many have given our family.

Check out their incredible deals HERE and read about Miss Millie HERE.

Sunday, 30 September 2012

Day 95 or so

This was written last week around day 95, just never got around to posting it and I'm trying to catch up. It reads like Amelia hasn't had her birthday yet, but it was Friday. Today is also her day 100, and all her test results are back. 

At the end of this week I feel a little less pressure on my shoulders. I feel like I can breath. Millie is CANCER FREE and there is so much to celebrate. We are coming up on her 7th birthday, the CureSearch walk, and her 100 day post transplant. Life is not normal by any means, but for us it's starting to feel like it is.
All of Amelia's tests aren't back yet, we are still waiting on her chimerism in her marrow  (translation; how much of her marrow is from the new donor, hopefully 100%). The results of this test will decide how the next few months go. 

I have been asked a lot if Amelia is fine now  that she is cancer free and if she can go to school and stuff. The answer is No. The plan is still the same. What is keeping Amelia home and with that lovely mask on is her medication called Cyclosporin. Is it was keeps her body from fighting off her new marrow. It weakens her immune system. She will continue to take it for about 3 more months and then she needs a few months to recover from it. We are hoping things will be pretty "normal" for her near the end of March.
All these pictures are from September 26, the day Millie's marrow was tested. I felt so alone and scared. Thankfully we ran into a few of our cancer buddies, had one of our favorite nurses (really, they're all awesome), and got to see Dr. Verma. We miss her!  It really helped take the edge off to be surrounded by so many people that I know care about Millie. Thank you also for everyone who fasted along with us to prepare for this day. As you know our prayers were answered and Amelia was declared cancer free. 


Monday, 17 September 2012