Happy Birthday Millie!

Millie,

Today is your 8th birthday.  We missed you more than ever today, but we made it through the day by spending time with our family, attending Jager's baptism, taking Austin to see Cloudy With a Chance of Meatballs 2 (which you would have really enjoyed - your laugh would have filled the theater!), being showered with gestures of love by friends, family, and neighbors, and feeling you close by us during this special day.

They say that time heals all wounds.  I hope this is true.  We made it through the first month or two smoother than I would have expected.  We felt comforted during your transition and that comfort made us feel like everything would be OK.  As time moves on and your bedroom sits empty we miss you more with each passing day.

Your mom and I constantly say to each other, "Millie would have loved this."  It is a conflicting feeling to have fun with Austin and enjoy the moment, while at the same time wishing that you were sharing it with us.  The interesting thing that we are realizing is that you loved just about everything.  You loved life, and your time battling cancer made you appreciate anything good that happened and you enjoyed the small things more than anyone I have ever met.  I know you would have loved to be there for all the things we did today, but I know that your mission on this earth has been completed and I know you and know that you are enjoying whatever you are doing.  I only wish that I could see the wonderful things that you are up to.

I know you are proud of your brother.  He has started school and he loves it.  Mom has convinced him that he should be a gentleman and he is always very proud to hold doors open for people.  He misses you so much.  He spends an hour or so every day watching the video that Pat made for the funeral.  It doesn't make him sad.  He smiles and laughs as he sees all your pictures, and gets a little embarrassed by the pictures of you dressing him up like a fairy or princess when he was younger.

I wish I had more time with you, but I am so grateful for the time I had.  I'm grateful that you lived a happy life for three and a half years after your original diagnosis.  We made so many amazing memories during that time, and it was thanks to an amazing medical team at Primary Children's Medical Center, as well as the fantastic team that took care of you at the Children's Hospital of Colorado, as well as the encouragement and advice we received from the team at MD Anderson.

We wanted your birthday to be a celebration of your legacy, not a day of mourning, and it was.  You always chose to be happy, and we do our best to make that same decision every day.

I love you and miss you dearly,

Dad

Millie's BFF, Princess Cami

Millie's Princess Foundation and I would like to introduce you to

 Princess Cami 

aka Millie's Rock, her BFF, and her Cancer Buddy

I don’t know where to start…
I have so much love for Princess Cami  and I know you will too.  Cami made my Millie’s life as normal as it could be. She helped Millie feel like she wasn’t alone. When Cami came to visit, the IV poles, tubes sticking out of her body, and the bald head all disappeared. When Cami came there were only smiles and giggles, nothing else mattered. Cami had the same cancer Millie had so she had somewhat of idea of what Millie was going through.  Sadly right after we buried our beautiful, baby girl, Cami’s cancer returned. Now she knows exactly what Millie was going through. This incredible, little lady knew cancer was nasty before, but now she knows the shocking truth as she just witnessed it take her best friend. Sweet Cami even stood up at 7 years old and spoke at Millie’s funeral.  We were heartbroken to hear the news and knew that we wanted to step up and help this beautiful family. We are so grateful for all you've done for our family, and I'm not in a position to ask for anything, but we'd appreciate any support you can give Cami and her amazing family.

Here's the link for the fundraiser that Millie's Princess Foundation is holding for Cami. If nothing else, go watch the short video of these two little fighters journey together. 

We love you Princess Cami.

Don't Miss It.....

Cameron Rafati performing TONIGHT, the details are in the short YouTube clip.

Millie's Foundation Update!

Last Day for Millie's Outfit

Today is the last day to purchase Millie's One and Only clothing line. We are extremely grateful to Persnickety Clothing for helping Millie's deepest desires to come true. We are honored that they are donating ALL proceeds to Millie's Princess Foundation. We feel so blessed and loved. Our family can't wait to see Millie's creations running around town. Thank you for everything! We are so blessed to have such an incredible support system in every single one of you.

If you are interested in purchasing Millie's outfit you can go HERE

Dreams Continue to Come True for Millie

Another dream for Millie came true today. Thank you Persnickety for making her a fashion designer!!!

Written By Persnickety Clothing Company

Amelia (Millie) Flamm came into our lives as a result of a recent company service project. We haven’t been the same since.

Once a quarter we do a service project to increase the happiness of those within our sphere of influence. After learning about Millie and her desire to be a fashion designer, we decided we’d like to help make that dream come true.

Our design team took a day and met with Millie to see which of her drawings would work best. We discovered Millie was a very talented artist – and a very talented “whistler” as you’ll see from the video.

After deciding on the perfect art piece, we learned from Millie’s parents that her time left was short. Indeed very short.

We rushed the design and sample process so we could get a finished product in Millie’s hands before she passed.

The day we brought the finished outfit to Millie’s house she was so weak she would only wake for minutes at a time and

her parents didn't expect her to make it through the day.

We gave it to her Dad, left, and prayed for a miracle that she would wake up to see what she had created – to see her dream come true.

Finally, she woke, got up and hugged her mom, then laid down and slipped away free from the pain and restraints of this life.

We learned that throughout the struggle and fight against leukemia, Millie never complained. She spent her time and energy worrying about and helping others.

Her Motto was “Stay Strong.” She has left a legacy of faith, strength and inspiration and will always be a reminder to us to Do and Be Better.

Millie’s outfit will be for pre-order on our site www.persnicketyclothing.com and at participating online retailers for the next week.

All proceeds will be given to Millie’s Princess Foundation.

But the Millie Outfit Today and Support The Fight Against Leukemia.

Visit www.persnicketyclothing.com and participating online retailers

For more of the story visit our blog: www.persnicketyclothing.com/blog

To Read Her Story Go HERE

One Month

It has been a while.  Two and a half months ago I wrote most of a very long blog post to catch us up.  I'll have to finish it and get it up soon, but I didn't want to let today pass without writing something.  This is probably more for my sake than anything, but feel like sharing tonight.

Dear Millie,

A month ago you were freed from your pain.  I miss you more each day but I am happy for you.

In December we learned that it was not likely you would survive.  In February we were told you were out of options.  We all refused to quit and fought on.  When bad news came it was very hard on your mom and me.  I felt like I had failed you.  I felt that if I was unable to protect you from this that I wasn't good for anything.  I was heartbroken.  We never gave up hope and knew you were capable of miracles, and you showed us many.

I know you did everything you could, and I know your mom and I did everything we could.

During those hard months I mourned your loss.  On May 17th, two months and one day from today - our 10 year anniversary, we learned that there were no more options, and this time there was absolutely nothing we could do about it.  What a bittersweet thing it was to hold you and love you, knowing that your time was limited, but protecting you from the pain of worrying about it.  I am so grateful I got those extra months with you.

Those were not easy months for any of us, but they were especially tough for you.  I know that those extra months were for your mom and me.  I know that we needed the time to accept that this was what was best for you.  You didn't complain much, but I can imagine how hard those months were for you.

You were too little to truly understand how brave you were or how many people you inspired.  I wish I could have explained it to you, and I certainly tried.

I will never forget one of the last things you said the night before you left this life.  I left the room in tears, horrified that I had to watch you suffer and that I had to let you go.  You turned to your mom and said "tell dad to think of his brave Millie."

I miss you terribly, but I have not mourned your loss this past month.  You suffered enough.  I love you too much to wish you were still here suffering.  I need you here with me, but I know that God did what was best for you.  All I ever wanted was what was best for you, and if living the rest of this life without you is what is best for you, then I will not complain.  I will be brave for you.

We have tried to serve others in your name.  This year's Millie's Princess Run was amazing.  I can't believe how many people helped, and know you were proud.  We are not done.  We have big plans for how to help others.  I feel you close to me when I help others - frankly my desire to serve may be a bit selfish at this point.

I must have told you this hundreds of times but I will say it again.  You are my hero.  I am so proud to be your dad, and I hope I can be a better person so that when we meet again you will be proud of me too.

Love,

Dad

Bringing in 2013 Bald and Beautiful

Millie, Brady, and Austin just shaved their heads together over facetime. So grateful for technology that allows my family to be together when we have to be apart.

BRING IT 2013! WE ARE READY! 

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. 

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!

What we've been doing...

Pictures from September and October.

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.

GO TEAM AMELIA! 

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.

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. 

Exhale.