FLAMM FAM

Christmas TIme

2011-12-31T11:39:00.001-08:00

Our Little Star

2011-12-30T16:48:00.000-08:00

Millie was in her 1st play this year. Her school did How The Grinch Stole Christmas. She loved doing it and was very cute. I was so proud of her for knowing all her lines, songs, and dances.

The school hires out to a Non Profit Company to run the plays and they adapt them so every child has lines and a solo (if they want). Millie was an Apple Who.

WE LOVE YOU LITTLE GIRL AND OUR VERY PROUD OF ALL YOUR HARD WORK.

Not the best picture, but I love her pose.

Thanks Grandpa Jeff and Nana for coming to see Miss Millie make her debut.

Grandma Jager and Grandpa Jager too!

Millie with her teacher Anna. She was so good to Millie. THANK YOU!

Clinic December 2011

2011-12-30T16:38:00.000-08:00

Millie had clinic a few weeks ago, but I am just getting to blog about it. Everything went as normal, but her ANC was still only 700 on a 50% dose so they decided not to up her dose and do a blood check in 2 weeks. Her docs would really like her to get a little more chemo in her system before she's done in February, but her little body is saying NO.

Aunt Codie got to come!

I still need to take Millie's hair picture for her December update, YICKS I'm behind, I will have to add those in a day or so when I get it done.

Clinic Stats

Height: 11.1 cm

Weight: 20.1 kg

ANC: 700

Two Weeks later our home health nurse, Dylan came out to do Millie's blood work. Her ANC was now 800, but they still weren't comfortable upping her dose so we will wait until her January clinic appointment before making any changes. We did find out that her red blood cells were low and with how pale she has been they decided to do a blood transfusion. The girl is trying to keep things interesting for her last couple months of treatment and I wished she'd knock it off already :).

From the bag...

Through the filter...

To Miss Millie.

Thank you to the random stranger that donated so Millie could have a good Christmas, and Thank you to Andy and Nancy for babysitting Austin last minute. I don't know what I would do without the help of my family.

1st Hair Cut

2011-12-05T11:50:00.000-08:00

THANK YOU MOLLY!

What happens when we are stuck at home with low counts

2011-11-27T20:59:00.000-08:00

SUPER COOL people come to visit, including SWOOP from the Utah Utes! He chased the kids all around and even gave Millie his squirt gun. I wasn't thrilled, but she was! It's her new favorite toy. THANK YOU SWOOP!!!

We wash Millie's hair in the sink when her port is accessed. It can't get wet.

We sing Thanksgiving songs.

We make homemade masks to go get a redbox.

Even Austin gets one.

We give LOTS of doses of antibiotic at all hours of the night.

We color, mostly on paper, but not always.

Our home health nurse, Dylan comes over a lot to test blood levels. He has become a permanent fixture in our home.

We make potions out of colorful rocks.

Even I got a turn to access Millie's port. I was terrified, but it went great. I was surprised that I had to push with so much force to get it in. Kind of freaked me out.

We play dress up.

We build things and make LOTS of crafts. Thanks Grandpa Jager for bringing the nails. She made a bird house and a couple stools.

Millie teaches Austin the piano.

Last but not least Brady and I FINALLY painted our front entryway and upstairs. We love it!

We have had a crazy couple of weeks, but we are grateful for all the love and support we have been shown. Millie being hospitalized took us completely by surprise and was a huge wake up call. Sometimes we forget how fragile Millie's immune system is since she is such a tough cookie. Millie's had a very hard time rebounding this time when her counts plummeted, but we have finally reached an ANC of 800 and she will restart her chemo tonight.

Blood Counts over the past week and a half:

11/10/11 ANC 300- normal clinic, cancel chemo and wait for counts to rise.

11/17/11 ANC 100- fever of 104, start antibiotic and fluids every 4 hours, hospitalized.

11/18/11 ANC 100- slight fever, continue antibiotic, stay at hospital again.

11/19/11 ANC 100- no fever, change antibiotic to every 8 hours, get to go home!

11/21/11 ANC 100, continue antibiotic every 4 hours

11/23//11 ANC 200, stop antibiotic, watch for fevers

11/28/11- ANC 800!!!! Amelia is good to go. Restart all chemo at a 50% dose, and retest in a week.

I am so proud of my Millie Bug. It has been very hard to be trapped in the house for so long, but she handled it very well most of the time.

Thank you again to everyone who called, brought meals, and came to visit. We love you!

Clinic November 2011

2011-11-20T17:02:00.000-08:00

We had a visitor with us today at clinic, Aunt Kim! I asked Millie who she wanted to invite this time and she was certain she wanted her Aunt Kimmi to come with her. Amelia started a new round of Maintenance so she had her usually Vincristine, but she also had a Lumbar Puncture where they inject a chemo called Methotrexate into her spinal fluid. She did very well and thankfully it went pretty fast for a chemo appointment. I think we were out of there within four hours. She also started a new round of steroids, YUCK!

Clinic Stats:

ANC: 300

Millie's ANC is under her target range so

she has temporarily been taken off all oral chemo until her blood counts come back up.

Height: 112 cm

Weight: 20 kg

And for her hair...

* A lot has been going on with Miss Millie but I wasn't up for a long post, so I decided to just blog clinic for now. I will post again later this week about being inpatient and what's going on with her blood counts.

Pippi Longstocking is coming into your town....

2011-10-31T20:31:00.000-07:00

Miss Millie has been planning on being Pippi Longstocking since last year and Austin was suppose to be Mr. Nilson, but he hated his costume. We resorted to whatever he would put on.

Happy Halloween!

Fall Fun

2011-10-25T11:38:00.000-07:00

October Clinic Update 2011

2011-10-23T15:36:00.000-07:00

Millie did fabulous at clinic and it went fast! We were out of there in 1.5 hours, that never happens. Everything went well and other then the normal side effects from her chemo like, stomach pain, and an aching body Millie is looking fabulous. I am sure proud of my little Super Hero.

Clinic Stats

Height: 111 cm

Weight: 19.1 kg

ANC: 1.4

I had to include this picture. This is Austin's "smile". It's a little frightening.

Boston

2011-10-19T13:57:00.000-07:00

Last December for my birthday Cousin Sherry gave me a trip to Boston and we finally got to go. I love the Fall, it's my favorite time of year. I am so glad we waited to go until October. Sherry's sister, Krissy, attends Harvard University and also works there. She has been in the area for around 9 years now and she was the perfect hostess. Krissy knows everything there is to know about Boston.

The first night we arrived pretty late so we headed to dinner at a place called Fire and Ice. The service wasn't that great, but once we figured out what we were doing we all loved it. I would definitely recommend it. We also stopped by a cupcake shop called Sweet. BEST cupcakes ever. Their frosting is like nothing else I have ever had. Truly perfect.

Saturday morning we woke up and hit up a place called The Friendly Toast. Oh my goodness it was amazing. The restaurant itself is pretty quirky and the menu was extremely unique. I ordered Gingerbread Pancakes with Pomegranate Molasses. I'm actually not a huge ginger fun, but I couldn't pass these babies up. You can check out their menu here.

Me and Cousin Sherry

Me and Krissy

After filling our bellies we went home cleaned ourselves up a bit and headed out to Bolton Spring Farm for some apple picking. So fun! Then we walked across the street to get some fresh Apple Crumble, Cold Cider, and rummage through the local market. If you can't tell already a lot of our trip was based around food so next we drove to Kimball Farms and tried out their famous ice cream. There was NO room in my belly, but I still managed to force down the best Burnt Almond Fudge I've ever had.

At this point we waddled our behinds to the car and drove to Waldon Pond where we spent the afternoon wading in the cool water. I loved seeing all the locals swimming. Next time I will be packing my swim suit. I know we are dressed for cooler weather in our scarves and boots, but it was in the 80's. Who Knew...

Cousin Sherry, Me, Krissy

That night we went to dinner at a place called, Punjabi Dhaba. I LOVE me some good Indian food and this place hit the spot. Here in good ol' Utah when you go get Indian it's usually at a really nice restaurant with white table clothes, not very authentic. This place on the other hand had Bollywood music blasting, it was full of locals, and the food was served on a metal tray. For dessert we walked down the street a bit and got more ice cream at Christiana's Homemade Ice Cream.

I am one happy and FULL girl :)

Sunday we woke up early and attended our church meeting, took a peek at Jennifer Gardner (my girl crush), and Ben Affleck's home, then we headed to Topsfield for the longest running fair in the county. The fair is my favorite. I love the people, rides, food, the giant veggies, and all the randomness that comes along with it.

We made a last minute decision to stop through Salem on our way back and I am so glad we did. There is a lot of history in Massachusetts, but Salem is different. It's difficult for my mind to wrap around what really happened there with the witch trials, but it was very interesting to wander through the town. When we pulled in there were booths set up everywhere, and people decked out in their witch attire. It was so fun, but strange all at the same time. Salem was one of my favorite things we saw, but I also felt a tiny guilty for enjoying it's mystery.

Salem, Massachusetts

For dinner we got take out pizza at Otto Pizza in Harvard Square and since we were so close we couldn't resist trying a new flavor of cupcake from Sweet, again.

Sunday = Duck Tour of the city, eating at Faneuil Hall Marketplace, resting at the Harbor, shopping at H&M, and then the best night of eats yet! Little Italy is a must!

Mike's Pastry had the BEST cannoli I've had in my life. I even packed one home for my dadio.

If you are ever in Boston you HAVE to eat at Giacomo's. We were all dying over their delicious food. My favorite was the Pumpkin Tortellinis and Garlic Broccoli. Get there early or you'll wait all night for a table (totally worth it even if you do have to wait)!

My mouth has started watering just thinking about their yummy food.

***Thank you Cousin Sherry for taking me and thank you Krissy for giving us a place to stay and touring us around all weekend. You both are amazing. Can't wait till next time!

Meeting the Utah Utes

2011-10-01T20:25:00.000-07:00

We had the most amazing night! Jamie Whittingham (if you're a UTE fan you know that Jamie is Kyle Whittingham's wife (aka the Head Coach), Jamie set up a meeting with the cheerleaders, and Swoop before the game tonight. It was awesome! Millie was a little shy at first but once Swoop handed over his squirt gun she turned into her regular, mischievous, goofy, self.

Millie meeting Jamie (THANK YOU JAMIE and THANK YOU MELISSA)

The cheerleaders were so sweet to her, and even gave her a signed calendar. Millie was a bit overwhelmed and she just stared at them in awe, but after they left all she could talk about was how much fun it was to meet them, and how nice it was of that they let her hold their pom poms. Although she wasn't sure how to act around Swoop and the cheerleaders at first, as her parents, Brady and I could see how much she was loving it, and how special they made her feel. As Brady carried her to our setas, she said, "boy I'm a lucky girl"!

Millie posing with some of the cheerleaders.

Millie, the squirt gun, and her new pal, Swoop!

A family friend of the Flamm family, Travis, who put us in touch with Jamie in the first place, also gave us his tickets for the night! THANK YOU FOR EVERYTHING, TRAVIS! It was a night that we won't forget. I tear up just thinking about how much love went into making tonight special for Millie, and for us.

Millie dancing the night away.

Swoop even brought Millie a SIGNED shirt. It's huge and it made her love it all the more. She wore it around like a dress at the game and insisted on wearing it to bed. "It's a nightgown mom".

I love these two.

One of my favorite parts of the night was being down right on the field when the players and Coach Whittingham came out. It was so fun to watch the fans going crazy.

THANK YOU THANK YOU THANK YOU

to everyone who took part in making this night possible for Millie, Brady, and I.

HAPPY 6th BIRTHDAY MILLIE!

2011-09-27T22:39:00.000-07:00

I can not believe another year has pasted and that my baby girl is 6! I am so proud of the person Amelia is. She is the most amazing, little thing. Amelia is being spotlighted at school this week because of her great behavior and I thought it would be fun to post her answers to her questionnaire here:

1. My favorite food... Macaroni

2. My favorite book... The Fire Cat

3. Something special about me... I'm Silly!

4. My favorite thing to do... Go Swimming

5. My favorite game... Connect 4

6. My favorite toy... Barbies

I am so glad I have been taking pictures of Millie every time she has a clinic appointment. I can not believe how much she has changed over this past year.

My little 5 year old is now 6!

Sadly, I don't have a picture for July. I forgot to take one :(

Fun In The Sun

2011-09-21T21:57:00.000-07:00

As summer has officially come to an end and the leaves are changing I wanted to post a couple pictures from the summer. I didn't do a lot of blogging because we were too busy playing hard or working hard, but it has been fabulous. Fall is my favorite season but I have to admit that I am sad to say goodbye to the warm nights.

(click to enlarge)

Here's just a couple highlights of the summer...

Watching Austin help Grandpa Jager build our fence was my favorite part of the whole summer

Longboarding down the driveway over and over again

Millie learned to ride her bike

Dance Performances

A lot of dress up

Fashion shows

Millie's giggle

Snuggling

Painting

Frogurt

Hiking

Movies

Austin

Love

Fun

It was a perfect.

Love Them

2011-09-19T09:37:00.000-07:00

Millie September 2011 Update

2011-09-18T19:36:00.000-07:00

What can I say about Amelia and her clinic... Everything went the same as usual. Check-in, get a hospital band, wait, crafts, height, weight, blood pressure, get assigned a room, wait, wait, wait, see a nurse, wait, get prepped for PORT access, jab needle in chest, draw blood, wait, wait, wait, wait, talk to doctor, back to infusion area, wait, wait, wait, flu shot, wait, wait, wait, finally chemotherapy push, de-access, clean up, schedule for blood labs in 2 weeks, schedule for clinic in 4, go home.

I am so sick of this routine that has become normal. I'm starting to feel like it's all too easy. I guess that's a good thing, but at the same time I know that none of this is easy. Even as I say it I find it a little insulting to Amelia and somewhat disrespectful to take away what she is going through. They upped her steroid dose because she had gained a little weight and I wanted to scream NOOOOOOOOOOOOOOOO from the top of my lungs. As her mother I know that she feels horrible on steroids. She is so depressed. Nothing makes her happy for longer then a few minutes. Today Brady heard her say, "This is the worst day of my life," so for me to feel like this is routine isn't fair to her. None of this should seem "normal," none of it should be blown over, or a second thought. I don't know if that even makes sense, but it makes sense to me.

Sadly I was reminded this week of how cancer once again can effect anyone at anytime as our neighbor and friend was diagnosed with rhabdomyosarcoma. Tyler is 16 years old and faces a year of intense chemotherapy mixed in with radiation, and possible surgery. When I hear news like this it makes me sick to my stomach. My heart aches for this family because I know what this means. Cancer is a horrible disease and kids of all ages deserve a CURE.

I'm rambling at this point, but I have a lot on my mind as I sit here listening to my daughter whimper in her bed. September is Childhood Cancer Awareness Month and I know I have just posted about it, but I want you all to know. Please start asking companies if they support childhood cancer. Ask them if they sell products with a GOLD ribbon. Let's help these kids! PLEASE! In October everything is covered with PINK for Breast Cancer and I am happy for all these woman that get to feel someone more recognized and support, and my dream is for everything to be covered with GOLD in September. Spread Awareness. They deserve it.

Okay back on track, MILLIE. Millie is my HERO. Have I said that lately? I should.

Clinic Stats:

Height: 110 cm

Weight: 19.2 (42 lbs)

ANC: 5.1

( Her ANC was way to high for a child on chemo, we had to up all of her different chemo doses.)

CANCER SUCKS!

2011-09-02T12:38:00.000-07:00

September is Childhood Cancer awareness month!

My brave, little Amelia was diagnosed with Acute Lymphocytic Leukemia (ALL) on December 17, 2009.

LET THE AWARENESS BEGIN!

Miss Millie is still fighting her cancer today 1.5 years later. The average treatment for a little girl with her type of cancer is 2.5 years, and 3.5 for boys.

Many of you know that PINK is the color for breast cancer, but you may not know that GOLD is the color of Childhood Cancer. Please wear it proudly this month and help get the word out. Changing your facebook profile picture is a good start. It does my mama heart good to see GOLD everywhere.

Every year childhood cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, AND pediatric AIDS...COMBINED!! On average, 7 children die from cancer each day. That means that this month alone 210 U.S. children will die from cancer.

We learned the hard way that this can happen to ANY child at ANY time, lets do all we can to help find the cause and cure for all the kids that are fighting for their life and for those that have lost their battle.

You can visit these sites for info or to donate towards childhood cancer research:

http://www.curesearch.org/
http://www.alexslemonade.org/
http://www.curechildhoodcancer.ning.com/

This video is of Millie and some of her Cancer Fighting Buddies. One of our friends made it for the CureSearch walk this year. Every child in it is from right here in Utah. Yes it's sad, but it is also beautiful, and full of HOPE. PLEASE WATCH IT! You can spot Miss Millie in there a few times.

To see the full screen click on "CureSearch", it will be on the top, left side of the clip when it starts playing.

K is for Kindergarten

2011-08-29T12:43:00.000-07:00

I just got home from dropping Miss Millie off at school. She was thrilled to FINALLY be starting Kindergarten. She likes summer, but nothing is better then school. Mrs Patti taught her to enjoy learning and although Amelia is going to miss her dearly, she is also excited to learn all new things from Mrs. Robinson.

When her teacher asked what she wanted to learn the most she said, "I want to make friends, and read." I am so proud of my little girl. She showed no signs of nerves. She grab her friend Whitney's hand and they were off. She didn't even care to look back. I think that Austin was the one who was most upset by Amelia leaving. He cried for her all the way home. Poor little guy is going to miss having his big sis around all the time.

I Love You Baby Girl. You have fought hard to be there and I know you will do amazing things.

K- is for Kindergarten

T- is for Twirl

B- is for Barbie Backpack

S- is for Smart

M- is for Mischievous

A- is for Amazing

D- is for Darling

Love you Miss Millie have a wonderful day!

Happy Birthday To Austin...

2011-08-28T18:44:00.000-07:00

Austin had Brady light his birthday candle over and over again, and he sang Happy Birthday to himself. It was so cute.
I love my little man!

HAPPY BIRTHDAY AUSTIN

Austin Day 26 and 27

2011-08-27T20:09:00.000-07:00

Man, I have struggled with getting these videos up. Since I missed last night I decided it would be fun to post a couple of when Austin was a baby. He has always adored his big sister and I thought it would be fun to show that. She was the only one that could make him laugh, and the only one that could get him to talk. They have had a very special bond from the beginning.

The 1st video is Amelia getting Austin to baby talk to her and the second is him laughing hysterically at her. SO CUTE!

Day 27
Austin LOVES animals! So much so that he will kiss them freely even if he's stingy with giving us kisses.

Austin Day 22, 23, 24, 25

2011-08-25T21:45:00.000-07:00

ON ALL OF THESE VIDEOS YOU HAVE TO MAKE THEM FULL SCREEN OR IT CUTS OFF ONE OF THE KIDS.Day 22
I walked in on Austin playing a little dress up with his sis.

Day 23
"There Was A Little House"-FINALLY GOT IT!

Day 24
I Love You!

Day 25
Austin favorite show, Wild Kratts

Austin Day 21

2011-08-21T21:51:00.000-07:00

Only 7 more days to go and my little man will be 2!

Tonight's video is Austin and Millie attempting to slide down our stairs. I was at the Adele concert so my sweet hubby got this on camera for me. Thanks Brady

Now, don't mind my empty frames and weird pictures in the video. The picture gallery is a work in progress and some of the art work was the originals in the frames when I bought them at the DI. I just wanted to get the dang things hung.

Austin Day 20

2011-08-20T22:23:00.000-07:00

Austin thinks he can skip and he always does it when he gets excited about something.

Austin Day 19 and AMELIA'S CLINIC UPDATE

2011-08-19T19:25:00.000-07:00

Tonight's video was going to be of Austin splashing in the gutter water on our walk, but you get a little extra...

That's my boy.

Amelia update:

Amelia had clinic yesterday. It is so nice every time they come because I know we are a little closer to being done with all of this. Amelia started a new round in Maintenance which means she had to have a Lumbar Puncture. This is when they take out some of her spinal fluid and replace it with a chemo called, Methotrexate. Amelia was fabulous and like always she was a little trooper. Her Aunt Lindsay got to come with us this time and it was so nice to have her. Usually Lindsay takes Austin for me so this is the first opportunity she has had to come. Amelia wanted Lindsay to be a part of everything. They did crafts together, Lindsay held her while her PORT was accessed, she carried her throughout the hospital, and got to be with her when she went under anesthesia. Actually we both got to go back, which was amazing. They usually only let 1 adult in the room while they are put under.

Getting her bandage on over her PORT. It keeps the needle in her chest while she is up and about. I am so grateful for her PORT!
Dr. Verma checking her out.

Amelia couldn't be bothered to get her name check so she continued to color and without a word stuck her leg back for the nurse to read off her ID number.

Same when it came to to getting her Vincrsitine. She's too busy to stop even for chemo. I on the other hand always feel sick to my stomach when I see the nurse covered from top to bottom in protective gear and Amelia is getting this poison pushed straight to her little body.

The top picture is Amelia going under anesthesia and the picture below is her in the recovery room. Her amazing anesthesiologist came and got my camera and took this picture for me. We aren't usually allowed in the back until she starts waking up a little.

Now for the hair update:

I didn't post in July so there is a big difference since June. I can't believe how long it's gotten. Her curls are also holding on for now. And did you notice the lovely new bands? I should get a better picture soon, but she had been playing in the sprinklers and pushed them to the side a little. She got tree sap in them and decided I would be mad at her so she cut it out. It did not take one snip, but THREE to finally get it out. Yep, thought I'd be mad she had sap in her hair, not that she'd cut it. It was a smart move on her part since we have been telling her for the past 1.5 years that hair doesn't matter. Can't get mad at her for that one. She said, "It's just hair mom, it'll grow back. It's not the end of the world you know." She's right. It's just hair and at least she had hair to cut off in the first place.

Clinic Stats:

Height: 108 cm

Weight: 18.6 kg

ANC: 700

Wish us luck this week, she is already a wreck on her steroids. I hate hate they make her feel so awful and there's nothing we can do.

Austin Day 18

2011-08-18T18:02:00.000-07:00

Amelia had clinic today and since it was the start of a new round she had to get a Lumbar Puncture. She did wonderfully as always, and I will try to post more about it tomorrow. I never did update in July so we are way past due on an Amelia update.

One of the videos I wanted to get of Austin that I thought would be the easiest was him playing He-Man, I was mistaken. I finally got it tonight. It's not the cutest, but oh well. He always holds anything that remotely resembles a sword up in the air and hollers He-Ham. I love that both my kids like She-Ra and He-Man.

Austin Day 16

2011-08-16T19:42:00.000-07:00

I wanted to video Austin singing "There Was A Little House" but he kept getting distracted, or he flat out refused so even though this video was my 7th attempt I decided to give that up for today and have him ask for a Piggyback. They are his favorite and I LOVE how he says it.

Austin Day 15

2011-08-15T22:34:00.001-07:00

This video is a result of what happens when I leave my children with their Aunt Codie and Uncle Griff who keep them up WAY past bedtime and load them up with A LOT of sugar.

(it starts out dark and you can't see anything but a light comes after a sec)

Austin Day 14

2011-08-14T21:38:00.000-07:00

You Are My Sunshine.

I have sung this to Austin since he was a tiny baby in the NICU. He has always been my sunshine. Austin was only a few months old when Millie got diagnosed with Leukemia, but that didn't stop him from being the only person that could cheer Miss Millie up during her most difficult times. He has been ALL of our Sunshine and I am grateful to him for that.

I also love that he has to stop in the middle to yell at Amelia for singing with him. He is such a pain, but I sure adore him.

Austin Day 13

2011-08-13T22:06:00.000-07:00

First of all I have so say CONGRATULATIONS to my sister-in-law Carly and her new hubby Kyle. We are all extremely happy for you guys!

Tonight's video is of Austin hopping down the stairs at their reception. He probably did it 20 times before I finally walked away.

Austin Day 12

2011-08-12T22:04:00.000-07:00

It's FRIDAY!

Because 1 video of Rebecca Black's Friday isn't enough I have 2 for you tonight. The 1st is more Austin singing but he is so tired and lays down for the majority of it. The 2nd shows Austin's rad dance moves. He usually runs around in circles, but he gets his groove on a little better this time.

Austin Day 11

2011-08-11T21:14:00.000-07:00

Austin Day 10

2011-08-10T21:36:00.000-07:00

Austin singing ABC's, kind of. If he'd let me help him a tiny bit I know he'd make it all the way through them because he use to sing it perfectly. He's a pain and every time I try to remind him of what comes next he yells, "MOM" at me.

Did you notice the treat in his hand? Bribing him was the only way he would even consider letting me video him tonight.

Austin Day 9

2011-08-09T19:56:00.000-07:00

Austin Day 8

2011-08-08T18:40:00.000-07:00

Grandpa's Little Helper

Austin Day 6 and 7

2011-08-07T19:23:00.000-07:00

Yes I know I missed yesterday but it was for a good reason. To make up for it I will post 2 videos tonight.

Love him.

Austin Day 5

2011-08-05T19:14:00.000-07:00

Okay, so I am starting to wonder already if I can keep this up. It has been so hard to find time to blog this summer and here I am forcing myself to post every night. I am going to try to keep it up but it's tricky.

Tonight I did an easy clip, Austin on the trampoline. He LOVES to jump, well he loves to jump as long as he is by himself and no one is bugging him.

Ps, isn't my fence beautiful! My dad just finished building it for me. We are going to wait and stain it next year, but I think it's stunning. That is also why my yard is such a mess. We have been turning sheds, moving playsets, and rearranging sprinkles. That post is for another day.

Austin Day 4

2011-08-04T20:24:00.000-07:00

Austin Day 3

2011-08-03T22:12:00.000-07:00

It was a close call but I made it before midnight...

Today's video is 2 different clips of Austin singing The Little Mermaid song. I am posting 2 clips so you can get the full effect.

The first one was taken by our friend Noor that came to visit and the second one was taken by Cousin Sherry. Both are in the car because he sings along with the cd the best and he thinks no one is watching. They are a little shaky, but good. I am not kidding when I say this boy won't let you video him. In the first clip he looks at the camera, stops singing, says uh-oh, and then points at it. After that it's mostly him just sitting there so you can skip the rest.
Enjoy!

Do you love that my boy sings Ariel? I do!

Austin Day 2

2011-08-02T19:16:00.000-07:00

Austin is the worst when it comes to sharing and if he thinks anyone has done him any sort of injustice then he yells "HEY" at them. Normally it's followed by the persons name, but he wasn't cooperating this time. I know I shouldn't like it, but I do. It always makes me giggle. He is such a stinker. Tonight while we were eating dinner Austin starting shouting, "Hey" at me because I snagged a french fry. I thought I'd pull out the camera and try to catch him in the act.

My man at 2 days old.

Tomorrow I am going to try to get him singing. Stay tuned...

The Month Of Austin

2011-08-01T15:09:00.000-07:00

Austin will be 2 this month and to celebrate I thought it would be fun to capture him on video every day until his birthday on Aug 28. He refuses to let me video him and if he sees a camera he automatically stops what he's doing so this is not going to be easy. Austin has so many silly things that he does and I want to always remember them so we are going to try anyway.

Here's goes nothing....

Day 1: Playing with shoes

I will also include a picture or two from his 1st month of life in the NICU with every post.

Austin Brady Flamm

4lbs 11 oz

i heart summer

2011-07-22T20:24:00.000-07:00

Life has just been way to crazy to blog lately and I am soooo behind. I find myself saying that every time I post these days but it's the truth. I feel like I am always playing catchup. Summer as been just about perfect. We have been incredible busy and all in all Millie is doing well and so is Austin.

Here is a little of what we've been doing around here.....

Playing A LOT of dress up.

Jumping on our new FREE tramp that our neighbors gave us. THANK YOU!

Millie lost her 1st tooth while we were up at the Family Ranch over the July 4th holiday. She couldn't wait to tell her friend Melody from preschool.

We lit a ton of fireworks.

M: is for Millie

A: is for Austin and Amanda

Hanging around the house.

Singing and Dancing.

Cooking and more cooking for our bake sale to raise money for CureSearch. Thank you again to Tony Burger for donating all your proceeds to their walk and for allowing us to have a bake sale in front of your restaurant.

I blogged about it, I facebooked about it, and I told everyone I know about it, and you responded. THANK YOU SO MUCH for those of you that donated and came out to walk with TEAM AMELIA on July 9th. With your support we helped to raise over $72,000 and this was CureSearch 1st annual walk here in SLC, think of what we will be able to accomplish next year! I know this will be a family tradition for us and I hope it will be for you as well.

The Whole TEAM AMELIA (well most of it).

Angela Millie Zane

Roscoe Oliver Brady Jesse

Cyndell Amelia Brianna Lilly Kaylee

Our Fam

Amelia "Matilda Jane" Ellie
Jenni Dani Amanda

A very special THANK YOU to Jeremy Wilkins for designing our cool shirts for us.

More Summer posts coming soon, including Millie's July Clinic Update.

Summer Update and Clinic June 2011

2011-07-01T07:27:00.000-07:00

I have been horrible at blogging lately. I am so behind! Miss Millie has had quite a lot going on.

First of all we went to Lake Powell with the Flamm Clan. Millie LOVES Lake Powell she will talk about it all year until it's time to go again. We had such a great time with Millie. We decided to leave Austin at home for this trip because he is such a wild man. I missed him like crazy, we all did, but it was nice to get to spend some 1 on 1 time with Millie. She hadn't been herself the last couple weeks and it was nice to see her smile again. Leaving Austin back home also made Lake Powell a lot less stressful. I could just see him trying to sneak out every time the house boat door was left open. He is a sneaky little fella. Austin had a blast playing with the Petroff's and Cousin Sherry. Thank everyone for taking care of him. It was very reassuring to know that he was with people that loved him so much.

boating. sand castles. games. air chair. family. paddle board. swimming. lots of laughs.

Amelia was able to experience Summer Camp for the 1st time. I would have never thought it possible for me to feel comfortable sending Millie off to camp while she's still on chemotherapy treatments, but this camp is specifically for children with cancer. I am so grateful to Camp Hobe and all is amazing volunteers that made it possible for Millie and so many other children with life threatening illness to attend. Amelia loved every second of camp and she hasn't stopped talking about it since she got home early last week. THANK YOU CAMP HOBE. Sadly I didn't have my camera, but Millie has been tagged in some pics on facebook, so you'll have to check there if you'd like to see Camp Hobe pictures.

The next day after camp with had a HopeKids event that we wait all year for... The Princess Ball hosted by Cinderella herself. It was a magical night! She was able to ride in Cinderella's carriage, meet and take pictures with ALL the princesses, have a princess lesson on manners, and then dance the night away. Thank you HopeKids and to everyone else that made this amazing evening possible. Millie really did feel like a princess.

Ariel was my favorite of the night. She spent a lot of extra time with Millie and even sang with her! Millie was in heaven. Thank you Ariel!

The next day Amelia had clinic and I sent Brady with her since Austin was having a hard time since we left him for Lake Powell and Camp. She had been doing wonderfully and I thought it would be business as usual and I wasn't expecting any hiccups. Then I got a call from Brady that her ANC was only 300! That is so low and means she has little to no immune system. Her doctors took her off her 6MP and Methotrexate for now, but she still did a round of steroids (glad that's over) and will of course be continuing with her antibiotic, Septa.

It's been a long week spending the majority of our time at home and away from the outside world. We do not need a hospital stay and if she were to get sick with a low ANC they'd admit us, No Thank You. Although honestly I don't think Millie would mind. She likes staying at the hospital. She says she gets to ask for whatever she wants and usually she gets it.

It's now been a week since her clinic visit and she has 1 more to go before they will retest her blood levels and ANC. Usually after 7-10 days their counts come up but we won't know anything official until the 7th.

Thank you so much to everyone that has called, texted, or run something over for Millie and I. It has meant a lot to all of us. We are incredibly grateful for all your love and support.

Onto Millie's Hair
Amelia also wanted to show her hair in pig-tails since it's finally long enough. Not all of it fits, but close enough :)

Clinic Stats

Height: 107.5 cm (about 42 inches)

Weight: 18.7 kg (about 42 pounds)

ANC: 300

Please Help and Come Walk

2011-06-03T10:25:00.000-07:00

As the weather gets nicer, we are seeing lots of walks and races pop up. This is so exciting, but it can also be confusing. As much as we want to, our family can not possibly support all of the many cancer walks out there. You really have to do your research when it comes to these fundraisers. I think it is important to make sure the money our family raises is going EXACTLY where we want it to go (to finding a CURE for these cancer kids). With the help of some of the more "seasoned" cancer mom's, we have done the research and found the right organization for us...

CureSearch

CureSearch funds the Children's Oncology Group (or COG), the world's largest children's cancer research collaborative. Primary Children's is a COG hospital (meaning that some of the oncology staff and Doctors participate in childhood cancer research). This means they give money to researchers who are working DIRECTLY with our kids. This special group of medical professionals are trying to find better treatment plans for our kids, less side effects, and ultimately a CURE to childhood cancer. How amazing is that?!? The best part? 100% of donations will go DIRECTLY to this amazing research. This is SO SO SO rare in any organization.. 100%-wow!! I was floored when I found out that CureSearch was holding their first ever walk in Salt Lake City! This means that our family will have a chance to participate in raising money for something that has become incredibly close to our hearts...and so will YOU!

The walk is July 9th and only $10 bucks. We are using this walk as a celebration of Amelia for FIGHTING and WINNING cancer! She has made it through so much and she has always come out with a smile. This little girl is amazing and we want to show her our support by rallying around her at this walk.

BUT we need your HELP!

I am calling all Amelia supporters. Please come be part of the CURE for childhood cancer. If you have been touched by Amelia and her cancer buddies, if you have learned from their strength and courage, if you have read this blog and wondered how you can help...this is your chance! These kids didn't ask to get cancer and they certainly don't deserve all the pain and suffering that goes along with it. They are too young to speak for themselves. We need to be their advocates, and their voices. We may not be able to take away their pain, but together we can help them to have the chance at a better life and better cure.

All of these children suffer from childhood cancer...just look at those smiles!

Here's what you need to do...

There are many ways you can help our family make this fund raiser a HUGE GIGANTIC success.

#1- Join Team Amelia. Come walk with us on July 9th 2011 at 9AM for the CureSearch walk. It will be held at Liberty Park in Salt Lake City, Utah. It is only $10 to walk and show your support, remember every cent of your $10 will go towards finding a CURE for childhood cancer. Click here to go to Team Amelia's team page and sign up TODAY! We are making shirts for our team so if you decide to walk and would like a shirt the cost is $8. EMAIL ME at amandaflamm@hotmail.com and I will send you the info you will need to get one. YOU DO NOT NEED TO PURCHASE A SHIRT TO WALK WITH US, this is an extra. We just hope to see you there.

#2- Become a virtual walker on Team Amelia. Many of you won't be able to physically come and walk with us that day. That's OK! You can sign up to be a virtual walker and still be a part of our team. Click here to register to be a virtual walker on our team! Make sure you select the "virtual walker" option.

#3- Donate to Team Amelia. You can donate ANY amount, remember it ALL goes to finding a CURE for the kids. Click here to donate.

#4- Get your company involved. We are looking for corporate sponsorship. If your company is interested in raising money for CureSearch, if they do a dollar match program, if they want to support and advertise plus get a nice tax write-off please contact me at amandaflamm@hotmail.com

#5- Volunteer. You can host a bake/garage/lemonade sale, help us pass out fliers, hang posters, or volunteer the day of the event. Email me at amandaflamm@hotmail.com if you'd like to help out.

#6- Tell EVERYONE you know. Link this blog post to your facebook, blog and twitter. Tell your family and friends to participate. People can sign up/donate to be on Amelia's team, create their own team, or donate to CureSearch in general. No matter how you chose to participate, it is a great cause worthy of LOTS of support.

Not only will you be helping these kids, it is going to be a BLAST! There will be live entertainment, activities for the kids, lots of great food, and plenty of good company. It is sure to be a day the entire family will want to make a tradition year after year. We cant wait to see you there!

Also, please take a second to watch this video our friends made to help bring awareness to some of our local fighters here in Utah and to CureSearch. Grab your tissues. I can't get the video to post, so click here to see it. Or copy and paste the link http://www.youtube.com/watch?v=e9Pam10D7bU&feature=youtu.be

We are honored to have so many wonderful family and friends that support us. We can't wait to see you on July 9th! Thank you all so much for everything you do for us. We love you.

Clinic Update May 2011

2011-05-31T19:59:00.000-07:00

Silly Miss Millie had clinic last Thursday and she had to get a Lumbar Puncture. I hate LP days! Her doctor removes a syringe full of spinal fluid and replaces it with a chemotherapy drug called Methotrexate. If they are off at all then she is in a lot of pain. Thankfully Millie has only had a bad experience once before. It was horrific and she couldn't walk for days. Everything went perfectly this go-round and she was running around like a crazy lady once we got home and her anesthesia wore off. This girl won't let anything get in her way, not even high doses of chemotherapy. She really is my hero. I have learned so much from her.

Amelia also received her monthly dose of Vincristine through her port. She never complains when they access her port, she'd say, "I didn't even make a peep". She does hate the way the cleaner smells that her nurses uses to scrub and sanitized her skin, she always makes a disgusted face and plugs her nose.

The lighting isn't very good, but if you look close you can see the needle they use to access her port. It kind of looks like a a giant thumbtack.

Then Dr. Barnette, her Oncologist, came in to check her out and answer my questions. Millie is always seen by 2 different docs and a nurse. It's comforting for me to know so many people are checking her out.

I want to give a little shout out to Dr. Barnette, because we love him. I always have a lot of questions and he is so wonderful to sit there with me and go over everything. I adore him and I am grateful for everything he does for Amelia. He was the 1st Oncologist we had seen in the ER when Millie was first diagnosed and he has been there for us through this entire process.

Millie's Nana got to come with us this time. Mill was so excited to have her there reading her stories while we waited for the anesthesiologist to get there.

And For Millie's Hair...

Austin wanted to join the party.

Clinic Stats for 5/26/2011:

Height: 107.5 cm

Weight: 17.9 kg

ANC: 1.8

We survived another week of steroids as well. Millie was emotional and hungry as usually, but I am always impressed by the way she handles herself. When she does throw fits or knows she is sad for no reason she tries very hard to control herself.

Preschool Grad

2011-05-28T07:07:00.001-07:00

A few weeks ago Amelia's preschool class had an art show. They had being working really hard on all their projects and Millie was really excited to show them all to us.

They also did a little program and it was wonderful. I love to watch Millie sing, she is always very animated. I just think that little girl is hilarious.

Earlier this week Millie's class went on a field trip to Wheeler Farm. They all had so much fun and I was glad I got to go with them.

The little man got to come too.

On To Graduation...

I can not believe my baby girl is finished with preschool and ready for kindergarten. It's so strange to think that from this point on she will go to school every single day for a very long time. She is so smart and we are very proud of our Silly Miss Millie.

Congratulations Bug!

Millie's best friend at school is Melody. She adores her and talks about her all the time. Braxton on the other hand is Millie's 1st crush. She won't admit to liking him, but she is defiantly smitten. She tells us all the time how Braxton likes her, and thinks she has the BEST laugh (I have to agree!).

I wanted to take a picture with Melody and Millie and so I told her to put her arm around Melody. She did, and then she looked at me with her eyes bulging and tilted her head towards Braxton. It was very obvious that she wanted me to tell him to put his arm around her. I did, and the she burst out into the best giggle I have ever heard. It was so funny!

I don't know where to even begin when it comes to Mrs Patti. We ALL adore her. She was an amazing teacher when I had her has a little girl and she has been a huge support to Millie throughout out her cancer. Patti will always be someone I am grateful for knowing. She made sure that school was a safe place for Millie to be and I cannot begin to say how wonderful I think Patti is. I am so happy that Millie was able to be apart of Mrs Patti's last class before retiring after 25 years of teaching.

The Gang
Cami (cancer buddy), Brady, Me, Millie, Aunt Lindsay, Jager, Cousin Sherry

Love you Mill!

when there is silence

2011-05-23T13:07:00.000-07:00

there is trouble

Thank You!

2011-05-22T21:11:00.000-07:00

Brady and I wanted to make a little slide show of Amelia from the time she was born until now. We are so thankful for the love that we have been shown and the generosity from our family, our friends, and from the strangers who have donated towards Operation Millie. The majority of our donation have come from people that didn't know we even existed until now. I am astounded at the support our family as been given. There are no words to express exactly how I feel. We have been incredibly overwhelmed by your love. I want to say THANK YOU and let you experience a small blip as to how amazing Miss Millie really is. The last 2 weeks have been something I will never forget. We have truly been in awe has to what the UteFan website has been able to accomplish. Thank you a million times over.

happy anniversary

2011-05-16T21:39:00.000-07:00

It's an hour early, but....

LOVE YOU BABE!

Maniac Millie

2011-05-13T22:20:00.000-07:00

Oh how she makes me laugh.

Overwhelmingly Blessed

2011-05-10T12:59:00.000-07:00

I have gone back and forth about whether or not to share this particular story with you that follow us on our blog because you have done so much for us already and we don't want you to feel like you in anyway need to do more. We have had meals brought to us by you, letters from across the world poured in for Millie because of you, gifts to brighten our day, prayers have been offered, my house cleaned, or something as simple as sending a text to see how we are. I would never take for granted the blessing we have seen come to our family the past couple years from our support system. We did however have the most amazing thing happen to us and I want everyone to know about it and know that I have a whole group of complete strangers supporting Amelia and my family right now in a different way.

We were asked by a mom from my sister Lindsay's preschool if her husband, who is a web designer, could put together a site for Millie. At first I was a little confused because we already have a blog where I update on the family and keep people posted about Millie but when I learned more about what they wanted to do I was overwhelmed with gratitude.

Her husband, Brian, works for a company called RealCove and he asked me to write Millie's story so he could share it with the Ute Fan website. At this point in Millie's treatment we have not asked for help financially because we decided we would focus our efforts towards the charities that we love and have done so much for us. Although we have been overwhelmed it just never felt right having a fundraiser for ourselves. In the meantime Brady and I have been very stressed about the never ending bills that keep coming our way. We have had to put off a lot of our plans for the future because nothing is more important to us then our children. Brady even developed a heart condition from the stress of everything and blackout hitting his face when he was on a business trip in Denver.

Isn't he pretty

Brian set up a link for the UteFans, where he wrote what I have copied down below. You can also read our story in my words and see Millie's new website here, along with more written by RealCove, the creators of "Meet Millie". We are so grateful for the help we have received at this point and overwhelmed at the response that Millie's page has already had. Thank you so much to everyone for your love and your support. My sister said it best, "We get to see the blessings that tragedy brings." It is so true. Our little family has faced a lot the past while, but we have also seen amazing things happen because of the love that surrounds us

In the words of Brian (some of the pictures are different then the ones he had because they wouldn't load properly):

This is Millie. She is one of my heroes. She and her family are also diehard Ute Fans (as are most heroes).

In 2009 Millie's mom had to have an emergency C-section, her new little brother spent a month in NICU.

After 31 extremely stressful days Austin was sent home on oxygen, but what the family didn't know was that Millie was actually very sick. She wasn't herself, she tried to be happy, but she just couldn't be. She was whiny and complained that her legs hurt, and often asked to be carried.

A worried mom fought through doctors that insisted that this was just normal child behavior. She finally insisted that she have a blood test. In December of 2009, Millie was diagnosed with Leukemia.

This is Millie on her diagnosis day

Millie began a valiant fight, and she is very brave, but it hasn't been easy. The steroids made her body bloated and too much for her little legs to carry.

And she needs chemo treatments through 2012.

The first thing Amanda, Millie's mom, said to me when we first talked about this was that she didn't quite know what to do, they hadn't ever asked for help like this before. The truth of the matter is, these are exactly the type of people you want to help. They haven't focused on themselves, but if you read their blog you'll find they are supporting others, and other causes to fight cancer.

But the truth is, in addition to the hardships that Millie is fighting through, there is a toll on the family both physically, mentally and emotionally. There is also a toll that can last much longer than the effects of this terrible disease, and that is the financial burden.

They are lucky enough to have insurance, but despite it there are still growing bills and they need help to ensure that Millie gets her treatments through 2012. Having had my best friend go through this, I can say that approaching lifetime max's, on top of copays, coinsurance and treatments that are simply not covered by insurance, the bills are overwhelming.

Treatments are going well, she just needs to be able to cross that finish line.
I know that this board (http://www.utefans.net/) is capable of doing great things together, we've done it before. We've raised lots of money for deserving people and families before, and WebMonkey and I agree that while there are many deserving people out there, the Flamms are certainly one of them we should get behind as a community.

The whole story can be found at a site we put together for them here. You can donate money there. 100% of the proceeds will go to the Flamm family. If you can help them out, it will make all the difference. If you are tight on funds, skip a meal, or a Starbucks, and consider what it would mean to you if you were in their shoes.

Take a minute to check out the site, the photos alone will break your heart and also help you see what an amazing and resilient person Millie is. You know me, I hate everyone and this little girl has won my heart over.

Let's do something great this summer, dig deep and make a miracle happen for such an inspirational person. I declare Operation Millie!

*This is Amanda again; Operation Millie has been very successful and is still going strong. There are no words to express my gratitude. I am in shock as to what has come about because one person decided to create a website. I whole community has stepped up to support us, along with their friends and family from other states. Thank from the bottom of my heart.

Meet Millie.....

Clinic April 2011

2011-05-06T11:34:00.000-07:00

I am so behind on my blogging. Millie had her monthly clinic visit on Thursday April, 28th. She is looking really good. Her blood counts and liver enzymes are still stable so they went ahead and upped her to a 75% dose of her daily chemo. As much as I hate chemo and the side effects it brings I love it for keeping Millie's cancer away, so I am glad we are up and running again. They will check her in about another week to see if she can handle the full 100% dose without her liver going haywire again. We also scheduled a lumbar puncture for next month. Hate those days. :(

I forgot my camera so there are no pictures of clinic this month, but here is Millie's hair in all it's glory.

*Blogger does not want to upload my pictures at the moment. Please check back later for Millie's hair pics.

Clinic Stats

ANC: 2,200

Height: 106.5 cm

Weight: 18.1 kg

Easter

2011-04-25T20:13:00.001-07:00

I love everything about Easter and I always have. Since I was little it has been my favorite holiday. It is a beautiful way to celebrate the atonement of our Savior Jesus Christ.

This year we headed to warm St. George for the weekend. It was gorgeous! We couldn't have asked for a better weekend.

I tried to take some picture of the kids in their Easter clothes, but Austin was having NONE of it. This picture about summed it up.

A few more of my attempt to get a decent shot...

When we got back to SLC we visited Brady's fam and Millie got to play with the bunnies (her fav), then we went to my parent's house. It was a good thing we did too. My mom like always had created a feast! There was food galore and we were happy to help them gobble it up. :)

I love this picture of Austin and Brady. He adores his daddy and I think it's so sweet they were holding hands.

Miss Millie Austin also turned 20 months on the 28th of April so I thought I would post some pictures of him with all his silly faces from the weekend.

He is such a funny little guy.

I love my little man

Come join us for an evening of Hope!

2011-04-20T12:48:00.001-07:00

Brady and I have worked extremely hard on this event and we hope you can join us. Please send on the info to anyone you think may be interested in attending. HopeKids has made the daily struggle of living with cancer bearable for Amelia and we will always be grateful to them. If you have any question please email me.

You are invited to

Faces of Hope

Dinner and Auction
to benefit the Utah Chapter of

HopeKids

Saturday, April 30, 2011, 6:00 PM
Pierpont Place, 163 Pierpont Avenue, Salt Lake City

6 PM: Cocktails and Silent Auction
7 PM: Dinner, Raffle Drawings, and Program
8 PM: Entertainment by Peter Breinholt

M.C.: Marti Skold, ABC4

Tickets available online at
http://facesofhope.hopekids.org

Many, Many Thanks to our Sponsors
eyeQ by Infinite Mind
Candlelight Homes
ZAGG
Utah Food Services
Pierpont Place
The Crawford Family Foundation
Layton Construction
Neutron Interactive

Cancer Fighting Cuties

2011-04-17T19:31:00.000-07:00

We had a play date with the other cancer kiddos at wheeler farm on Friday. It's so nice for these little ones to get together and be with other kids that know exactly what they're going through. There were eight cancer kids there total, and that's only a tiny portion of our Cancer Fighting Cuties group. I love all of this little people so much and admire them for their strength. I wish I'd gotten more pictures, there were two other little cuties, Nathaniel, and Jenna with us and I didn't get a shot of them :( . Thankfully there was an amazing photographer there with us taking pictures of all our cuties! Jen is awesome and she volunteered her time and talents to come take some shots for us. I have already seen a few and they are stunning, I can't wait to see the rest!

Thank you Jen so much for your kindness. These pictures will be priceless to all of us moms.

Millie, Izzy, Carson, Cami, Brinley, Elli, Koda

Clinic March 2011 (part 2)

2011-04-03T16:30:00.000-07:00

Millie goes to clinic every 28 days for her regular check up and for her Vincristine. I say "regular" because we have been at the hospital way more then that this past month. Anyway, she ended up having 2 March appointments so that's why the "part 2".

Things seem to be looking up. Her liver enzymes are so close to being back to normal. Dr. Barnette would have started back on her oral chemo but her dang ANC dropped again so she will be off it for another 2 weeks. It's now down to 200. We haven't seen her get this low in a long time and once again we have no idea what's going on. We were given a couple different reasons but all of that seemed to be an educated guess. It's frustrating to not know why things are happening. Amelia did seem to be feeling better. I say DID because her appointment was on Thursday and now she's been on steroids for 4 days and she's a disaster. The poor girl breaks my heart when she's on her steroids. She is so emotional and as a 5 year old she doesn't know how to handle it. Hell, I wouldn't know how to handle it. Being at a 200 ANC means that we have to be incredibly careful with her. If she were to get a fever at all she would be admitted immediately. NO THANK YOU! They steroids will help her ANC come up so they are good for something ;)

I'm jumping around a little bit, but I'm so tired and when I'm tired my brain doesn't work properly. All in all clinic went well. Millie did fabulous as always. Brady was even able to join us which was excellent. Dr. Barnette seems to think the liver problem was a virus (even though they couldn't find anything) and hopefully they will be able to put her back on her oral chemo in 2 weeks when she gets retested once again. They did give her Vincristine through her port because she's on a schedule and the rest of her counts were looking better.

Before I get into the pictures I just want to say THANK YOU to all of you out there praying for us and thinking of us. I have had so much support this past month and I can honestly say I have needed it. My Relief Society in my church has been amazing. They have brought meals, covered my lesson, stopped by to bring treats, and dropped off little notes. A friend from high school that I haven't seen in years sent flowers, other cancer moms that are going through a difficult time as well have brought me dinner, neighbors have come by to see what I need and brought flowers, and gifts for Millie. My mother in law has made me meals, my fam has babysat Austin, the list goes on and on. I am overwhelmed with the love we receive.

Brady and I have also been very involved with trying to help get donations for the HopeKids charity dinner and I have had people coming out of nowhere and putting together amazing packages for them to auction off. I am truly stunned and eternally grateful. I have had so many people ask what they can do to help and I don't know what to say, well I do know what to say, but it's not the easy answer. I need help with HopeKids and I am so grateful for those of you out there working on projects for all these kids or gathering donations. HopeKids is AMAZING! If you ask Millie about her Leukemia she will tell you she likes it. Of course she doesn't like her Leukemia, she doesn't really understand what that means. What she does understand is that she has been able to do some amazing things and meet amazing people because of her cancer. She has made friends that she wouldn't otherwise know. She can see the blessings that have come from her cancer. She is beyond her years in wisdom. For her, HopeKids makes her life normal. She is not alone. She can play. She can have fun. She can have HOPE.

Not sure where all that came from, but there ya go. I HEART HopeKids.

Now for the pictures!

Millie getting her port accessed. She does extremely well. She doesn't flinch or ever make a peep. You can see the pain in her face as the nurse is pushing the needle in, but she is one brave cookie.

Mill didn't want me to take a picture getting her chemo so she kept putting her hand up. I couldn't resist posting it. I love the marker all over her cute little hand. (ps, she wasn't sad about getting her chemo. she was teasing me. that's what she does, teases).

I got one anyway...

Millie's Hair Update:

I snapped this one of her going back in the house and I love how much you can see all her curls and natural highlights.

Clinic Stats:

Height: 106.5 cm

(yes, it's less then before, I guess I better make sure they are more accurate)

Weight: 16.6 kg (HOORAY! It's going back up)ANC: 200 (NOT GOOD)

Liver Enzymes:

AST: 48

ALT: 98 (still a little high)

Bedhead

2011-03-29T07:09:00.000-07:00

This was last weekend. Millie was so sick and tuckered out. All she wanted to do was lay on the couch.

These were 1 of the many days this past couple weeks we have been at the hospital. I love looking at these pictures. Not because Millie was sick, but because even though she is sick she still has a smile on her face. She is one strong cookie. I also LOVE LOVE LOVE her bedhead. It makes me smile :)

Holding her fists up to show cancer who's boss.

Goofing around with Dr. Barnette

Millie had her blood drawn yesterday morning and I got the call that her ANC has dropped again. It's now 700 from 1000. Her liver enzymes are continuing to come down, which is great, but they are still too high to start chemo.

Millie has her regular clinic appointment on Thursday and they will retest her then. As for now we will enjoy the chemo break.

Millie Millie

2011-03-26T10:04:00.001-07:00

I got the call from Millie's doc Friday late afternoon. Her ANC has come back up to 1000, Phew. Her liver seems to be on the mend as well. Her enzymes are coming down but they are still too high to start chemo so they will retest again on Monday.

At this point they are assuming that it was the chemo causing the problem so when they do start her back on it, it will be a gradually process.

Thank you all so much for your prayers and your support.

Millie Updates From The Past Week

2011-03-24T08:14:00.001-07:00

I have been sending emails to my family letting them know what's going on with Millie but I haven't wanted to blog. I decided instead of rewriting everything I would just post the emails so you all can be updated. I am so grateful for all the calls, emails, texts, and prayers that have come are way. I also posted at the bottom an update on today if you have already received the emails.

email 1: Millie Update from last night: (Monday, March 21 @ 7:00pm)

On Friday they said that there was nothing more they could do and that it would just be a waiting game. With Millie coming off ALL chemo her diarrhea and liver enzymes should all get better. Brady also got a root cancel and when I was talking to Dani (cancer mom that lives in St. George)about how frustrated I was, she said that we should come down and have Ashton (her husband) do Brady's crown. He would only charge us lab fees which would safe us like $400. We found out from Dani Friday, late afternoon that this past weekend would be the best since Ashton has a lot going on the next couple weekends. Millie's doctors gave her the ok to go and we actually thought it would be a nice break for Millie. She loves it there and it would be a nice change, plus they said they can do nothing more for her.

She did great all weekend. She got random cramping only like 3 times where before it was pretty frequent. After Brady got his tooth fixed Saturday I finally got a hold of the On-call doc and she said that all Millie's stool samples came back negative (which is good). This meant that it was her liver and 6MP that was causing the diarrhea and not a bacteria. She only got diarrhea twice while we were gone, so things were looking better. Last night around 9:00 pm she started screaming about her stomach. 2 hours later she started throwing up like crazy and was screaming in pain again. We decided to take her to the ER and they knew nothing, like always. They didn't even tell Brady what her counts were, they just let her go after 6 hours and $200.

I called the clinic today (March 21) and Dr Verma is worried. The results from last night said that her ANC dropped from 1800 to 700 and her ALT went from 997 to 1157, but her AST dropped from 557 to 457. They want her to come back to clinic to run more tests. Dr. Verma is upset about her levels and doesn't understand why the ER did NOTHING. They didn't even give her fluids, which would help the liver. Dr. Barnette, our Oncologist isn't there today so they are making us wait until tomorrow unless something else happens today and then we will head up.

Cancer Sucks.

Please keep Miss Millie in your prayers

Love,
Amanda

email #2 (Tuesday, March 22)

Millie had more blood and stool tests today. Everything has come back negative. What does this mean? Well I don't really know. It would be unusual for her chemo to suddenly be effecting her liver like this, but there is the possibility that her little body has just had enough. They can't seem to find a reason. Her liver enzymes have come down. Her ALT is 751 and her AST is 212. They are still both high, but better. Her weight is stable, she didn't gain, but she didn't lose :). Her ANC has dropped again which is a little strange since she is off her chemo. It is now at 600, Friday it was 1800, Sunday night 700.

The game plan is to continue keeping her off her chemo until her levels are normal again and let her liver recover. We will re-test everything on Friday. Thankfully Home Healthcare is coming so we won't have to spend another day in the hospital.

Thank you all so much for your prayers. We love you and our grateful for you.

Love,
Amanda

Today (not an email): This morning Millie is doing well, but we are all exhausted. Last night she was up all night in pain and with an upset stomach. This is the 3rd time this week we have had to shower her in the middle of the night. She is breaking my heart. I hate seeing her in this pain and I hate that we have hit 3 weeks of this none sense. 3 weeks! I called clinic again asking what we can do for pain but I haven't heard back yet. It's all so strange because she'll be fine one second and then horribly sick the next. What is going on? I really can't wait till tomorrow. I just want to know what all her blood and liver counts are.

Thank you everyone for your support.

What The Heck

2011-03-18T16:05:00.000-07:00

Millie has had diarrhea on and off for a little over 2 weeks. NOT COOL. I knew it wasn't that she was sick with a bug because it was very random as to when her stomach would get upset. It seemed to have nothing to do with what she ate, or when. She would just randomly be sprinting to the bathroom and then she'd go a day without being sick at all. The poor girl was up all night Thursday night and I had had enough so I insisted she be seen at clinic. I had called several times before this, but I felt like they were treating me like I was a bit nuts. It's only diarrhea. Well that's not all it was. After the head nurse in the Oncology Clinic saw Millie they knew something wasn't right. They pumped her full of fluids, took blood and stool samples, and we waited. Millie's preliminary blood counts started coming back and everything was looking good. Our nurse Mindy (who is one of my favs), thought that she would be needing a blood transfusion for sure but her hermatocrit was great. Then we finally got her ANC and it too was great.

Then they can rushing back in and told me to stop all chemotherapy immediately. Amelia's liver enzymes were off the chart. Her poor little body is so out of whack. Just when we think she is in the clear and we are on the "easy" stage something like this happens. I am sick that Millie has been in so much pain over the past two weeks and that everything we were doing for her was making it worse. She has Zofran for nausea and it's extremely hard on the liver. Man, sometimes I wonder what in the heck I'm doing. Being a mother is exhausting. I just want to help her and take away all her pain. I hate that she has to deal with such horrible side effects. She even lost 3 pounds in 2 weeks. On a tiny little body like hers it's A LOT of weight. That's actually one of the reasons I insisted on them seeing her. She was getting way to skinny.

Now it's a waiting game. Millie will get re-tested on Friday and hopefully we will have some more answers as to what's going on with her.

Millie's Current Counts vs. 2 Weeks Ago

Height: 107.2 cm vs. 107.2 cm

Weight: 16.0 kg vs. 17.3 kg, ( 3 pound weight loss)

ANC: 1800 vs 1000

Liver Enzymes:

ALT: normal range 10-25

Millie's 997

AST: normal range 15-50

Millie's 574

Tea and Crumpets

2011-03-11T16:43:00.000-08:00

Amelia was invited to a Tea Party this past Wednesday and once again there was magic in the air. I know it sounds cheesy, but it's the truth. There are no words to say how much I love Make-A-Wish. There are a couple charities that have done a tremendous amount for us and one of those is Make-A-Wish. They are outstanding and I will forever hold what they have done for Amelia close to my heart.

The 1st thing Millie did when she got to the party was meet Belle.

Anxiously waiting for her makeup to get done.

After she was all done up Amelia was formally introduced into the party. She got to walk down the red carpet and she had glitter sprinkled in her hair. When Millie got home and was telling Brady about the party she said, "Dad they pronounced me by my name and then I got to walk down the red carpet all by myself. At first I was scared and nervous, but when I was done it was so fun I wanted to do it again".

Millie knows her Grandma Jager LOVES a good tea party so she invited her to be her guest.

Dancing with the Prince

There were the most amazing high school students there hosting the party. They were all so sweet with the kids. Millie made a new friend named Clair, she was amazing and made Amelia feel incredibly special.

Clair and Millie with the whole group.

I wish you could see Millie better in this picture. She is so cute! She has her sweet, little hands up to her mouth giggling. Love Her.

Even Austin, our little prince, got to come.

Clinic March 2011

2011-03-05T12:29:00.000-08:00

A month comes around so fast. I can't believe it was time for Millie to head back to the hospital again. This was a new round so Millie had to get a Lumbar Puncture. We all hate when it's Lumbar Puncture time. The Methotrexate they inject into her spinal fluid has horrible side effects, but it doesn't matter because the poison is keeping her cancer away. I have to try really hard when I leave her back there by herself not to let words like brain damage consume my mind and focus on the positive while I wait for her to wake up from anesthesia.

Millie getting her measurements and vitals done with Pam

I don't have very many shots of Millie with her PORT accessed so I wanted to post this, I will have to get a better picture next time.

Millie plays up until the very last second when she's out cold. In the picture with her is the Anesthesiologist, and sitting in the chair is her Oncologist, Doctor Barnette. We Love Him.

Millie was really sick this time after chemo. She threw up the second we got home. It breaks my heart to see her this way, but I am so proud of her. You can tell in her hair pictures that she wasn't feeling super hot.

Clinic Stats:

Height: 107.2 cm

Weight: 17.3 kg

ANC: 1000

(Amelia's ANC is right where they like it so her home chemo dose stayed the same. I am so glad they didn't up it!)

Millie did awesome at clinic and waking up from her anesthesia. I'm proud of you baby girl!

Come Walk

2011-03-02T14:10:00.000-08:00

Join us along with our SILLY MILLIE in our efforts to support CureSearch for

Children's Cancer Research!

We are so excited that CureSearch is holding their 1st annual 5k walk in Utah this year. We LOVE CureSearch and our family supports them in their effects 100%. Our government is failing our children when it comes to funding childhood cancer research and CureSearch has stepped in to help fill the void.

I have pledged to walk this 5k with my family and friends and I am hoping you will join us at the race and in raising money for this devastating disease. It only costs $10 for people over the age of 15 to walk, under that are FREE!

We will be participating in the CureSearch for Children’s Cancer in Salt Lake City, UT to take place on July 9, 2011 in Liberty Park. The money we raise will fund and support collaborative research to find a cure for all cancers affecting children. I need your support, so please join my team, register as an individual or make a donation to CureSearch for Children’s Cancer on AMELIA'S behalf. Together, we will Reach the Day when every child with cancer is guaranteed a cure.

We Love You All and Are Grateful For Your Continued Support

To Join Team Amelia go here:

http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=452894&lis=1&kntae452894=B6630F27D4934EEF9686E8527E1965BF&team=4089191

Austin is 18 Months!

2011-03-01T15:57:00.000-08:00

CRAZY MAN!

I could not get him to let me take his picture. He was seriously being a pain, but that's just Austin. That boy is already his own man and you don't tell him what to do.

Let me tell you a little about him:

He LOVES his daddy and cries every morning when Brady leaves for work and when he hears the car pull up at night he runs to the door and cries again until he's in his daddy's arms.
His sister can always make him giggle, but they fight over everything.
He has a seriously good pout face.
He finally got some teeth at 16 months! He has 2 bottom and his front teeth, with more showing signs of popping in.
Once he decided to walk he has been a mad man. He has been able to walk since he was around 1, but Austin does what Austin wants and he wasn't about to walk on a regular basis until he decided he wanted to.
We have to lock the front door because he LOVES to be outside and he also LOVES to run straight for the road.
He is talking a lot more. He says, ball, dad, mam, bottle, kittie, 1 2 3, hi, bye, ni-night, meow, shoe, outside, boo, ouch, and NO!
He likes to dance with Millie, which is him stamping his feet really fast.
He jabbers all day long and thinks he's making sense.
His baby blues sparkle when he's happy and when he's being mischievous.
He refuses to keep his socks on.
Changing is diaper is like wrestling an alligator.
He can charm the socks off anyone.
He will not sit down to do anything longer then about 3 minutes.
He takes things out of the cupboards all day long. His favorites are Tupperware, rags, and my pans.
Lids are the one thing that may keep him busy for a second. He likes to take them on and off.
He always checks to make sure I'm watching him before he does anything "cute."
He likes to poke people with a stick or something like that and in a high pitched voice say, "boop."
He takes things out of the garbage can all the time, it's SICK.
He puts anybody's shoes on his hands and thinks he's really funny.
He is very curious and I love to watch his facial expression when he's checking something new out.
When he sees an animal he opens his mouth really big and gets extremely excited.

Austin is giving me a run for my money, but man do I love that little guy!

It's almost done!

2011-02-25T14:56:00.000-08:00

The staining process has begun....

I should have it tomorrow or Sunday. CAN'T WAIT!

Get ready to be jealous ;)

2011-02-15T12:13:00.000-08:00

I saw this bed here and I LOVED it.

The only thing I didn't love was the price, $2,095 + $225 shipping, YIKES!

Good thing I have the best dad EVER! He turned a pile of wood into a work of art.

He is staining it soon and I can't wait to see the final project! I'll be sure to post a picture when it's done.

THANKS DAD! YOU ARE ONE TALENTED MAN!

February 2011 Clinic

2011-02-09T08:24:00.000-08:00

I have been trying to write about Millie's clinic since last Thursday when I took her but Austin has been sick, I had art class, Millie is a mad lady on her steroids so I can't get anything done, and the list goes on.

Anyway, things went well. I have had a lot of concerns about Millie being so pale and tired all the time but her blood counts came back looking good. Her ANC was actually a little high so they have upped her dosage to 75% and we will check her blood again in 2 weeks. I wish we could get her dang dosage figured out. My brain is going crazy trying to keep track of what pills she takes when and how many. I am relieved they aren't waiting until our next clinic appointment in a month to find out what counts are again. I hate waiting to find out how she is responding to a new dose. She bounces around so much it's hard to know if she's safe to be taken around other people or not.

Millie's doc thinks that one of the reasons she is having a hard time during Maintenance is because her little body is just plain worn out from fighting. She did so well during her 1st 6 months of intense chemo and because of it, she is having a hard time fighting now. She is still doing well, she will probably just be tired and pale for the next year. I still have my concerns, but for now the doctors aren't worried so I will try not to be either. Easier said then Done.

On a side note, when I put Millie to bed last night she prayed for her usually things; President Obama, That we can sleep good, etc. Then she says, "And please bless that no one will escape from Jail"... not sure where that came from. After I told her that was a great prayer she said, "Oh mom, I forgot I had something really cute I wanted to say". So she continued with her prayer, "Also bless that no one else will get Leukemia and that the kids who have to be in wheel chairs because their legs hurt from cancer will feel better soon, but I'm happy they're in the hospital having fun". I love her and I love her sweet spirit. I also love that she thinks the hospital is FUN. I am so grateful she associates it with crafts and projects instead of the needles and illness.

As for her hair growth...

Clinic Stats:

Height: 106 cm

Weight: 17.1 kg

ANC: 2400

Orange Week and Other Info

2011-02-02T07:47:00.000-08:00

I have a few things I wanted to share with you. 1st of all February 1st-6th is Leukemia Awareness Week on facebook. It would really mean a lot if you changed your profile picture to Orange and ask others to do the same. It may seem like it couldn't accomplish much, but it can. Awareness is extremely important.

I also wanted to pass on this article to you that I just finished reading (it's at the bottom of the blog post). I do not know what caused Amelia's cancer, but I have always leaned towards thinking it had to do with all the chemicals that surround us daily. Please take 5 minutes to read this article. The more information we can gather, the more powerful we become.
Rise in Childhood Cancers Parallels Toxic Chemical Proliferation http://www.ens-newswire.com/ens/jan2011/2011-01-26-01.html

When we started this battle and we were told it was going to be a 2 1/2 year process we were devastated. We were however told that after the 1st 6 months Amelia's chemo would get easier and in a way it has, but we are all worn out. We still fight cancer on a daily basis and it has taken it's toll on all of us, but especially Millie. We live on the edge of what if she relapses and I am haunted by the possibility of the side effects she could still endure from her chemotherapy. Side effects like, getting another form of cancer, not being able to have children, mild brain damage from poisons being injected straight into her spine, liver damage (if you have had cancer you do not qualify for a transplant), leg pain, migraines, night terrors, there are too many to list. I pray that these concerns will not become her reality, but it is a fear, a fear WE FACE EVERY TIME SHE PUTS A NEW DRUG INTO HER LITTLE BODY (which is DAILY).

Please be an advocate against childhood cancer. You are our family and friends, you are her family and friends. Please speak out! I am trying my hardest to help others become aware of facts like only 8% of donation to the Leukemia Lymphoma Society go towards childhood Leukemia research and if you don't even know that then I have done something wrong. I know that ALL research is needed for every different kind of cancer, but Amelia is a child and it's what I have to be passionate about. 8% is not enough. Leukemia is the #1 children cancer.

I would love to ask you to please volunteer for something every now and then. There are so many options! Maybe it's Hopekids or Make A Wish, you could help with the walk CureSearch will be hosting in Salt Lake (it's not yet listed on they website, but I will have the info soon. Email me if you're interested), if you can't do that then please "LIKE" People Against Childhood Cancer (PAC2), or "LIKE" Cookies For Cancer and maybe order some for Valentines (the woman who started this lost her son Liam last week at 6 years old. He has been fighting since he was 2), change your facebook picture to orange, "Like" Crochet for Cancer and possible purchase a headband (Amelia has 3 and loves them).

Of course I don't expect you to do EVERYTHING, but some support would be more then appreciated. There are tiny little things you can do and THANK YOU SO MUCH to those of you that have already helped in anyway, including "liking" the pages I suggested. If you don't have the time to volunteer or you can't donate, that's fine and understandable, but there are other ways to help.

Do you know that GOLD is the color of childhood cancer?

Do you know that Leukemia is ORANGE?

Did you know that September is Nation Childhood Cancer Awareness Month? Read the Proclamation from our President here: http://bradyandamanda.blogspot.com/2010/09/proclamation.html

Have you donated blood? Click on the link to read where to go http://bradyandamanda.blogspot.com/2010/12/free-for-you-worth-everything-to-them.html

Have you registered on the Bone Marrow Registry? Click on the link to read how http://bradyandamanda.blogspot.com/2010/12/free-for-you-worth-everything-to-them.html

Of course I know everyone is busy but it only takes about 15 mins to sign up on the registry and it takes about 45 mins to donate blood. These things really do save lives.

Another easy thing to do is sign up to be an advocate on http://www.curesearch.org/. It will direct you to the contact info for our representatives. When you are an advocate with CureSearch they send out an e-mail when bills come up where they need us to put the pressure on locally. Last January one of the cancer moms got to sit face to face with Senator Bob Bennett and Congressman Bishop to tell them about Utah kids with cancer and ask them to help.

I am asking all of you to please be more aware and to spread the awareness. Thank you so much for everything you do for us. We never could have survived this past year without your support, love, and prayers. Now we have about 1 more year to go. We also realize we are not the only ones going through a trail. Please let us know if there is anything you need. We love you all and would be nowhere without support from family and friends.

Love,
Brady and Amanda

If you need to get any of the other websites they are listed on the sidebar of our blog.

Trouble

2011-02-01T15:23:00.000-08:00

2011-01-12T19:54:00.000-08:00

People Against Childhood Cancer (PAC2) is an advocacy group that does not raise money and has no agenda other than trying to unite all of the voices that are screaming out about childhood cancer. There are many different kinds of pediatric cancer and within each type there are varying groups and within each group there are countless foundations raising money and people working to advocate for their cause.

What PAC2 is trying to do is foster collaboration so that everyone can work together and be more effective. Check out their WEBSITE and join their FACEBOOK page if you'd like to help unite with one voice.

PLEASE go to PAC2 and read THIS in its entirety so you can get an idea of how powerful the rational use of facts can be and why ONE VOICE can help break down walls more effectively than trying to do so as individuals or in small groups. There is strength in numbers so I ask you to join the effort and to add your voice to PAC2.

It is VERY important to know where your money is going, so please take the time to look at the article. Here is the link one more time: http://curechildhoodcancer.ning.com/forum/topics/so-where-does-the-money-go

Clinic January 2011

2011-01-10T21:13:00.000-08:00

Can I just say how HAPPY I was to write "2011". I am not a big New Year person, but the start of a new year means we are closer to 2012 and we are so close to being a year out to saying GOOD RIDDANCE to cancer. I know I am very ahead of myself but I seriously can't wait till February. Then we can count down the months.

Amelia's clinic went well. I love it when we only get Vincristine. It makes everything run so much smoother. Millie's appointment was actually last Thursday and she just finished up her round of Dexomethosone (rotten steroids) last night. Her little system does not handle them very well. She is always so emotional. I swear she feels like the world is out to get her. I love my bug and it's so hard to see her that way. It's difficult to know how to handle it as well. It's hard to watch her mope around and have nothing cheer her up.

She has been extra tired too. I'm starting to feel like I'm a little obsessive with getting blood counts, but I hate waiting a month to know what's going on with her. I know she needed a blood transfusion this go round, but there is nothing I can really do about it. The pictures I took of her are from Sunday and you can tell that she is run down. Her preschool teacher on Monday and her gymnastics coach today both told me they think she looks pale and that she was very tired the whole time. She is such a trooper though and she begs me to go to classes. We have been so careful since she had the flu and I'm not letting her play with other kids very much. She hates it so the last thing I want to do is make her miss classes as well. I never know what's right, I can just go with my gut and hope for the best.

I apologize for the tangent.

Millie putting on a smile even though she was near tears. I'm sorry, but I think she looks awful. Her little pale face and dark circles brings me near tears too.

I've decided to add a couple new shots every month of her hair growth so you can see the back as well.

Clinic Stats:

Height: 105.1 cm

Weight: 16.7 kg (about 37 pounds)

ANC: 900

SUPER SKYLER IS GOING HOME!

2011-01-07T15:46:00.001-08:00

Christmas Magic

2011-01-05T07:17:00.000-08:00

side note: I hate blogger today. I have been trying to upload videos and it's not working. Every time I edit, my spacing it changed, it won't safe my spelling corrections either. I am so sick of fixing things that I am just going to leave it as is. Hope if flows and makes sense.)

We didn't make it to any Christmas parties this year. Millie was too high risk wish her ANC being low and sickness being everywhere. We didn't want to chance a hospital stay. She did however get to go to her Christmas program!

Can I just tell you that Amelia is the dang cutest, funniest, smartest, girl around and I just want to squish her perfectly round cheeks every time I see them. I know I'm a little odd, but it's the truth! She was a star in her program. I couldn't stop smiling. I really am one proud mama.

It was during her Christmas program last year that we realized how drastically different Amelia looked from the other kids and that was the day of her 1st blood test. So it was a huge day for all of us! I was emotional to begin with and then when I walked in and saw Mrs. Patti wearing her Gold Childhood Cancer Awareness Ribbon I about lost it. We are so grateful to Patti. She kept her preschool a safe and clean environment for Millie. I always knew that if I sent Millie to school she would be loved and taken care of. I will forever be grateful for that.

Patti made scarves for all the kids. Millie LOVES hers because it's from Mrs Patti, it's all the colors, and because it's so very soft.

Help Them Grow Old, Wear GOLD

The kids all had a part in reciting, "The Night Before Christmas". They were so cute! Miss Millie had her lines memorized in one try. She's amazing. It was a fabulous Day!

Millie had been so sick and it made it very difficult to see Santa. We finally braved the crowds on December 23rd. Millie was freaking out about getting her list to Santa. Thankfully they let us cut the line and Millie wore her mask while we were there. She only took is off long enough to tell The Big Man what she wanted.

Millie showing him her list;

Flexies

Snow White Barbie

Unicorn Stick Horse

Hungry Hungry Hippos

Tangled Leapster Game

We threw Austin on his lap the last second and he did GREAT. There was no crying, he just kept staring at him.

Christmas Eve was perfect. Because we knew that things were about to get crazy busy we decided to give our main present to the kids and they could give theirs to us.

Millie LOVES to watch He-man and She-ra. They come on really late so Brady records them for her to watch in the mornings and on nights when she can't sleep it's the only thing that makes her happy. She originally asked Santa for some action figures, but I didn't think we could find any so I talked her out of it. I was excited to find She-ra and Bow at a local antique store, sadly there was no He-Man, so I'll be on the look out. She was so happy! It was her favorite gift. Don't mind if I pat myself on the back for that one.

Austin was so happy to FINALLY be able to open the presents. It had been a long few weeks keeping him away.

After we opened our gifts we headed to the Flamms for Christmas Eve dinner and a gift exchange. We had a beautiful dinner and a wonderful night. Brady and I were very spoiled which was fun too. Brady's main gift was a bike trainer so he can rehab his knee and I got a Wii! There are so many people at the Flamms and it's a little crazy, just like Christmas should be, but I didn't many pictures :(

CHRISTMAS MORNING!

Santa came, the kids opened presents, we ate sticky buns and then headed to my parents house. It was a perfect day.

Kaylee, Brianna, Millie (Millie's aunt Shelly made the darling skirt she's wearing. she's amazing!)

Millie gave her aunts a Gold Ribbon Magnet for their cars and a key chain to go with it

Millie and I showing off the peals Brady gave us.

My favorite gift was a marble roller that my daddy made. There is nothing better then home made gifts and this one is particularly special to me. I remember playing with one when a was a little girl at my Great Grandma Phoebe's house. It's always the 1st thing the kids go to at my parents. They all love it and now we have our own! I know it is something that will be passed down from generation to generation. Thank you dad. Love you!

We had the most amazing Christmas. I am so grateful to have been able to keep Millie out of the hospital and to have shared the holiday with our whole family. It truly bring into perspective what this season it really about. We also were on the receiving end of some Christmas surprises. One of those being a GIANT box full of the cutest clothes from The Matilda Jane Clothing Company. The Utah trunk keeper, Ashlee, wrote in about our family and because of her sweet note we were one of the many who got a wonderful gift from them. I have always loved their clothing but now I hold them dear to my heart. Not just because of what they did for Millie, but because I know they sent out around 250 other packages just like ours to other kids in need. They are amazing! Thank you so much Ashlee for referring us for their Spread The Love program and thank you Matilda Jane. We can't wait to see the new Spring Line!

We also had a secret Santa. I have never had a secret Santa before and it was truly magical. We never did find out who it was, but it was something the whole family looked forward to every night. Millie had been quarantined a couple days during that time and it really gave her something to look forward to. Thank you to whoever you are. I can not tell you how much it meant to us. Everything you did was so sweet and thoughtful. P.S., we made smores in our fireplace just the other night! YUM!

Thank you everyone for your generosity.

I hope you had a Merry Christmas!

What's been going on with Millie

2011-01-03T14:46:00.000-08:00

December 16 Millie woke up with a high fever. Fevers with cancer are never good. You automatically have to go to the hospital. I was grateful that this time it was during the day and we avoided the ER. They told me when we were still home to go ahead and give her Tylenol and to bring her in. When we got to clinic her temp was still 102.7. We never could get it lower then 101.

They checked all her vitals and gave her an antibiotic push. Her blood counts had dropped quite a bit since the last time she was in, but they decided to keep her on her chemo for now.

Once we got home and finally got to bed Millie took her normal Thursday night dose of chemo. She can pop all those babies at once, a trait I never thought she'd have. She also likes to take her meds without water, but I refuse to let her. I could just see her choking on them or something. It's a strange thing to watch your child take so many pills at one time and know that she is putting poison into her own body.

Day 2, Friday December 17, Also known as D DAY. I had posted a prewritten blog early in the morning about Millie's D Day on the 17th, but we didn't get to celebrate the way be were hoping.

Instead Millie's fever came back and we were once again at the hospital. YUCK! It was a very long day of tests and decision making. Dr. Lemon suggested a few different options for Millie. 1st they gave her Tylenol to get her temperature down, 2nd he started her on another dose of antibiotic, that took about a half hour to push. 3rd, they took her off all chemo.

After waiting for the drugs to kick in they retested her temp and it was still way up and her Absolute Neutrophil Count (ANC) once again dropped. It was now 500. NOT GOOD! If it continued to drop and Millie's fever hung around we would definitely be in the hospital for Christmas.

Now what, well Dr Lemon suggested we give Millie a shot that would up her white blood cell count and help her fight off whatever was going on in her little body. This was a really hard decision for me to make because I have heard mixed things from the other cancer moms about the shot. Some feel that it artificially ups the counts and then they tend to drop even lower once it wears off.

Dr. Lemon also wanted to swab her nose to see if we could figure out what was causing her fevers. Again, I have heard mixed reviews about doing this. In the end we decided we would do everything possible to keep Millie out of the hospital for Christmas and go with what Dr. Lemon was recommending since he was pretty insistent about it.

I was very grateful that two of our Cancer Fighting Cuties moms where there and were able to help me with my decision. Sometimes it's hard to know what's best to do, especially when these little ones are going through so much already. I never want to make Amelia get an extra something done if it isn't absolutely necessary.

Our Cancer Cutie Friends

Chelsea and Cami (Millie and Cami had on the same cute outfit from Matilda Jane, we love them)

Since Millie was sick she wasn't able to see her friends, but I was so grateful for their support. Love you guys.

Chase and Dani ( They live in St. George and have to make a 5 hour drive every time they come get chemo, YUCK.)

Millie trying her very best to hold still while her nose got swabbed. She is so good at doing what the nurses and doctors say. I am so proud of my brave baby girl.

Her daddy got there just in time for her shot. She sat on his lap and wrapped her little legs around him. I was so glad he was there to support her. She was begging for her daddy.

She had a few tears, but was happy playing again in no time. Love her!

I have to admit that I was feeling a little sorry for myself that the day wasn't going the way it was suppose to. We were all disappointment we weren't able to take Millie out to celebrate her year diagnosis but we got an AWESOME surprise that made the day!

C.R. from The HopeKids Foundation found out about Millie being in the hospital and he made arrangements for us to get FREE take out from THE OLIVE GARDEN. Our day had been saved. We are so thankful for HopeKids and everything they do for our family. We are also grateful to the downtown Olive Garden for making Miss Millie's day special. She would seriously eat there every day and she couldn't have been happier. She even made our house look like a restaurant and we drank out of "fancy" glasses. She did cheers throughout our whole dinner. It was so sweet! Cheers to HopeKids, Cheers to kids with cancer, Cheers to Olive Garden, Cheers to herself, and Cheers to C.R.

On a side note: Millie's test came back and she had the flu, which is annoying since she got the flu shot. They put her on Tami Flu and her fever did not come back, Phew. Her counts were retested and they were still low so they continued to keep her off chemo for the next week. She ended up being off for 10 days. They finally upped her to a 1/2 dose last Monday and she will get checked again Thursday when she goes in for her monthly chemo.

Millie's Curls

2010-12-27T14:15:00.001-08:00

Do you believe in Miracles? I do!

2010-12-23T09:16:00.000-08:00

Read Crystal's post today about her Super Skyler

http://www.crystalandskyler.blogspot.com/

and

PLEASE continue Praying.

Diagnosis Day

2010-12-16T17:51:00.000-08:00

Today, December 17 is Amelia's D DAY, it's a day that we will never forget. It's a day we can choose to celebrate or it's a day we can choose to mourn.

We choose to CELEBRATE!

December 17, 2009 is the day that our beautiful daughter was able to take her life back. A lot had to change in order to do so, but we are so grateful for her cure, we are grateful for the lessons we have learned, we are grateful for a Savior that understands her pain and suffering, we are grateful for prayer and the power it has, we are grateful for other little ones that have done medical trails and turned Leukemia, a death sentence, into a 95% cure rate. We are grateful for family, for friends, for doctors, and nurses. We are grateful to be where we are in life and for your support.

I want to say THANK YOU to all of you that have followed our story. It's amazing how much we have been able to feel your prayers and love. I know that Amelia has done so well with her on going treatments because of the people from across the world praying for her. Amelia will continue her chemotherapy for another 14 months or so, and I hope you continue to stay with us and support our daughter in her fight to conquer cancer.

I originally intended to do a post with a bunch of pictures and stories from the past year, but I am just too tired. We were at the hospital all morning yesterday and we are on our way there again this morning. She has to get more antibiotics and some fluids. Her fever doesn't seem to want to go away. I'm super bummed! This is NOT the way I intended to spend the day, but when you have cancer you have to go immediately to clinic or the dreaded ER if it's after hours, just in cause of an infection. Instead of posting a bunch of individual pictures from Amelia's year I thought I would blog some of the old collages Brady and I have made instead.

Miss Millie before cancer took over her little body; September 28, 2009 (her 4th birthday)

December 17, 2009 (around 3 months later) the day I took her in for a blood test. It was very obvious that something wasn't right, just by looking at her. I hate that she got this bad.

Just a handful of pictures from our 1st week in the hospital.

Month 1 - Steroids take over our daughter physically and emotionally.

This one is from her 4th birthday before she was diagnosed through her 5th birthday.

September 28, 09-September 28, 10 MILLIE'S MAIL (thank you!!!)

Diagnosis Day to Today

December 17, 09- December 17, 10

Today we have a HAPPY, "HEALTHY", STUNNING little 5 year old.

Clinic Day December 2010

2010-12-10T15:55:00.000-08:00

Today was a "starving day" as we call it. This means that Millie went under anesthesia to receive a Lumbar Puncture and she wasn't allowed to eat or drink anything. They inject a drug called Methotrexate into her spinal fluid while she is under. Thankfully she only has to do this every 3 months now that we are in her maintenance stage of treatment.

Before heading down to the Rapid Treatment Unit (RTU) for her procedure we had to check in at clinic; height, weight, blood pressure, chemotherapy in her PORT, a script of steroids, and of course CRAFTS WITH PAT!

Millie getting her blood pressure. She looks so little sitting there.

Her Christmas ornament she worked on while waiting for her Vincristine to arrive from the pharmacy.

She also got a surprise visit from "Ben". He is such a sweet dog.

This picture is ironic to me. Millie is playing like everything is great while her nurse pushes poisons into her central line. I am so grateful I don't have to fight her very often when it comes to getting her PORT accessed and her chemo push, but at the same time I hate that this is routine and normal to her.
After her 1st dose of chemo and on our way to the RTU we ran into one of Amelia's cancer buddies, Cami. She was headed up to start her second round of her most difficult chemo. They are just weeks away from maintenance. HOORAY for the Carver Family! You're almost there!
They were really behind down in the RTU so the Child Life Specialist came in and made a doll with Miss. Millie. She was so cute with her "Millie Doll". If you look really close you can see that she drew rainbows for her eyes. I love my creative little bug.
Listening to her heart.

Millie played with her doll up until her "sleepy time stuff" kicked in and she was out cold.

I hate seeing her that way, just laying there. It breaks my heart.

I snapped these pictures as I was leaving. They don't let us stay to watch the spinal tap.

When I came out I had a nice surprise...BRADY! He didn't get to come with me today because he had his 1st physical therapy appointment after her knee surgery. I was so happy to see him! You never know what Millie you are going to get when she wakes up from anesthesia and it's good to have someone there for moral support.

She woke up scared and confused. She kept saying, "I want my mommy," over and over again.

Even when Millie is upset or scared she does what she has too. She always has. I am so proud of her bravery. Amelia amazes me every day.

Clinic Stats:

Height: 104.7 cm

Weight: 16.7 kg

(about 37 pounds)

ANC: 900

Because she started a new 3 month round of chemo and she has gotten taller and gained some weight they have upped her chemo dose. As long as her ANC stays in between 500-1000 they will continue to up it every 3 months at the start of each new round.

Magnum Energy

2010-12-08T21:20:00.000-08:00

I work for a company called Magnum Energy. We were on the local news today.

Click here to watch the video: http://www.ksl.com/?nid=148&sid=13580725

Today

2010-12-08T18:59:00.000-08:00

Today I'm tired. Today I dislike the world. Today I saw 4 different cars flip-off other cars, gratefully not me. Today my sister saved me by taking Austin and Amelia. Today I cried. Today I sent Amelia to see the Nutcracker for her 1st time without me because I couldn't face it - I missed this memory. Today Brady had his doctor's appointment and his knee is healing well from surgery. Today my head is throbbing. Today I cried. Today I heard horrible stories about what's going on in other people's lives, people I know, people I care about, and I felt guilty for feeling sorry for myself when so many others suffer. Today I painted. Today I cried. Today I am scared for my daughter who starts a new round of Maintenance chemotherapy tomorrow - Methotrexate will be injected into her spinal fluid in an effort to keep her cancer away. Today I worry about the side effects like brain damage. Today and EVERY day I am grateful she is alive. Today I cried.

Free For You, Worth Everything to Them

2010-12-07T15:50:00.000-08:00

This Christmas, here's two relatively simple, FREE gifts you can give your fellow man:

1. Get registered in the bone marrow donor registry: http://www.marrow.org/JOIN/. There are many people who need a life-saving bone marrow transplant, but who don't have a match. Last month we heard about this sad story - an 11 year old girl with AML (leukemia), who passed away. She needed a bone marrow transplant and a perfect match couldn't be found. YOU could be someones match. It takes about five minutes to get signed up. Get registered and give someone hope! Our friend Rachel was able to find a donor, can you imagine if she was saved because of YOUR marrow? What an amazing gift for everyone involved!

2. Donate blood at your local Red Cross you can also go HERE if you're not sure where that is. You can donate blood or platelets at American Red Cross. A single platelet donation can provide enough platelets for a full therapeutic dose for a patient in need. In fact, some platelet donations yield enough platelets for two or three therapeutic doses. By contrast, it takes about five whole blood donations to produce a single therapeutic dose. Many patients who need platelets are undergoing chemotherapy or organ transplant and have weakened immune systems. A platelet dose from a single donor reduces the patient’s exposure to multiple donors and is therefore preferred by many physicians. During a platelet donation, a small portion of your blood (less than one pint at a time), is drawn from your arm and passed through a sophisticated cell-separating machine. The machine collects the platelets and safely returns the remaining blood components, along with some saline, back to you. After the donation you can resume your normal activities, avoiding heavy lifting or strenuous exercise that day.

According to the American Red Cross: every two seconds, someone in the US needs blood. Before Amelia was diagnosed, I never could believe that number. I had no idea. But after going on this cancer journey with Amelia and sitting in clinic watching blood transfusion after blood transfusion going on around us, that number is much more real to me now. Amelia had 3 just in her 1st 2 days of treatment. We have a friend Elena who has had multiple transfusions in just one week - and occasionally, her transfusion has been delayed because the blood bank didn't have the type of blood she needed. Or there's our cancer friend, Skyler, who has multiple platelet transfusions every day. And there's millions of other cases where people need blood. It is life-saving. And it can be really scary watching your sick child and being told that there isn't the blood they need available.

Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross
•One donation can save the lives of up to three people.
•The demand for blood transfusions is growing faster than donations.
•Shortages of all blood types usually occur during the summer and winter holidays.
•Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!)
•It is possible to donate specifically only platelets or plasma. This process is called apherisis.
•Donated platelets must be used within 5 days of collection - new donations are constantly needed.
•Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks.
•The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation.
•The average red blood cell transfusion is approximately 3 pints.
•A healthy donor may donate red blood cells every 56 days.
•A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year.

You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)

Please, if you possibly can, get out and donate this holiday season. It's one of the best gifts you can give.

This Christmas, GIVE LIFE!

**feel free to copy and paste this post onto your blog (I DID via- The Prince Family) - spread the word!

Phone Pictures

2010-11-29T13:24:00.000-08:00

I got a new phone so Cousin Sherry just uploaded all my old pictures to our computer. I thought it would be fun to post some of them. They are really out of order but I didn't want to fuss with it.

Austin at Primary Children's Hospital waiting to be taken back for his double hernia surgery.

(the silly outfit was the hospitals. I promise I won't put my son in Kitty jammies ;) )

Millie and Grandma Jager wasting time at our November Clinic appointment.
This is a picture of Austin at the Spaghetti Factory a couple months ago. He loves to put straws in his mouth and blow air through them. He thinks it's hilarious.

Austin in the Spring of 2010. I love it when he makes this face.

Amelia on December 17, 2009 in the ER at Primary Children's Hospital. We had just been sent up from my doctor's office with Millie's blood tests. We basically knew she had cancer at this point but they were doing more blood tests. The heat packs on her arms helped prep her veins. We knew she was really sick by looking at her, we just had no idea how sick.

Brady and I at the 1st U of U game of the 2010 session.

Austin in the Intensive Care Unit at Intermountain Hospital

Me waiting for them to start my C-Section

Austin in the summer. He loves to swing.

Miss. Amelia giving her famous thumbs up. Summer 09

Austin and His Daddy

Grandma Jager and Amelia at the doctor after slamming her finger in the door. She had to have a hole burned into her nail to let the pressure out. March 09' Austin in his BIG boy carseat for the 1st time. He was so HAPPY!

Summer 09'

Fall 09'

Brady would take Millie to see High School Football games when Austin was in the NICU. It was a fun way for Millie to get some much needed 1 on 1 time since we were gone so much. She LOVED watching the cheerleaders and hanging out with her dad. Fall 09'

Not sure when this was taken, but it looks like she was around 4.

I love that she fell asleep holding her baby.

Clinic November 2010

2010-11-11T14:48:00.000-08:00

(so I wrote this post on November 11, but I kept forgetting to upload the picture, so that's why I'm just posting it now)

It was so nice to walk into clinic today and see lots of familiar faces. There were 3 other families there from our Facebook support group, and although I wish we knew each other for a different reason then we do, it's still a wonderful comfort. Sadly I left my camera in the car or I would have LOVED to get a picture with all our Cancer Fighting Cuties.

My mom came with me today (THANK HEAVENS!). It's always nice to have an extra pair of hands to wrestle the Austin Monster, and some one for me to chat with while we play the waiting game. Luckily we were on what they call the "fast track" and we were out of there in 2 1/2 hours, yep, that's FAST for clinic. Our other buddies were there for more like 8. :(

Everything went well. Millie's blood counts are all good which was nice to hear since she is on the full dose of oral chemo right now. I thought she was looking pale, and I still do, but a blood test doesn't lie.

Today was just like every other clinic day; height measured, weight check, blood pressure taken, and then a lot of waiting and meeting with a nurse and 2 different doctors. Millie was a champ when they accessed her PORT and administered her Vincristine. I am so proud of her!

Clinic Stats:

Height: 104 cm

Weight: 16.2 kg

ANC: 2000

Everything else was written on November 11, but now I'm writing tonight

I mentioned before that Millie has been pale. She still is and along with that she is incredibly tired. She takes a nap almost every day and this afternoon she slept for 4 HOURS! I'm worried about her. She's not sick, she doesn't seem to be getting sick, her counts are actually on the high side, so what is going on? Someone on our support page wrote that our medical innocence is gone and it's so true. My head no longer goes to she's probably growing, or maybe catching a cold, my mind wonders off to the worst possible scenario...her cancer is coming back.

The chances of that happening during Maintenance chemo is incredibly low, and I'm sure that's not what it is, but I HATE that that's where my brain goes. I don't know if I could handle it. I really don't. I probably sound a little like a mad woman at the moment but these fears are my reality and it's not fair.

Her next appointment is December 9th and in a way I'm actually looking forward to it. As much as I HATE chemo and HATE what it does to my baby girl and HATE what it could do to my baby girl over her life, I am grateful for it at the same time.

Chemo is saving her.

A Little Break

2010-11-10T21:39:00.000-08:00

Before I talk about our St. George trip, which was soooooo needed, I want to tell you about our new DISNEY WORLD JAR. We had so much fun when Make A Wish sent us to Disney World that we decided we want to take Millie back when she finishes her last round of chemo. Ya I know that's not until 2012, but I love having something WONDERFUL to look forward to. At the end of all this Millie will deserve another dream vacation and we will all want to CELEBRATE!

As a family we went to the craft store, bought the perfect jar, found some sparkly princess stickers, and got to work on our new project. Every time Millie puts a new coin in the jar her whole face lights up!

ST. GEORGE was awesome.

There is just something relaxing about being somewhere different. We went down with some of our cancer friends. It is so nice to have someone to chat with that understand what you're feeling, and what your child is feeling. We also finally got to meet another cancer family that we only know through their blog, the Prince Family. They really were so nice! They let us crash at their house all day Saturday while the guys watched the U game.

Thank you so much. I really don't know how you do everything you do. I can't imagine making the 4+ hour drive from St. George to Primary Children's Hospital, Especially with a new born, a 5 year old, and a 2 year old on chemo. You are amazing Dani!

The Little Guys

Austin, Chase (cancer friend from St. George), Caden

The Little Girls
Cami (cancer friend), Abby (Chase's Big Sis), Millie

They are all 5!

We also got to squeeze some swimming in.

Before we headed home on Sunday we let the kids get some wiggles out at the park.

Love them!

It was a short trip, but I'm so glad we went.

To see more pictures you can check out both Cami and Chase's blogs.

Congrats Brinley

2010-11-09T19:32:00.000-08:00

Sweet little Brinley is finished with her treatment!!! WE ARE SO EXCITED FOR HER. Go to her blog to check out the video of her last day of treatment....beware you may cry, I couldn't get a grip. It also gives you a small idea of what Amelia does when we take her up to clinc.
www.sweetbrinley.com

love.

2010-10-31T19:12:00.000-07:00

Happy Halloween!

2010-10-30T19:12:00.000-07:00

It amazes me how emotional I am when a new holiday rolls around. I am just so grateful to have both my little girl and my little man with us. Austin's official due date was Halloween Day and he hadn't been off his oxygen too long this time last year and well Millie, she's alive. We're blessed.

We did a little Trick or Treating this morning at Nana's, Great Grandma Ellsworth's, and Grandma Jager's house. Millie was so cute! She kept running around yelling, "BATGIRL".

TRICK or TREAT Nana

She got a Halloween Witch Barbie and had it opened the second we were back in the car! But, before we left Millie had to show Nana her Batgirl moves.

They're Fancy!

She finishes every move by yelling, "BATGIRL".

TRICK or TREAT Grandma and Grandpa Jager

We got home and took a little break from candy and costumes to rake leaves, well Brady raked them, Millie and I had more important things to do :)
After Millie and Austin took their naps (Millie usually crashes sometime during the day, the chemo wears her down), we headed out as a family to do a little Trick or Treating in the neighborhood.

Alfred, Batgirl, The Riddler, Batman

HAPPY HALLOWEEN!

A happy song

2010-10-24T20:31:00.001-07:00

Brady was out late the other night with his friends, so me and Millie decided to have a dance party. Our favorite song to jam to is, MILLIE by Jesse Crowley. I have posted about it before, but I love it so much that I thought I would share it again. Jesse wrote this song for Millie at a time in my life that I took 3 hot showers a day just to get away from everything and be alone (our water bill was expensive that month). I was having to give Millie chemo through her accessed PORT and that is something a parent should NEVER have to face and more then I could bare some days. This song brought me so much happiness when I needed it the most and if I am ever getting swallowed up I can pop it in and it makes everything seem insignificant.

Millie is happy, fighting, and winning. There is nothing else.

For your listening enjoyment; Millie's Song

(here are the lyrics if you want to read as you listen)

MILLIE
Close your eyes, think of what you'll be
And everywhere you'll go and what you'll see.
A cowgirl on the range, or an astronaut in space,
Or a mommy with a babe, or all of these.
Millie Millie no matter what you do
We'll be right by your side
To share it all with you.
Millie Millie look around you'll see
Nothing but faith and hope from friends and family.
You're gonna fight fight fight 'till the sun goes down
Fight fight fight for the whole year round
You're gone smile and hope and believe.
What is red if we have no green?
The blue without the orange means nothing.
The shadows violet haze
Cast from the burning golden rays.
How can you pick a favorite one
From all you've seen?
Millie Millie you'll always have a friend
Someone to pick you up and dust you off again.
Millie Millie look around you'll see
Nothing but faith and hope from friends and family.
Chorus
Tilt your head, look up to the sky
And in the starry night you'll see a satellite.
And you can touch it with your eyes,
And you can wish inside your heart,
And it will be your shooting star every night.

words and music by Jesse Crowley

THANKS AGAIN JESSE, THIS IS TRULY PRICELESS

Don't Ask...

2010-10-23T22:33:00.000-07:00

Millie's October 2010 Update

2010-10-19T16:57:00.000-07:00

Millie is one SMART cookie and she knows if 2 parents come to clinic with her then she doesn't get our undivided attention, she prefers to have 1 parent take her. This time it was Brady's turn. That doesn't happen very often so it's always a treat for Millie. She loves her daddy time, even if it's while having poisons injected into her little body.

Brady said everything went really well. Millie was able to make her usual craft with Pat. Pat is a volunteer that seems to always be at clinic! I have started to wonder if she lives at the hospital. ;)

Millie and Pat making bracelets (Millie is showing it in the picture, but it's hard to see)

Clinic Stats:

Height: 104 cm

Weight: 16 kg

ANC: 4200

Millie's ANC made a HUGE jump from last month. It was 700 which is way low and now it's 4200, which is too high. While she is in her Maintenance phase they like to keep her ANC at a safe level for her to be out and about, but it can't be at a "normal" level either. It's a constant balancing act.

We have been having a problem with her chemo since she's been in Maintenance. Her blood counts have always been too low to have the full 100% dose that most cancer children have. She was taken totally off everything back in August when we went on our Make A Wish trip since her ability to fight infections was basically 0%. They have slowly moved her back up, but she hasn't been able to handle more then a 75% dose without her counts dropping. These first few months have been so frustrating. I feel like we just can't get in a groove and once that happens maybe life will start to feel semi normal again.

They have put her back on a full 100% dose and will check her blood counts in 2 weeks to see how she's doing. I hope we get this all figured out soon, Millie just doesn't handle it well and I hate seeing her sick from it. She was up all night throwing up and her legs were really achy. I felt so bad for her and there was nothing I could do. Every time we gave her medicine to help with the nausea or her aches she would throw it right back up. It broke my heart. She was just standing there in the middle of the night covered in vomit and crying about how she hates this. She kept saying, "I hate this mommy, I hate this". The poor thing was so exhausted already from being at the hospital and she just wanted to sleep.

She is doing better now, but Cancer Sucks.

AND NOW

for Millie's hair growth

Isn't she cute!

i LOVE those cheeks, I just want to pinch them!

P.A.R.T.Y.

2010-10-08T22:42:00.000-07:00

Millie FINALLY got to have her Cowgirl Birthday Party! It was SO much fun. We had it at her grandpa Jeff's barn and it couldn't have been more perfect. We decorated farm animal balloons, colored cowboy pictures, had a pinata (Millie thinks it isn't a party without one), had cute horse cupcakes that my mom made, opened presents, and last but not least the kids got play with miniature horses and their little babies.

They were all so adorable. Millie's Nana had gotten brushes for them to comb their hair and my mom brought a ton of ribbon to decorate it with. It was so cute to see all these little horses running around with bows in their mane.

It was a perfect day and worth the wait. Millie couldn't have been happier and I couldn't stop crying tears of joy all day. I am so grateful for a healthy, happy, little girl. I love her.

The Birthday Girl

The 2 Cutest Bald Cowgirls Around

Millie and Cami

Pinata Time

Ellie #1 showing off her handy work. I love all the ribbons, check out the tail.

Nana helping out with the ribbon cutting.

Ellie #2

Cami making sure the mane was smooth and shiny

Mr. Austin

His silly faces make me laugh

Hanging out with Grandpa Jeff

The Whole Gang

Cami Hannah Millie Melody Ellie Ellie Caden Jager Katlyn Tasha Joey

help

2010-10-08T22:15:00.000-07:00

PLEASE PRAY FOR SKYLER.
His mom has asked for extra prayers.
http://crystalandskyler.blogspot.com/

Cancer Moms

2010-10-08T21:38:00.000-07:00

I love all of these women. Some of them I met for the 1st time last night, but it doesn't matter. Our situations have made us soulmates for life. I wish we had met under better circumstances, but I am grateful for your strength, for your love, and courage. You are the bravest women I know. We may be smiling in this picture, but we have seen each other at our very worst and it has only made us stronger. It is moments like last night where I am at the hospital for a good reason that keeps me going and keeps me fighting.

I love you ladies.

(We had another cute mom with us but she had to get back upstairs to be with her daughter before we could get a picture. It was so nice to meet you Marie and I am glad you decided to join us. I love you and I love Rachel. Keep fighting!)

I did not write this, but it's perfect.

I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you, With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day.
We know the names of up to 20 different drugs,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep.

Make up, hair styling, skirts are words of the past.
We have become addicted to texting,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night,
We know we can count on someone to be up.
Then for one of us, the world stops.
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember, I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen, we vent, we cry, we laugh together.
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice,
Sometimes we win, sometimes we lose,
But never are we defeated.
We are not nurses
We are not doctors,
We are cancer moms…

My Little Hero

2010-10-06T14:14:00.000-07:00

HopeKids is a part of Little Heroes and Millie's cute face is in their new video. Check it out and learn more about Little Heros at: http://www.littleheroesfoundation.org/

a FABULOUS week

2010-09-29T12:35:00.000-07:00

This past week has truly been amazing. Friday we went to a BBQ with HopeKids hosted by, Bikers for Christ it was awesome. Millie loved getting her face painted, plus there was delish food! All the bikers were really sweet and they let the kids get on their hogs to take some pictures.
Thank you so much to Bikers for Christ and to HopeKids. It was a wonderful night.

Saurday I was able to attend my mother-in-law's Annual Quilt Show. I am always amazed by all the quilts. If you didn't make it this year, mark it on your calander for next September! It's amazing and all proceeds go to charity!

I only got to stay for a second because we had our LEMONADE STAND! I can not tell you what a neat experience this was for our family. Cyndell and her friends from school made the coolest poster to support all of our Cancer Fighting Friends and the charities that mean so much to Brady and I. It was a beautiful gesture.

Lilly and my mom made darling signs to hang around town and Lindsay and I spent the day before burning our fingers off for our cause; GOLD ribbons. They turned out so cute! We bagged them up with a catchy saying my brilliant mom came up with,

Help Them Grow Old

Wear GOLD!

Our Alex Lemonade Stand raised over $500 for Childhood Cancer Reasearch! I am so grateful to those of you that came out to support us. I can not tell you how much it means to Brady and I. It is an overwhelming feeling to know there are people out there that care as much about finding a cure as we do. To those of you that couldn't make it and supported us online, THANK YOU! You too are amazing and you helped us crush our orignial goal of $100. It is nice to know that we have so many loving people supporting our family.

My favorite part of the day was listening to Jager holler random amounts like 59 cents, or 10.5 cents for the lemonade, and Millie yelling, "lemonade 50 cents, Cancer Fears Me!".

This is a day none of us will ever forget.

Sunday, Millie was in her Primary Program at church and she did a fantastic job. She was the 1st one to go and she knew her line perfectly! We were so proud of her. Sadly I missed the rest of the program because Austin was a nightmare.

Monday, one of our favorite neighbors babysat Austin so we could have a peaceful dinner at CHILI'S. Millie and I both had our GOLD ribbons on and she was so proud to walk in there as a cancer surviver.

To Chili's,

thank you so much for raising funds for St. Jude's Children's Reasearch Hospital and for donating ALL profits on September 27th. We think you ROCK!

Tuesday, MILLIE TURNED 5! When she walked in and saw her new bike her eyes lit up and she gave Brady the BIGGEST squeeze.

She rode for about 3 hours straight

Brady left work early so we could take Millie to a movie, too bad she fell asleep and missed the whole thing. I took this picture to show her bedhead after she woke up. I LOVE it.

EAR PIERCING TIME! We let her wear her PORT numbing cream and it seemed to do the trick. In the calmest voice she said, "Ouch" and that was it.

Showing off her new bling

I love this picture. You can see in hers eyes that she is thinking about her wish.

I wonder what it was...

By the time we got home from dinner at The Olive Garden (her very fav place to eat) it was pretty late so she hurried and opened the rest of her presents, one of those being her new Rock Star wig. She LOVED it. Such a funny little thing.

Amelia LaRee Flamm

2010-09-27T19:47:00.000-07:00

HAPPY 5th BIRTHDAY!

Minutes Old

1 Year Old

2 Years Old

3 Years Old

4 Years Old

almost 5 Years Old

Millie's last year

You have had to grow up a lot this past year Amelia, and I want you to know we love you, and we are proud of you. Amelia, you looked cancer in the eye and it went running the other direction.

CANCER FEARS YOU!

A Proclamation

2010-09-27T14:53:00.000-07:00

A Proclamation by President Barack Obama
Posted on September 16, 2010 16:58
THE WHITE HOUSE

Office of the Press Secretary

For Immediate Release

September 10, 2010

NATIONAL CHILDHOOD CANCER AWARENESS MONTH

- - - - - - -

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION
Each year, thousands of children face the battle against cancer with inspiring hope and incredible bravery. When a child is diagnosed with cancer, an entire family and community are affected. The devotion of parents, grandparents, loved ones,and friends creates a treasured network of support these courageous children. During National Childhood Cancer Awareness Month, we honor the young lives taken too soon and the survivors who face chronic health challenges, we celebrate the progress made in treatment and recovery, and we rededicate ourselves to fighting this disease so all children may have the chance to live a full and healthy life.

While survival rates for many childhood cancers have risen sharply over the past few decades, cancer is still the leading cause of death by disease for young Americans between infancy and age 15. Too many families have been touched by cancer and its consequences, and we must work together to control, and ultimately defeat, this destructive disease. I invite all Americans to visit Cancer.gov for more information and resources about the symptoms, diagnosis, and treatment of childhood cancers.

Tragically, the causes of cancer in children are largely unknown. Until these illnesses can be cured, my Administration will continue to support investments in research and treatment. The National Cancer Institute, the Federal Government's principal agency for cancer research, is supporting national and international studies examining the risk factors and possible causes of childhood cancers.

The health reforms included in the landmark Affordable Care Act advance critical protections for individuals facing cancer. Provisions in the law prohibit insurance companies from limiting or denying coverage to individuals participating in clinical trials, the cornerstone of cancer research. After recovering from cancer, children can no longer be denied insurance coverage due to a pre-existing condition. It also requires all new plans to provide preventive services without charging copayments, deductibles, or coinsurance, increasing access to regular checkups that can help detect and treat childhood cancers earlier. The Affordable Care Act eliminates annual and lifetime caps on insurance coverage and prohibits companies from dropping coverage if someone gets sick, giving patients and families the peace of mind that their insurance will cover the procedures their doctors recommend.

This month, we pay tribute to the health-care professionals, researchers, private philanthropies, social support organizations, and parent advocacy groups who work together to provide hope and help to families and find cures for childhood cancers. Together, we will carry on their work toward a future in which cancer no longer threatens the lives of our Nation's children.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2010 as National Childhood Cancer Awareness Month. I also encourage all Americans to join me in recognizing and reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this tenth day of September, in the year of our Lord two thousand ten, and of the Independence of the United States of America the two hundred and thirty-fifth.

BARACK OBAMA

help

2010-09-22T17:59:00.000-07:00

I ran some errands today and I noticed that there are pink ribbons everywhere. On shirts, hats, mugs, pins, so many things to buy for breast cancer awareness. It's wonderful! I have had many people in my family get or be effected by breast cancer and I am grateful there is so much funding and support out there.

But where is the gold?

My hope is that one day GOLD will be seen just as much. Childhood cancer is everywhere. It breaks my heart that it doesn't have the awareness it deserves. There's not enough funding and there's not enough support, but we can all help change that!

One of the things we are doing is holding a lemonade stand to raise funds for Childhood Cancer. I hope you can come out and support us. The address is 2345 Lambourne Ave, SLC, UT 84109. For more information or If you can't make it, please go to our page at http://www.alexslemonade.org/mypage/69433 and donate as little as a dollar. It WILL make a difference.

If you can't make it, hold one of your own! Find out how at http://www.alexlemonade.org/. I'm sure your little ones would love to have a stand! It doesn't have to be anything fancy. All you need is cups and lemonade. If you want, Alex's Lemonade Foundation will even provide the signs for you.

Another easy thing you can do is by posting about September being Childhood Cancer Awareness Month. Feel free to copy my AWARENESS post in full and post it on your personal blog.

You can also change your facebook profile picture to a gold ribbon for this month. It's easy! Tag yourself on mine and make it your pic. That's all I did. I hope I see A LOT more gold in the next couple weeks.

Please help get GOLD out there for everyone to see!

CANCER SUCKS!

Hearing the word cancer in any form changes lives forever. It changed ours. We will always recognize the sweet little bald heads that are fighting for their lives. We want to do all that we can to help families that are affected by cancer. We want to stop the heartache of knowing your child is going to have to fight with everything they have to live. One person alone can not make a difference, but all of us together can change the world. These children are given a huge responsibility to fight for their lives. We stand in amazement when we see the strength, the courage, the resilience of these beautiful little children. We as a family stand back and learn..we learn how to LIVE from them. We learn that even when life is the hardest it can be, we can giggle! We can cry! We can hurt! We can love! And most importantly we can stand together united as one to WIN THE FIGHT AGAINST CANCER! Come buy a cup of lemonade and be a part in changing how childhood cancer is treated, diagnosed and CURED! The support that has surrounded our family for Amelia has been the most amazing thing we have felt or been a part of. To see ,to feel, to know the love that comes from you is incredible. Our family has been blessed because of each of you individually. Thank you! Thank you FOREVER for the difference you have made in our lives. Love Amelia's support team

Seriously Cute

2010-09-20T21:26:00.000-07:00

Millie September 2010 Update

2010-09-17T15:06:00.000-07:00

Millie goes to the hospital once a month for her PORT chemo, but yesterday was the start of a new Maintenance round, which is every 3 months so she had to get a Lumbar Puncture as well. She does pretty good with it, but I think it's always a little difficult to watch your child go under anaesthesia. With Brady out of town I was panicked thinking she would wake up furious; it's a 50/50 chance. I got lucky! She was a little ornery, but nothing I couldn't handle. Like always she was a champ getting her PORT accessed and did fantastic getting her Vincristine.

We got some GREAT news:

Millie's FINAL chemo date will be

02-22-12

Although this date seems so far away, it's much sooner then we thought is was going to be.

I am tracking Amelia's hair growth every month on her clinic day by taking the same pictures of her in the same place, I thought it would be fun to look back on. Yesterday she was refusing to pose how I wanted. I let her pose the way she wanted in the 1st picture and she couldn't have been happier. The 2nd picture is how I pose her and she's starting to get a little mad at me. The 3rd picture she is fuming.

Got to love those steroids.

Clinic Stats:

Height: 103 cm

Weight: 16.1

ANC: 700

Amelia's ANC is still a little low so the doctors decided to keep her on a 75% home chemo dose.

A Great Day

2010-09-15T17:31:00.000-07:00

Although school started last week today was Millie's 1st day. She didn't even hesitate when it came time for me to leave. She adores Mrs. Patti and all the kids in her class. I am so grateful I have somewhere to send Millie that is full of people that love her. I didn't worry for a second that she would be made fun of, or the kids would leave her out, I don't have to worry about moms sending sick kids, or her feeling out of place. WE LOVE YOU PATTI! Thank you for providing such a safe environment for Millie. She thinks you are the Bees Knees and so do I.

We also went to the Utah State Fair with HopeKids today and it was SO FUN! We got there just in time to join them for fishing. Millie's cousin Oliver was the 1st one to catch a fish, but he wasn't so sure he wanted to touch it.

Next we hit up the Giant Yellow Banana Slide. The boys loved it, but I took Millie up kicking and screaming. I knew once she did it she'd like it and on the car ride home she said, "You wanna know something mom...I liked the slide even though I told you I didn't". Little Stinker.

We were also able to go on all the rides for free! Millie's favorite was ...The Banana Slide (at least that's what she just told me). She also loved the Dizzy Dragon. I wish I'd taken more pictures! The kids were all so dang cute.

Thanks Again HopeKids for providing a wonderful time for Miss Millie. We appreciate you more then you know. We all had a blast!

AWARENESS..

2010-09-13T11:25:00.000-07:00

via: www.kissforcami.blogspot.com
(thanks Chelsea for letting basically copy your post)

September is Childhood Cancer awareness month...

Gold is the color of Childhood Cancer. Wear it proudly.
I am still learning all I can about childhood cancer, please do the same.
We learned the hard way that this can happen to ANY child at ANY time, lets do all we can to help find the cause and cure!

You can visit these sites for info and to donate-

curechildhoodcancer.ning.com
http://www.curesearch.org/
www.stjude.org
http://www.goldthenewpink.net/
http://www.alexslemonade.org/
http://www.cookiesforkidscancer.org/
http://www.curechildhoodcancer.ning.com/
http://www.stbaldricks.org/
http://www.gladtogive.com/
http://www.crochetforcancer.blogspot.com/

*if you work for a corporation, tell them about Amelia and encourage them to donate to one of these charities this year!

--I also want to mention that Chili's is supporting St. Jude all month long and on September 27th they are donating ALL profits to St. Jude Children's Research Hospital. If you can do nothing more, please go eat at Chili's on September 27th.

A few other foundations I want to talk about are:

Make a Wish
and
HopeKids

If you read our blog you have heard me talk about both of these organizations before. We think they are amazing! They have helped give Amelia HOPE. They aren't looking to cure cancer, they are looking to cure the heartache that comes along with the diagnosis.
We really couldn't make it through all this without them!

Hope Kids held a 5K walk/run on Saturday and we missed it because we were in Lake Powell. I heard it was a blast and I think they raised about $40,000! Thank you to all of you who have already donated to our fundraising page in Amelia's name, it means the world to us. We LOVE Hope Kids and if you want to donate in Amelia's name we are continuing to take donations for HopeKids this week.