What was thought to be the end.

It's hard for me to look back at these pictures. Both Brady and I had a little bit of an unsettling feeling as we were going into our "last" clinic appointment. The whole day felt off some how, and now we know why.

Millie getting check-in; height, weight, and blood pressure. She always would stand on her tip toes to try and trick Pam.

Good Night Sweet Girl.


In recovery

Not a happy camper when she wakes up,

until we are on our way home and she finally gets to eat her rainbow cupcake.

SURPRISE!

Cousin Sherry put together a surprise get together at the house. We drove up to everyone chanting Millie's name and waving signs congratulating her. It was a good moment. I have videos, but I don't feel like posting them.

Thank you to everyone who came out and to those of you that have been a support to us over the past couple years. We love you.

WE LOVE MILLIE!

Ava Kate Millie Whitney Melody

Millie was able to have 3 days of celebrating before we landed back at the hospital. They let us come home Monday night and be together as a family before we were to start the next insane portion of our life. From here on out this blog will be dedicated to Miss Millie and her FINALLY battle with cancer.

Thank you so much for the prayers that have been coming in. We feel them every single day.

Kidney Stone

About a month ago I had just come home from a funeral and I took one look at Millie and knew something was off. This girl does not stop playing unless she feels pretty awful and she actually asked for the neighbor kids to go home, not a good sign. While I was trying to find every one's shoes and socks Amelia started screaming like I have never heard in my life. It still gives me nightmares. I flew to Primary Children's and after much demanding on my part that there was more to this pain then a little constipation we found out Amelia had a kidney stone over the size of a centimeter. This would be large for an adult, let alone my 6 year old. She had passed it from her kidney through the ureter and it was stuck above the bladder. They couldn't get Millie in for surgery for a month so they had us stay over night, placed a stint the next morning, and sent us on our way.

CT scan in the ER to see what was going on.

Millie and Austin enjoying the ride from recovery.

Amelia had the stint for about a full day when she started screaming again. I called the hospital and after hearing her over the phone the surgeon changed the date for the next morning. I was so relieved. What happened was when they placed the stint they pushed the stone back to her kidney so she passed it through the Ureter again! Poor thing. It was still stuck above the bladder so they had to go in and blast it.

Before surgery.

After surgery.

She was not feeling well and yes I know she just had surgery, but I could tell something was off. Usually she recovers pretty well and even days later she was feeling horrible. After her procedure she just wasn't herself. She had high fevers, a lot of pain, and something was wrong. We called the on-call doc and they had us bring her in. Her crit (red blood count) had dropped from 36 to 17 in a 4 day period. It was dangerously low and Amelia needed an immediate blood transfusion. We had actually been in the ER the night before for her fever and pain, but they sent us home. Someone missed the fact that my daughter who has a blood cancer had very low blood counts. She should have been admitted that night. Thankfully I called the next morning to check in and see what the docs were thinking since she was still fevering. It was at this point that they noticed she needed a transfusion. They ended up not only giving her blood, but admitting us because she had lost so much, and they had no idea why.

After the transfusion they sent us home a couple days later. It took another week to realize she had a ton of fluid around her kidney and she also had either an abscess or urine leak. They couldn't decide which. I was just grateful they figured out what was going on. They sent Millie home on IV antibiotics for the week and that was that. Her body finally recovered and she seemed to be feeling better. It was a horrible month, but we were past it now and looking forward to her finishing her chemo treatments after 2 years.

She finished her last dose of antibiotics the day before our final IV chemo which was Thursday. Amelia was to have her last clinic appointment, last lumbar puncture, and last Vincristine dose. We had been waiting for so long to reach this day.

These are all pictures from the Kidney Stone ordeal...

Fevering and in a lot of pain after surgery, so we're back at Primary.

Still having fevers so we are back again...

Poor girl had her stint pulled and an IV placed on the same day. She was one unhappy girl.

Amelia had a GIANT red mustache from drinking the contrast fluid for yet another CT scan to figure out what the heck was going on. This was when they finally found the fluid around her kidney after 2 weeks of torture.

They sent her home with IV antibiotics that Brady and I had to give her through her port every 8 hours. After a few days Millie finally started to feel better and once again there was an end in sight, at least that's what we thought.

Thursday Feb 2 came and because Amelia had been having so many issues her doc decided to do a bone marrow aspiration. This is not normal after A.L.L treatments. I thank my Heaven Father every day that we decided to go ahead with it. If we hadn't who knows what would have happened.

Feb 6. 2012 our life's were once again flipped upside down as we were informed Amelia had relapsed. 80% of her bone marrow was filled with Leukemia. Amelia continues the fight for her life.

1st Hair Cut

THANK YOU MOLLY!

What happens when we are stuck at home with low counts

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

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.

October Clinic Update 2011

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.

Millie September 2011 Update

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.)

Austin Day 19 and AMELIA'S CLINIC UPDATE

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.