Millie's Curls

Do you believe in Miracles? I do!

Read Crystal's post today about her Super Skyler

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

and

PLEASE continue Praying.

Diagnosis Day

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

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

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

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

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

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

(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

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.