Randomness...

This was an exciting moment for me. Ellie has not watched T.V. at all, and for about ten minutes, I caught her soaking it in. This would be useful for echos and other moments that even ten minutes here and there would be priceless. I know some of you are probably thinking that it is totally wrong to have our kids watch t.v., but it would be nice for a few minutes in a day. I just think this moment was so cute with Claire even being glued to the t.v.

My girls usually start every morning off with a bottle. Ellie's has one of her meds in it so that's why she still drinks a bottle.

"She is nick named "Smiley" for a reason. She is so proud of her accomplishments.

One of the very few with them all looking at the camera. I took about two dozen of this pose and this is the best I can come up with.

Meeting daddy for lunch. Ellie has to have a hat on just about everywhere we go. She's especially attached to this blue one. So if you see us and it doesn't match, no I am not color blind.

Claire wearing an adorable hat her cousin made for her.

Wow, those pictures are totally random, along with this post, but what the hey! It's been a while I know, but I do intend to go back and fill the events of the last few weeks. I have jotted down all my days of being thankful, I just need to get them on the blog. It's been a little crazy with the holidays. My mind has been spinning lately and I have been a little on the "thinking side." I feel like I have so much to do. But Claire has been sleeping so so so poorly lately I am just too exhausted to do anything else. Lately, I feel like it is a victory to get out of bed and get us all dressed for the day. It absolutely amazes me that Claire can get up and act like she has all the energy in the world. Why can't I do that. I really should be sleeping right now but I wanted to see if any of you have any advise. (I sure hope that someone still reads my blog after my lack of posts.) ;)

We had a great Christmas, with a few minor bumbs. Including a trip to the E.R. for Claire instead of Ellie. I feel like the worst parent ever. It involved a waffle iron and a hanging cord and a permanent triangular shaped indent in her head. Luckily no permanent damage or bleeding on the brain. Just a permanent scar on my heart for allowing this accident to take place under my care.

We also had a record breaking night on Christmas eve after putting together a thousand piece doll house. Fun times Eh! We ran out of time to finish the doll furniture that I was making for Adrie. So we put it in a box along with the ribbon and flowers and when she opened it, I said "cool, it's one of those kits that you get to put together your self." She lit up like a Christmas tree and thought that was the coolest gift ever. Now she can't wait to put it together herself. Score!

I wanted to give a little update on where we are at with Ellie. On the last Cardio visit, most everything went well except for her valves are leaking more than the last echo. We know that some day she will need her valves replaced, but we are hoping that is way down the road. This caught me off guard because she has been slightly improving the last few visits. Also, her blood pressure has been consistently high. So they ended up increasing her meds. Not a big deal, or so they say. But this is where my worries kick in. A week later we go to her pediatrician to get her $7000 shot of synagis. (Thank goodness for insurance.) And the Dr. noticed that she heard her heart murmur really loud when four weeks ago, she barely heard it at all. Plus, in the middle of December, she had two weeks of totally random vomiting. With no symptoms of being sick. (sign of heart failure) I am not so sure what to think, but cardio doesn't think they need to see her unless her symptoms get worse. Can your heart fluctuate between good and bad like that? I know that because of the cardiomyopathy, there is always the chance she will need a transplant. I know I worry more than I should, but it's hard not to after what we have been through with her. She has never chosen the path of least resistance in this battle. Then I worry that the cancer is still there and we are not doing anything about it. I came across a blog today with a kid with the same cancer as Ellie's. A neuroblastoma. I don't know a whole lot about this cancer, except for what I have researched online. Which I don't recommend. It can be quite scary. He has been fighting this battle for four years since he was two. And has been pretty successful until recently when the cancer keeps coming back. It is such a rare cancer and it is a childhood cancer so not a whole lot is known about it. I wish I had a magic magnifying glass that I could peek inside her body on a daily basis to see what it's doing. I know they say the tumor has been stable, but how do they know it's going to stay that way. I took this quote from this boys dad. "No matter the words chosen by our doctor, this was the question. Surrender to an enemy that is too much of a coward to fight an adult like myself, but rather it looks to steal our small innocent son." I wish this was a battle that we could help our kiddos fight. But it is their bodies that have to fight on their own. Every once in while, I am reminded that we have that cancer lurking in the background. On the news today, there was a story of a fifteen year old athlete that just lost her fight with cancer. Cancer Sucks!!! I hate that anyone has to go through this let alone all the kids that have to fight this disease. I have felt from the beginning, let it be my fight, not hers. Same thing with her heart. She's too young to deal with a failing heart. I will get over this funk and be back to my same self soon. I promise! I will get to that happy place and live in the moment instead of dwelling on the what ifs. I just hate to see an innocent child loose their life early. I have seen too many recently that have lost their battles. I want to stay on top of Ellie's. I do know that having an MRI every day is unreasonable. But how about that magic thingy.

Anyway, I know, it's heavy stuff. So on a lighter note, Nate was talking the other day and mentioned that he just might kill over. So Adrie's response to this was " it's o.k. Dad! You'll just get resurrected if you do."

THANKFUL #28- MIRACLES

Sorry it is a little blurry, but it says "Blessings- I asked for a Miracle, I got one. It wasn't what I asked for, but it was exactly WHAT I NEEDED."

This sums up my life. Miracles have been so very present in my life. My many miracles include getting through five difficult births. Where we have ended up living. My husband, my girls, my neighbors, my friends, my family, my church, our jobs etc. It's easy to say that Ellie is a walking Miracle. Every day that I have had with her has been a true Miracle. But I need to also recognize the many Miracles in my life. Even if I didn't ask for them but got them anyway.

I cannot forget the many miracles that I witnessed first hand during our stays in the hospital. Some of them were what some would consider a burden but with out them, I would not be who I am today. Part of it, is getting to witness the love and sacrifice of others who rallied around us and lifted us up during these past few years. Those have been true Miracles.

I would like to send out a special Prayer request for a little hero in the hospital right now battling ALL. (leukemia) He is a fighter and needs some extra prayers for him and his momma right now. His name is Skyler. I found out about him through my younger sister who has a class with his Uncle. Who got to swapping stories of their special niece and nephew one day. His blog is www.crystalandskyler.blogspot.com. Lets cheer him on and pray for continued Miracles.

THANKFUL #27- FOOTBALL

My cute little "UTES" with their older cousins who are also Ute fans. What a fun game!

I know, your thinking what? I have always loved college sports. And have always loved the Utes! They made my day today. I grew up cheering for the Utes and then literally, I was able to be a cheerleader for them during my college years. I was on the side lines at the Final game in San Antonio. I was right there for Keith Van Horn's .03 second shot to win the game for the WAC tournament down in Vegas. They have made my day many a times over the years and today was one of them. I love going to a football game with my best friend, Nate and love that we can enjoy the crisp fall air and a hot dog (the only time I like hot dogs), and the comradary of being part of a team. I loved going to Costco afterwards and seeing so many in red and having total strangers say, "good game." Awesome! I can sleep good tonight. I had a migraine all last night into today and when I was tossing and turning last night I thought, "this time tomorrow we will know who won." My husband loves how passionate I get over our team, but says sometimes it can be a detriment, when I am as into the game as he is and the kids need something. Sometimes it's good to get your mind off of things and enjoy some football.

Thankful #19-Birthdays!

To see all these hero's at the same table is so amazing! Celebrating another year with your loved one is breathtaking!
Ellie was cruising around the skating rink on this little wiggle car. Today was one of those days that was picture perfect. To see her here and cruising around no less, when last year she was on oxygen and pale.

Enjoying the ball zone! I had to let all my germ phobias aside for the day so I could enjoy watching my girls enjoy life! Boy it was beautiful!

For this Birthday from Hope Kids, she opened up a little doll and Tinkerbell. Man she was so excited. She saw Tinkerbell and hugged and kissed her over and over.

You know those days you want to remember so bad
but no picture or camera can capture the moment. In my mind, I kept taking mental pictures. This was a moment that I wanted to seer into my mind.

Last December when Ellie turned one, I woke up that morning and just started to bawl. I was so emotional. Even the day she was born, our previous baby was stillborn at birth, so needless to say Ellie's birth was extremely emotional. I couldn't believe that we had come so far and that Ellie had made it to her first birthday. This was a day that I wasn't sure we would get to celebrate with her. Two days before we were in the hospital for a scary procedure. I wanted to plan the biggest bash that we could possibly plan, but with her being in the hospital for a week prior, we thought it best to keep things small. This year we got to attend a Birthday Bash for an organization called "Hope Kids." This is an organization for kids fighting life threatening diseases. I couldn't contain the tears when they gathered all the kids to blow out the candles. Looking around the table, there were kids who were in the middle of fighting the biggest fight ever, bald, pale and week from the chemo. There were kids who were in a better stage of their treatments, and parents or siblings who were stepping in for the kiddos who lost their battles. They all give me inspiration. I hope that Ellie can give some of them the "HOPE" that we so desperately needed last year. We were carting around oxygen and wondering if we would reach that ever so important milestone. As you can see, Birthday's have a new meaning for us.

THANKFUL- #11 Patience

I have learned more about this subject in the last few years than I have my whole life! It has been a huge life lesson that I have had to try to implement in my life over and over again. We waited over a year to get pregnant with Eve (which has never been a problem for us) only to have her leave this world prematurely. And then with Ellie, her whole life has been a waiting game. Wait and see what her tumor does, wait for the right time to get her surgery, wait and see what happens to her heart and so on. I am grateful for the ability to be more patient these last few years. We have seen rewards come along the way slowly but surely. I have heavily relied on my faith lately. One quote that has helped me along the way is from one of my church leaders.

"Patience is tied very closely to faith in our Heavenly Father. Actually, when we are unduly impatient, we are suggesting that we know what is best–better than does God. Or, at least, we are asserting that our timetable is better than His." --Neal A Maxwell

THANKFUL #9- MACY

I am so grateful for this beautiful young girl in my life. She has been a life savor many a times with helping me with the girls. She is very responsible (most of the time) and her sweet personality has been such a blessing in my life. She is the perfect oldest daughter and has carried a lot of burdens in her young life. I hope the worry of what has happened in the last few years hasn't scarred her for life. She has had the worry of life and death and watched us worry. And when asked the question if Ellie was going to die too, all I could answer was I don't think so. When we first moved to St. George, I had talked about getting a job. So to help out she said "Mommy, you can go and get a soft job like Aunt Milli (who worked at a bank) or at a store or something. You don't have to get a hard job." We would always say that Daddy works hard. She has always been so witty. She is such a big help with her little sisters and has always gone by the book. She is a very good reader and you can usually find her nose in a book. I love waking her up in the morning, cause she always wakes with a smile.

Ellie's Shortened version of "Her Story"

This was Ellie's segment that ran in the news the day before the big race. She did such a cute job with Kathy Aiken. They came to our house and filmed for about an hour and a half, so it was interesting to see what they ended up with. They did however think that it was irrelevant to mention that Claire was her younger sister. Other than that we think they did a pretty good job. I wondered how they would condense her story down. She has had quite the ride and your welcome to join us...

Video Courtesy of KSL.com

FARMINGTON -- It's a most difficult family ordeal whenever a child faces cancer -- and cancer is only half the battle a little girl in Farmington is fighting.

Ellie Cason is only 21 months old. Her family calls her their "princess with wings;" but for the near future, this little Tinkerbell will have to stay on the ground.

"When she was two and a half months old, she was diagnosed with a neuroblastoma -- which is a cancerous tumor in her neck," explained Becca Cason, Ellie's mother.

What is... neuroblastoma cancer?Neuroblastoma is a disease in which cancer cells form in nerve tissue of the adrenal gland, neck, chest, or spinal cord. It is the most common cancer in infancy, with an annual incidence of about 650 new cases per year in the U.S. Almost 50 percent of cases occur in children younger than two years old. The five-year survival rate for children diagnosed during infancy is over 80 percent. However, that percentage falls to 45 percent if the diagnosis is made at one year or older. -National Cancer Institute At 5 months of age, Ellie and her parents went to Primary Children's Medical Center to determine the best way to fight the cancer. While there, something went terribly wrong.

"She was really weak, really breathing heavy, had a lot of heart failure; she was in total heart failure," Becca said.

An X-ray revealed little Ellie also had severe cardiomyopathy -- a disease of the heart muscle. Her heart was working at just 10 percent capacity. Twice, Ellie's heart stopped beating.

"It was hard to watch a nurse run down the hallway and yell, ‘We need paddles! We need paddles!" Becca said. "But she survived that too. … She's our little miracle child."

Becca believes Ellie has a guardian angel on her side. Before Ellie's birth, another daughter was stillborn: a baby named Eve.

"I kind of think of it as she's (Eve's) watching over her. She (Ellie) loves wings, so I always thought that her older sister Eve was watching over her," Becca said.

And Ellie's two oldest sisters are taking care of her. Macy and Adrie have taken Ellie under their wings.

Did you know...?Approximately 12,400 children and adolescents younger than 20 years of age are diagnosed with cancer each year in the U.S. Approximately 2,300 children and adolescents die of cancer each year, making cancer the most common cause of disease-related mortality for children 1-19 years of age. "It's hard, hard to see any of your kids struggle," said Nate Cason, Ellie's father. "But I think as a whole it's brought the family together. Her sisters, it's just brought them close together."

That bond will be needed in the next several months. Doctors must soon decide whether to remove the tumor or first try shrinking it with chemotherapy.

Though her heart has increased to 20 capacity, Ellie must be cancer free, or at least in remission for one year before, she can be put on the heart transplant list.

"That kind of complicates it with the heart issue. The chemo weakens the heart significantly," Nate said. "So we're just trying to keep things in balance."

They also try to keep Ellie smiling. Thanks to the Utah Hero Foundation, Ellie got a visit Thursday from Tinkerbell.

"Our neighborhood friends, family; it's been great. They've really come together in more ways than we can even count," Nate said.

The Casons should learn the next step for Ellie's treatment in about three weeks.

Meanwhile, the Utah Hero Foundation has organized a 5K race in Ellie's honor. It's scheduled for Saturday morning, Sept. 18, in Farmington. CLICK HERE for more details.