CureSearch walk for Children's Cancer

This year we are proud to report that CureSearch Salt Lake City has already raised $100,000 for Childhood cancer!  This is sooo exciting!  My goal this year was $500.  I have a ways to go to reach my goal.  I would like to get there by the walk which is Saturday, September 29, 2012.  When I started this journey with Ellie I knew I had to help find a better way for these kids.  That's why I support CureSearch.  They give almost every cent to childhood cancer research.  That's almost unheard of.  I hope that one day there is a cure.  And for Ellie and others like her I am willing to fight for this cause.  I know a lot of you have asked how they can help.  I have linked it to my blog so you can go directly to her fundraising page.  Our team name is Ellie's Angels.  I am doing a Bake Sale on Thursday if you are interested in coming out to that or donating a dessert or cookies.  It will be on the corner of Clark Lane and 1525 W. in Farmington.  Ellie is doing well and has been stable for two years now.  We feel very fortunate but are always on edge that it could come back.  It is more than overwhelming when you are told your child has cancer. I love all of our friends and neighbors in all the love we have been shown and these past few especially. Thanks for all you guys do for us.  This is also a very special day and we would love to see as many friends and family as we can there.  We are celebrating five years since we held our daughter Eve.  It's her birthday and what better way to celebrate than doing something for a great cause.  Will you be our voice?  In the last 40 years, the overall survival rate for children's cancer has increased from 10% to 78%. At CureSearch, our goal is 100%.

Be Part of the Cure

To reach our goal of 100% cure rate for children with cancer, CureSearch is mobilizing individuals, families and corporations across the nation to join our efforts. CureSearch has Regional Offices throughout the country that organize events and activities to raise funds for research on behalf of children living with cancer. http://www.curesearchwalk.org/saltlakecity/elliesangels

Will you be my voice?

Ellie and some local cancer fighting cuties are in this video.  http://www.youtube.com/watch?v=FW6obR4xj5A

I am a Child of God

I've been thinking a lot about life and about our little Eve lately.  She is always in my heart and wonder how different things would have been if she were still here.  I know that I have grown so much in so many ways since she left.  She will always have a piece of my heart.  I came across these verses the other day and couldn't help but think of our little girl in the arms of  her Father in Heaven.  

This is a song that is written for children who have gone back to our Loving Heavenly Father and Jesus Christ. It goes to the song, I Am a Child of God.

I am a child of God and He has called me home.
My earthly journey's through
but still, I do not walk alone.

He leads me, guides me, walks beside me,
helps me find the way.
He welcomed me with open arms.
I live with Him today.

I am a child of God and I have gone ahead.
My earthly life was brief but oh,
such peace and love you gave.
You loved me, held me,
stood beside me and though I cannot stay.
You gave me much to help me
and I live with Him today.

I am a child of God and I will wait for you.
Celestial glory shall be ours,
if you can but endure.
I'll lead you, guide you, walk beside you.
Help you find the way.
I'll welcome you with open arms,
One bright Celestial day.

I LOVE chocolate milk!

I LOVE chocolate milk!  Doesn't everyone?  At night time, I usually cuddle my little Claire as she is getting ready for bed.  I sit in my rocker and get to snuggle her as she drinks her night time bottle before bed.  I love to whisper to her how much I love her and she nods and sucks her bottle down.  The other night as I was whispering "I Love You Claire Bear,"  she paused for a second took her bottle out for the first time after I said this, and says, "I love Chocolate Milk."  Now I know what she is really thinking when she nods.  Gotta love my little Claire Bear!

Paper vs. Plastic

(I finally got the pictures added but this post was written a few weeks ago.)  We had a fun day last Friday.  To tell you how it started, I have to go back to the week after Christmas.  We were at a friends party when one of my neighbors told me that she saw Macy's picture on their paper bags.  I was confused at what she was saying.  I had no idea that Macy had entered a contest at school for Harmon's Grocery Store.  I went home and asked her if she had won a contest for Harmon's.  She said she didn't know if she won and that it was probably one of the other Macy's at the school.  A few days later, we managed to get over there and low and behold, there it was with her name on it.  M gave the silly stern, trying not to smile grin. So her.  I could tell she was so excited to have won.
They got back to school, and a few of the other kids had seen it and were so excited for her.  The class of the person who won got to have an ice cream party provided by Harmon's.  So on Wednesday I got a call from her teacher that Harmon's would be here to present her the award and the party.  On Friday we came to the school and before we walked in, I asked the presenters a little about the contest.  They do four contests a year and the different stores take turns hosting the contest.  This was Farmington's first contest since they have been open for this.   The schools around it then submit their entries.  At their school, they did it in their art class and the children got to draw a picture.  The rules were that they could only use three colors and the lettering had to be so big.

Macy with her teacher and the Harmon's representative.

 The kids thought Claire and Ellie were so cute!

 We had to get some too!

 Grandpa got to come and enjoy the festivities.

 The kiddos were super excited for the ice cream party!

 Macy, holding back her excitement. 

 Macy with her teacher, Art teacher, and Harmon's reps.

It was a special day for her and she had a fun time being the center of attention for a few minutes.  They presented her with this framed picture of her bag and a twenty five dollar gift certificate to Harmon's.  The kids then got an ice cream sunday party and cookies.  It was a fun day!  Now when you go to Harmon's opt for paper vs. plastic and take a look at her Winter Wonderland!

The Gifts

Christmas is one of my favorite times of the year.  I am amazed every year when I see miracles happen.  We too have been extremely blessed when it comes to others.  Usually anonymous.  When my daughter was four we were sailing along in life.  Things were going well.  My daughter taught me a great lesson that year.  She saw a need and came to me with that piggy bank and asked if we could go take it to someones doorstep and leave it for them.  It couldn't have been more than ten dollars but it taught me a valuable lesson of selflessness.  For all she new it was a hundred to her.  But she felt that this other family needed it more.  Than fast forward to the Christmas of 2009.  We had spent a week in the hospital for an illness that most people do o.k. with, but for Ellie and her weak heart, I watched her struggle for every breath and wondered if this was how it would end.  We left the hospital exhausted and beaten.  I could care less if Christmas happened.  In fact, I was hoping it would just go away.  With M and A being seven and five they just wouldn't let me forget. As Christmas neared I was fearful of what Christmas would bring.  We had spent the summer coming up and down from St. George and the bills were piling up.  It was amazing how fast your life savings can disappear when life decides to take a hit or two or three.  Then came a knock on the door.  There was a jar of money on the front porch, then another knock and another.  I was amazed at all the anonymous gifts that helped us that year.  We ended up having a wonderful Christmas after all and it helped to pay some pressing bills at the time.  It changed my attitude around and made me so grateful for the people in this world.  It was amazing to know that they thought of our little family.  We were blessed and would like to Thank those that so selfishly gave when they could have kept that money for something great.  We only hope to pay it forward someday.  Even if it is ten dollars in a little piggy bank.  It makes me want to serve others any way I can.

So I am jumping around a little bit.  In 2007 we received an amazing gift from God.  It was our little girl Eve.  She was not meant for this earthly life and was too perfect to stay.  We got to hold her for a few hours and gave her a name and took molds of her hands and feet.  I felt the angels that day comforting us as they took her home. That Christmas a Family that had chosen a family to do a sub for Santa every Christmas had heard of our sweet Eve.  They decided that year the family would be ours.  And instead of presents, they would give the gift of a Grave Marker for our little girl.  Every time we went to her place, the grass was fainter and fainter and soon blended in as if the grass no longer had been disturbed.  I cannot tell you how much that gift meant to us!  It gave her a place we could go to and for us was a priceless gift.  I know they never saw our eyes light up and the little ones jump for joy but I hope they know how much that gift meant to us.  I think about that selfless love a lot.  She has a place that would have taken a while for us to come up with and helped in the healing process to not worry about how and when we get her marker.  I feel heartache when I see a new grave.  I want everyone to have that same opportunity that we have.
We still see random acts of kindness from those we know and those that remain anonymous.  We loved going to California this year and could not have done that trip with out those loved ones who helped us get there.  We love you and are indebted to you.  Sorry for rambling, but I desperately want those that have thought of our family in thoughts and prayers have a special place in our hearts.

Surgery Day! (Not for Ellie, but Claire)

 Well, I'm still trying to figure Blogger out, so this is this day in a nutshell.  But in total random order. (Because I'm not sure how to switch them around.)  If you know how, leave me a comment.
Ever since Claire was born, she sounds like a Pug Dog.  She breathes incredibly heavy and has a terrible time sleeping.  She would wake with apnea spells during the night so it was determined that her adenoids which were extremely large, needed to come out.  Along with that they did a Bronchoscopy and Laryngoscopy sp?  She also had been diagnosed with laryngomalasia since birth, floppy airway.  So this was hopefully going to get her on the road to recovery.  Well it worked, for three days and then we are back to the same rough chronic cough and bad nights.  A biopsy was taken and she does have gastro reflux:(  We started her on Zantac and we will have to see what else we can do when we see the Gastro Intestinal Doctor three months out!  We have survived 20 months of no sleep, what's another three, right?

As bad as surgery went for Ellie, this one went really well.  I still did my surgery routine.  I can't eat the morning of except for a Coke.  I am superstitious about what I wear.  I can't wear eye makeup in case I cry.         I must have my LIVESTRONG bracelet.  That helped me get through the surgery from Hell with Ellie.  And I spend every moment the night before trying to memorize their face and their laugh etc. just in case.  Silly I know, but it works for me.  I still have nightmares slumping to the floor and watching everyone race to Ellie's MRI room where they called a CODE BLUE over the loud speaker.  I remember thinking, is this how it ends?  No parent should stand by and watch their child be resussitated. Bad Memory, anyway, this one went the way they should go.  It still rips my heart out to hand over your child and part ways.  It never gets easier, anytime they are put out.  I did stay at the hospital and actually left to go to the cafeteria and eat with Nate.  I usually escape the hospital, just in case they call a code.  Hate the over head speakers.  I jump every time.  While we waited, they gave her some Versed.  Love that stuff!  With in minutes she was bobbing her head and acting dilirious.  Hilarious!!!  She would drop her head and I would say, " say cheese".  She would slowly lift her head and say, "cheeeeeeeeeeeeese".  It took about an hour and when I came back, she was super sleepy.  So we let her sleep until she popped up about an hour later sat straight up and was wide awake.  Also funny, if you were there.

 This was Claire on a high running laps around the surgery waiting room.  She hadn't clued in that we were there for her instead of Ellie.

 This was her waking watching Tangled.  She wanted her I.V.  out so bad.  They put it in after she was asleep, which was a pleasant surprise.  

 This was snuggle time with Mommy.  She was pretty much on high after that. 

 See, I told you they are out of order.  This was her when I first came back to see her.

Soooo very sleepy when we first saw her.

 Before surgery, running laps still.  She loved running this doll from the horse to the high chair and back.

 She thought she was in heaven.  Watching movies all day and eating chocolate pudding in bed.

 It didn't seem to phase her until three nights later.  She actually slept for three glorious days.

 Don't worry, she is back to her toss and turn, scream in the night self.

You Know Your A Cancer Mom when...

The other day I was changing Claires diaper and I noticed some nasty looking bruises on the back of her leg that went up to her back. Immediately my mind raced and went into worst case scenario mode. "Oh no, could this be Leukemia?" I thought to myself that she had looked a little pale lately. She has the cutest pudgy belly so then I thought, could she have a tumor in there?  My mind raced. Surely cancer can't hit the same family twice. Then I started to plead with the lord that this not be cancer and that I could not handle having another child with a serious illness. During the two minutes, I debated calling my Oncologist and my heart beat began to race like it did when they first told us Ellie had a tumor. I was starting to get physically ill when I took a wipee to the bruise to get a better look. To my astonishment, the bruise smeared! It wasn't a bruise at all, just a little girl that needed a bath and one embarrassed mother. I try not to do it, but I've diagnosed everyone I know with either cancer or a heart problem at some point. We have gotten worst case scenario not once but twice so forgive me if I recommend that your child go see a doc.

The First Half...

Phew! Today is over and we made it. I get so worked up over these MRI's. I think it's just from her going under general anesthesia, because we are well aware of the stunts that Ellie has pulled on us. They usually have us go through same day surgery due to her history. It makes for a really long day! We happened to be sitting by a family that was getting ready for an open heart surgery. I could see the anguish in their faces. It made me flashback to those times we were anxiously awaiting Ellie's surgery. They asked us about her heart surgeries. I didn't tell them about how Dr. K came in twenty minutes after starting a six hour procedure to tell us that they were aborting the surgery because her heart stopped and they had to revive her. I leave some details out sometimes for the sake of others. I wanted to make there pain go away and make it all better for them because we've been there.

I laugh because every time Ellie comes out of anesthesia, we never know what we are going to get. Angry and hysterical, so sleepy that she can't wake up, giddy or sad. Today she was sad. But she seemed to snap out of it faster than she ever has. She ends each time with on a high though. She runs around like the Tasmanian Devil until she literally just crashes. From every hospital stay, she gets on a mania. It's hilarious! Her blood pressure was really high afterward and her heart rate was in the 180's at rest. They were really concerned but because they had us hold two of her doses to get a true blood pressure reading, they felt like we could go home if we got her meds in before we left.

Good News... we got a call from Oncology, and the preliminary results of the tumor is that it is the exact same size as the last scan. We were really worried that it was growing from her eye drooping more. They used the word Stable which is good. I would like to here N.E.D. which stands for No Evidence of Disease, but hopefully that will be in our future. We will be meeting with Dr. Lemons next week to know further. We will her from Michelle tomorrow because Dr. Everitt is out of town. Wahooooo!!! I think I will be able to sleep tonight.

A Cure for Ellie...

It's been a good couple of months for Ellie. She escaped the winter time fairly well. She did get approved for the lovely synergis shots which I think helped even though it is pure torture to watch her get every month. They are thousands of dollars per shot so we were grateful that she was approved for a second year. We did a pretty good job keeping her out of public and I think that helped a bit. It was funny when spring hit and they got to see Ellie and Claire again. Neighbors were amazed to see them all grown up and "big".

Claire and the rest of us did not fair so well though. Claire had a double ear infection every month and her ear drum burst in April. Who knows if she will end up with tubes. Let's hope the summer gives her some relief. So far so good, knock on wood.

Ellie had her appointments at the end of May. Now when we go there, it is such a welcoming place for us. We ran into two of our cancer cuties before we got started. Then as we were checking in we ran into our heart buddy Mason. Our echo tech. knows us now by name. Barbara in cardiology, comes in every time to do our EKG's and blood pressures and Ellie knows the routine and is so very comfortable with it that she acts like a pro now. Is that a good thing or a bad thing that we feel that comfortable there. Anywho, the end result is that her valves are leaking a little less. Wahoo!! The only thing that worries me is that they didn't up her meds. And it seems like every time they don't do that, the next appointment, they are leaking more. We know that her valves will need to be replaced at some point, but the longer we can hold off the better.

On the tumor end, I have been internally torn on if her eye is worsening on the ptosis and miosis. (Drooping and pupil size). Ever so slightly. But enough that three people mentioned it to me without me saying anything. That was my cue to contact Oncology and we are doing a MRI on both her heart and tumor on June 15. Aughhhhhh! You know how I hate MRI's but I know it needs to be done to know where to go from here.

That leads me to this video that was done by the most amazing people. Thank you!! It is a video of all Utah kids with cancer. We know and have met most of the kids in this video. Please help us fight childhood cancer by joining our team. You can walk with us on July 9, 2011. Ten dollars a person, children are free. Or you can virtual walk if you can't make it that day. Anyway, we would love to see you all there. We would love to see any of you heart moms too:) Ellie appears a couple times in the video so look for her. Thanks again for all your thoughts and your prayers on Ellie's behalf. We feel them and are so appreciative of them!





Welcome. I am participating in The Salt Lake City, UT CureSearch Walk to raise funds for children’s cancer research. I have pledged to raise money for this devastating disease. With your help, I know that I can surpass my personal goal. Please donate. It will make a difference.

The CureSearch Walk celebrates and honors children whose lives have been affected by children’s cancer, while raising funds for the lifesaving research of the Children’s Oncology Group. This group of medical professionals treats more than 90% of children with cancer at over 175 hospitals in the United States. These experts provide world-class care in communities across the country.

Every day, 35 children are diagnosed with pediatric cancer–7 of those children will not survive. Cancer is the #1 cause of death by disease in children. Although the cure rate is now 78%–up by 30% in the last 20 years–it is not good enough. Our goal is a 100% cure rate.

Questions? Contact walkinfo@curesearch.org

Star Struck...

This is my nine year old. She will be ten in a few weeks. Crazy to think that I have a kid that old. A little back ground on us, we belong to the Church of Jesus Christ of Latter Day Saints. And the other day we went to eat at the good ol' Chuck O' Rama with Nate's Parents and sister and brother-in-law. We were seated and low and behold Henry B. Eyring and his family were eating at the table behind us. He is the first councilor in our church. Next to Thomas S. Monson who is our Prophet. Needless to say, we were on our best behavior and Macy and Adrie were excited to see him. Of course we didn't want to bother him while he was eating and everyone else seemed to be paying the same respect. The girls were so excited and asked if they could say "HI" to him but I told them that now was not a good time. So as he was leaving, a handful of people had surrounded him to shake his hand. Macy took this as her opportunity and got up on her own accord to join the group. Being the only child, she was getting aced out and realized that she would not get through the group to shake his hand. She sheepishly came over to where I was at (getting dessert of course) and acted like she was on her way over to me anyway with a look of discouragement. President Eyring saw this and followed her and asked to shake her hand! This absolutely melted my heart along with hers. She talked about it for days about how he shook her hand. I was so grateful that he noticed her because it totally made her day. And if you know my shy Macy, this is not something she would normally do.

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.

THANKFUL #7- ADRIE

I am so grateful for this beautiful little girl in my life. She has always been so close to the spirit despite her feisty personality. Her and Macy have been at each other so much lately. So today, she told me that she was going to be better and that she will not fight with Macy for three weeks so that she can get in the habit of not fighting. Then she continued her plan of action. "If we can't do that, than we will not fight for two weeks. And if we can't do that than we will not fight for one week. And if we can't do that we will not fight for one day." A short time later, I hear them fighting over a snack. So I ask her, "I thought you guys weren't going to fight, in which her reply is, "I guess Macy can't do it."

I love how this girl is so candid. She keeps us laughing with her grown up talk and sometimes, I am not sure whether she is seventeen or seven. She reminds us every night about "blessing Ellie's Heart" during our prayers. She adds so much life to the party and with her petite build leads her to use her voice extra loud. She can't whisper for the life of her. I am always amazed at how much volume can come out of one child. Every person in this family is a puzzle piece and we need all of them to see the big picture.

THANKFUL #6- INSURANCE

This is been such a blessing to have insurance. We have never had issues with them not treating Ellie. Even her Synergis Shots, which are two thousand dollars a shot and she gets them for seven months each winter have been approved. This has been a blessing that we have not had to fight it. We do however have bins of medical bills and stacks of insurance papers that are over several feet high. Sometimes we go through them, sometimes we let them stack up, but in the end, I don't know where we would be with out it. This connects to being thankful for meds because the cost for those would definately be more than we could handle.