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.