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.