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."