How Cancer saved a Heart!!!

Every Heart has a story. We have a heart mom that is hosting a night of Heart Stories. Thanks Stef, you have been a huge help to me lately. I wanted to get in on the discussion so here is our story.

Ellie’s journey is a complicated one, but one that could have had a whole different path with awareness of CHD. Ellie was born in December of 2008. She was the fourth little girl born in our family. Her next oldest sister unexpectedly died in utero, so during my pregnancy with Ellie, she was closely monitored. During a routine visit to the neonatologist, Ellie showed signs of tachycardia. After that went away, she developed a heart murmur. For the rest of the pregnancy, we continued to hear it till I gave birth. The doctor did not hear it immediately after birth, but when the pediatrician came to the hospital, he could hear it again.

We took her in for her one week and then her two week visit and both times the murmur was heard. We took her in at two months and same thing happened. The doctor told us that most murmurs are benign. We felt a little relief but it remained in the back of our minds. A few days later, she came down with RSV. We were scared, but she managed to get through it o.k. with outpatient treatments given at the hospital. About two weeks after that, she developed a Horner’s Syndrome. Her right eye drooped and her pupil was extremely small. We thought she had a stroke! The pediatrician referred us to an eye doctor after we insisted that her eye was not normal. After visiting the eye doctor, she diagnosed her with the Horner’s Syndrome. This is usually caused by a pinch on the sympathetic nerve. An MRI was done a few days later. This original scan showed nothing according to the person that read the scan. Her weight at this time stayed the same for the next few months. A little over ten pounds. We noticed that her legs and arms had a rash on them. The doctor thought it could be fifths disease or an allergic reaction to the MRI that she had. We were sent by the eye doctor to Primary Children’s Hospital for a second opinion on her eye. She felt like something was pinching it because Horner’s Syndromes don’t appear overnight.

At the Moran Eye Center by Primary’s, the doctor performed a test that confirmed the Horner’s Syndrome and took a look at the MRI that we brought up from St. George. They found a cancerous tumor in her neck! A neuroblastoma. I still remember the shock I felt when the doctor came in and said that she had a tumor. A few days later, a repeat MRI was performed and the tumor showed signs of shrinking! We were to follow-up six weeks later. During those six weeks we returned to our Pediatrician in St. George with symptoms that concerned us. She was breathing incredibly fast and seemed to be tired all the time. She also was sweating while she ate and her feedings became really short and she seemed to not tolerate them for as long. He thought that she was fine and recommended we tell her doctors up at Primary’s when we returned. I was worried that the tumor had spread to her lungs due to these symptoms.

A week before we had her MRI, we went to the mountains for a day trip. Ellie immediately went lethargic and started to vomit. This greatly concerned us and we drove straight to the doctors. By the time we got there, her symptoms seemed to lessen. Once again, they didn’t seem too concerned. When we returned to Salt Lake, she again seemed to be lethargic and started to vomit. They did not want to do the MRI without General Anesthesia. So we met with our ENT the next day. He was greatly concerned with her rapid breathing and ordered a chest x-ray. What we found, changed our lives forever. Her heart was so large that is touched her left rib cage. We immediately saw a cardiologist. She was so fearful of her health that she wanted to examine her before she told us what was found. Ellie had a coarchtation of the aorta with a bicuspid aortic valve. A CHD that normally is fixed with surgery and can be fine without medications. Because it had gone so long, she developed severe cardiomyopathy, a leaking mitral valve, and an enlarged liver. She was immediately admitted to the PICU. That day a few doctors doubted that she would make it through the night. She did. and then the next and the next. Many test were done to see if all her other organs were in multiple organ failure. We were relieved to get the results that just her liver showed organ failure along with her heart. Her BNP levels were above 4000, which is extreme heart failure.

Two days later, they attempted to fix the coarch and because of her heart failure, the anesthesia stopped her heart. They aborted the surgery and went to the cath lab instead to do a stint. We were told by the surgeon that he did not think she would survive. She came out of it fine but developed a aneurysm in the aorta. She spent three more weeks in the hospital till they thought she was safe enough to go home. Eight weeks after her stint, she started to go down hill again and they felt that the time was right to do the coarch repair. This time her heart held up and she was released a week later after major heart surgery. She currently is on three medications a day to keep her heart going. We are living day by day to see if her heart can repair itself. Recently her injection fraction went from seventeen percent to nineteen percent and then a bigger jump after that. This is really promising since her December scan showed her heart getting worse. We were told then, that it was time to get a heart transplant. The next morning, our cardiologist called to say that her left ventricle showed some signs of shrinkage from a scan a few months previous but was not noticed from month to month.

Our current situation with Ellie is a waiting game for the tumor and her heart. She is not eligible for a transplant, until her tumor goes away and she is cancer free for a year. And her heart, as long as it continues to show improvement, won’t need a transplant unless she shows signs of diminished function. I can't tell you how grateful we are for our little girl and the life lessons she taught us. I hope Ellie's story gives other doctors and parents more awareness of CHD. We had no idea that her symptoms were screaming out. We saw many miracles during this past year. We feel very grateful that her life has been spared so far. I want to scream it from the rooftops to get awareness out there about CHD. We almost lost our daughter on several occasions and I don’t want one more person to go through what we went through. We have made many friends with heart moms that we have leaned on to help us survive. And have mourned those who lost their battle with CHD. With out her cancer diagnosis we may have lost our little girl to a broken heart. We still have a long road ahead of us, and hopefully the tumor will continue to behave itself, but we are so grateful for each day that we have been given with our little Ellie.

Ellie's Race!!!

We are so excited! The Utah Hero Foundation chose Ellie to do a race and a silent auction to benefit our family! The race will be held on September 18, 2010. It will be held in Farmington, Utah. For any of you who want to come and run, walk, stroll or roll in our 5k, we would LOVE to see you. There also will be a silent auction and booths after the race to also participate in. We feel so blessed to know and love so many of you. I can say that along with our Hevenly Father, so many of you have carried us through these past few years. We truly could not have done it without you. When people ask us how we are dealing with everything, my first thought is we have not done it alone. It is hard to express the love and the gratitude that we have felt through out this journey. This has taught me many valuable life lessons that will carry us through this life and the next. We have met so many new friends and been reconnected with old ones because of our hardships. It is amazing and at times overwhelming to know that you are cared for and prayed for by so many.

So feel free to grab a button and copy it to your blog. Also a few have expressed how they can help with the race or auction. You may contact the people from the Hero Foundation if your interested in donating an item or basket. My daughter said it best, "I hate that Ellie is a Hopekid because she is sick but at the same time, I love that she is a Hopekid because it has made our family special!"

Oh Poop! (literallly)

Well, it was one of those days! We had spent the week watching my friends kids while they were in Vienna Austria. (Lucky) They just happened to have three little girls. The youngest a year older than Ellie but still in diapers. Talk about the weight these little girls could accumulate between three of them. I would line them up when it was time to change their diapers. Size one, then two, then three. I stayed home the first three days because the thought of venturing out with seven girls under the age of nine was a little overwhelming.

By day four, we decided to go to a Birthday celebration for fun in the sun. The girls were insistent on a gift so I took on the challenge. What was I thinking! Did I really think this was a good idea? I pondered on the way there as to how I would execute my plan. I would pull up in front of the store and send the two nine year olds in to pick up a few gifts from Dollar Tree. That way I wouldn't have to trek all of them in the store. I sent the girls in at eleven. Soon they would be out, right? Well the first twenty minutes went by without a hitch. And then I smell it. Poop! I get and sniff to see who the culprit is. It's my friend's little girl. So I get her all changed up in the front seat of the van, put it in a bag and I get back in my seat to wait for the girls. They are taking their sweet time so I send Adrie in to hurry them up. Not the brightest idea I know. I can just imagine the girls pondering over the gifts to get with a little arguing on the side. I called Nate and was discussing that I may have to get the rest of the girls out if the girls didn't come out soon when I smelled it. I thought it was the diaper that I just changed, so I grabbed the bag and threw it in the trash can in front of the car. I got back in to smell it again this time overwhelming me. I turn around and let out a yelp. Ellie's hands are covered in poop! She had pooped, but the strategic way she was situated, it had missed her diaper completely! A pile of it (t.m.i. I know) was sitting in her car seat. I think she touched it and as it got on one hand had tried to get it off with the other and then used the car seat to try and get it off both hands in a matter of seconds. Her face expression was pure panic and she uttered the word "stuck". I sat there for a second while pondering how to tackle this job. I grab a plastic bag and a full brick of wipes and start in on the gigantic mess. wipe after wipe after wipe came flying out of the bin leaving a huge pile on the van floor. An older patron came out of the store to see the mess and gave me one of those looks like I was the plague or something. As if I would cause the situation on purpose or something. I ignored her rude glare and continued. Just as I was nearing the fiftieth wipe, the girls came out an hour later after they went in. So I put Ellie in the front passenger seat and told the girls to watch her while I finish cleaning the car seat. As Ellie was playing in the front seat, I hear the girls yelp at the poopy foot prints being stamped on the seat. (Some poop had gotten on her dress that I didn't see when I was changing her and then onto her foot and leg.) Frantic, I grabbed her and put her back in her seat to start cleaning the footprints. This is when the girls alerted me that poop was getting on the car seat again from the dress. I then cleaned the car seat AGAIN and finally learned that I had to get the dress off her. Ugh!!! So another fifty wipes later, we were finally on our way home only to hear Claire fill her diaper. At least that diaper didn't leak. Now I normally am not that scatterbrained but it was one of those days. I didn't ever imagine motherhood to be this way, but hey, I will take it. Mental note: don't call your husband for sympathy. He just laughed and said he was so glad he wasn't there. Which is probably true because if you know him, he gags over everything and I would probably be picking up after him too. (Just so you know, Nate helped me clean the car extra good later that night.) Also, I didn't think a picture was needed for this post.

Wordless Wednesday!!!

Wordless Wednesday!

How far we have come...

Ellie Marie a year ago today!
We all were supposed to be on a family trip to Aspen Grove. All my sister-in-laws and mom-in-law bravely entertaining the kids and keeping face while they were getting the updates of the day. Thank you so much for this. My girls needed you guys!

A few days later after they pulled the breathing tube.

(I apologize in advance for the extremely long post, but I needed to put it on record)

I can't believe it! A year ago today, we didn't know if we were going to see our little girl alive at the end of the day. It was such a hard emotional day, that I have yet to blog about it. I had intentions to document everything, but the events that took place last year, rival events from a made up movie.

We had been in the PICU for a few days already and were planning surgery for Friday. It was Thursday and Ellie was going downhill fast. She needed to have surgery as soon as possible. We were told that whoever got done with surgery first out of the three surgeons, that is who would be doing the surgery. Dr. Kouretas was the lucky man that drew the short stick. He came into our room and with my parents, Nate's dad (Nate's mom was entertaining the girls at Aspen Grove) and us, explained the dire circumstance that Ellie faced. We all followed her out of the room bawling. I remember seeing the other parents at their kids bedsides giving us smiles of sympathy and support as nothing was said as we made the march to the waiting room. We sat there waiting for our first visit from Bonnie the NP. She never came. The waiting room was full of parents at the end of the day waiting for anything from tonsillectomy to what ever. I remember feeling the look from other parents that they could tell our situation was far worse. I remember the phone would ring as a parent would be called to the counter to be told they could go see their child.

My heart sank, I look up to see a frazzled Dr. K come into the waiting room frantically looking for us. He spots us and asks us to meet with him in the consultation room. This was only about twenty minutes after they told us they were starting. This surgery was supposed to take four to six hours! Nate grabs my hand and as we were following him, he is squeezing my hand so hard it hurt. He goes on to tell us that her heart gave out during anesthesia. She essentially flat lined. They had to get her back with a shot of epinephrine.

It scared him so bad he decided to abort the surgery. He said she had no reserves left so when the put her under, that was the final straw that her heart could handle. They got her back and felt like the only option for survival was to do a heart cath to stretch it out and give her time to get better until she could handle the surgery. We gave them the OK. He then told us "I want you to be prepared that as week as she is, I don't think she is going to make it through the cath procedure."

As you can imagine, we didn't know how to react. He left. We cried. I sprawled myself on the couch and cried some more. Meanwhile, the family that was left in the waiting room didn't know what to think. They saw the doctor leave but we stayed. We stayed until they came to get us to see her before the cath. You can't think in a situation like that. Her eyes were fluttering. But she was there, weak but there. I felt an amazing calm come over me. I was feeling the prayers of so many loved ones comforting us. I left and could not take my eyes off my bracelet that I had been given by a dear friend. It was a yellow live strong cancer bracelet that they gave us after her cancer diagnosis. I kept thinking be strong Ellie, live strong.

We were given a pager this time and told to wait in the PICU waiting room. Nate and I had one of the parent rooms for sleeping in so as the family waited, I couldn't take anymore. I went in the room and pretended to sleep. My sister and mother-in-law got there after hearing how things were going. The cath was supposed to take two to three hours. At this time it was late. I could hear everyone talking in the waiting room. Then I heard the pager go off. It seemed to soon. Nate came in to get me and we hugged each other for a while and then went to the cath lab. Dr. Gray met us there, he was the one doing the procedure. His facial expression gave me a feeling of instant relief. I knew things had gone well. All I heard after that was like the teacher from the Peanuts cartoons. Wawa wawa wa. She had developed an anurism in the aorta from the balloon stint but everything else went really well. And best of all, she had survived!

We went back to the PICU waiting room and as soon as we walked in, Nate says, " it was a success." Cheers erupted from our family, so I apologize if you were trying to sleep in the rooms. It was really late. We were emotionally, spiritually and physically exhausted. We sat bedside for several hours watching her chest rise and fall and then rise again. She was bloated and hooked up to everything imaginable. We both went into our parent room crawled on the twin bed and crashed. What a day! What a year! What a miracle!

On the up and up!

Pure Happiness! That is all we need to get through Cardiology. She discovered that she can blow bubbles all by her self. And she succeeded too. Along with swallowing a few. Good thing they are non toxic!

Unfortunately, I had no more size three diapers and she needed to be changed. So luckily, I had a size one of Claire's. So we did what mom's do best and improvised. We managed to squeeze her into it.

This is after bath time. If you mention the word bath, she heads straight to the bathroom and will climb into the bath, clothes and all.

Lately I have been pulling out the camera and she knows exactly what to do. I get a "cheese" from her and several poses.

We had Ellie's cardiology visit last Wednesday. And the conclusion to that visit is that her heart is still improving!! Yeah! This is such a relief because it took seven months to start seeing any improvement. And in December, Dr. E said that she felt like a transplant was Ellie's best option but felt like she needed to be cancer free for at least a year before they would consider her for transplant. I feel very grateful for all the prayers and thoughts going our way because I feel that there has always been a higher power with Ellie. From day one the odds were against her. Dr. Buckman from Huntsman ran into my mom-in-law shortly after E was admitted last summer. (He was working with Dr. Park on her tumor.) She asked him if he had heard about her with the heart problem. He said that of course he had heard and that she was the buzz of the hospital. He said that it was so rare for a child to be faced with two non connected major things like that. I am so grateful that she is still with us today when the odds have been so against her. We have another heart appointment in July and then the dreaded MRI in August. Yuck!! That always comes around too quickly. I wish there was an easier way to look at the tumor. Somehow, we will take it a step at a time. Ellie is truly a living, breathing miracle. She and my other girls continue to amaze me everyday. I have really tried to end each day by saying to myself what special thing each one of them did or said. I love this quote that I found on another heart mom's blog...

"There are two ways to live your life - one is as though nothing is a miracle, the other is as though everything is a miracle ~ Albert Einstein"