Wednesday, April 28, 2010

Heart to Heart

Paul Cardall, Adrie and I. Thanks Ali for taking this picture. My forgetting to bring my camera to important functions is typical of me. (This was a week and a half after I gave birth to Claire so I was a little out of it still.)
Last Saturday, I had the wonderful opportunity to get together with some amazing women and man (Paul Cardall) at the Heart Mom's luncheon. It was so inspiring to be there. Paul Cardall's mom was the keynote speaker. (He is an adult CHD survivor of thirty seven years that recently recieved a heart transplant and a famous songwriter) He inspired me so much during this past year as we have dealt with Ellie's heart. At night I would stare out our hospital window, we had a great view of the city by the way, and be uplifted by his and other heart moms blogs. Just knowing that we were not alone in this journey helped us get through some rough nights. Paul's mom Margaret was a pioneer to the CHD world. It was amazing to hear her story and how it continues even though he is thirty-seven. My nephew, seventeen years ago was born with Pulmonary Stenosis so I was telling my sister-in-law how lonely it was for Paul's mom to not have a support group like this to lean on and blogs to connect with other moms. And she told me that it was that way for her too. I feel very blessed to have such a wonderful group of instant friends and people that just know. Thank you to Intermountain Healing Hearts and all those that put this on. It was a perfect day to meet and mingle with you all. And it was so fun to see familiar faces of the people we have met through our stays at the hospital and finally meet some of you that I have gotten to know through our blogs.

Saturday, April 17, 2010

Two Years in a Row!

Today is my husbands Birthday! He has to be one of the best dad's out there. He is truly one of a kind. This is his second Birthday in a row to be spent in the hospital for two different kids and two different reasons. This year we were here for Claire. We were hoping to go home today, but we had to stay an extra day because I contracted a chorioamnio infection during labor.

Exactly a year ago, we were in the hospital with Ellie, getting an MIBG. This was pre-heart diagnosis. After her tumor diagnosis, we had to do some testing to see if her tumor had spread to other places. We had a MRI previously during the week and had surgery scheduled for that following Friday to remove the tumor. We went to the hospital the day before to do labs and inject the radioactive die into her through an I.V. For anyone reading this that has to go through this, ask a bunch of questions, tell them to talk you through the process while the MIBG is going on, because it was a roller coaster of a day. During the MRI, the tumor appeared to be smaller than the previous one done in St. George. This test was to show if any of the cancer cells were any where else in her body. They also told us that if it had spread to her bones or her spine, than it was a very bad prognosis. We were already nervous for this test anyway, but after they put her to sleep, they allowed us to sit in the room and watch. The one thing that they did tell us is that the cancer cells glow and show up on the screen. So as we were watching the screen, all her bones start to glow and her liver is glowing brighter than ever. This test took about an hour and a half, and half way into it, I become physically ill to the point where I had to leave. I was at the end of my rope. I thought that that was it and we were going to loose our little girl to cancer two days after I was given hope. Nate and his mom stayed in the room but later my mom-in-law told me she was thinking the same thing and thinking that the cancer was everywhere. At the end, they showed us where the tumor was in her neck, which was lit up, and that her liver was filtering the die and that is why it was showing up in her stomach. Her bones also attracted the die but it had to be solid to show cancer cells. So after we met with the doctor's we felt more relief when they told us that the tumor appeared to be contained in her one spot in her neck and that it indeed had not spread. PHEW! Maybe, this should be one of those tests that they should have you wait outside until they get the results back. They took Ellie's case to a national conference board the next day and they decided to cancel the surgery. They felt like her tumor had regressed enough and thought that it would be better to watch it and see if it regresses away completely. Because of where it is located, they decided that this was the better option and retrieve the tumor if it began to spread. I liked that they had a conference with about ten doctors nationwide to come up with her path of treatment. It made us feel at ease with their decision to cancel the surgery. Anyway, it was a roller coaster of a day but somehow we survived it and many more days like this. Retelling this day has brought back a flood of emotions but we ended on good note. Nate felt like this was all he needed for a birthday present. Cancer contained, surgery cancelled, a good day after all.

Friday, April 16, 2010

Baby Cason

We all could use some hope!

On April 14th at 5:15 p.m. we added Claire Hope Cason to our family. She was a chunky 7 pound 13 ounces.

We have had Claire checked and checked again for signs of a heart problem and so far things are looking good. We will do an echo in about two months.

The girls loved seeing her. Even Ellie was happy to see her. Ellie was nervous and did not like to be at the hospital. Can't blame her though.

Becca let me go to the movies and to get a bite to eat with Josh for my Birthday. Thanks Becca it was nice to get a break from the hospital.

Posted By Nathan Cason

Wednesday, April 14, 2010

And then there was one more!

Are we ready? I think we are. Ready or not she is on her way. We came to the hospital this morning to get started and while I was getting checked in, my water started leaking. She was meant to come today whether we are ready or not. Anyway, being here, I anticipated more of an emotional response. But so far, I am staying calm. When I gave birth to Ellie, I started crying the second I got to the hospital. After our experience giving birth to our stillborn Eve, you long for a birth that has a good outcome.
These pictures were taken the day before her heart surgery. When you go through something like this as a family, you have some amazing friends and family come out to be of help. Our friend, Shana Whipple took these awesome pictures that we truly cherish. We weren't sure how the next day would end, so we were truly grateful for her donated talent and time for our family.

The girls!!! Ellie knew something was up. We were able to get some prego pics the night before so I will post some as soon as I can, along with some newborn pics. So after feeling all these emotions, we are ready! I am excited to meet this little baby that has spent so much time waking me up at night and making me spend so many trips to the bathroom. Here's hoping all goes well, with a healthy heart to go with it.

Sunday, April 4, 2010

A Blessing For Mason!!!

We have absolutely wonderful news for one of our heart friends! He and his mother have been in California waiting for a new heart. His Dad and his siblings came into town to spend the Easter Holiday together. Last night they got the blessed call that a heart was waiting for them. And today, on Easter Sunday he is receiving his new heart! To have his family their right now is such a blessing. I can't begin to explain the emotions as a fellow heart mom that I have right now. My Bishop gave me a blessing once right after her cancer diagnosis and afterwards explained to us that Jesus did not just die for our sins but for our burdens that we are carrying also and for our pain and suffering. This is a miracle and on Easter Sunday.

Please remember them and the family that is suffering so much during this time. What a special gift that this family gave them and many others. My heart aches for them right now. We know what it's like to bury a child. It's the many prayers that were said on our behalf that got us through that very difficult time in our lives.