Monday, December 16, 2013

With Hope, The Odds Don't Matter

I've learned the importance of raising awareness. If nobody knows about it, then how can you receive or give help? 
Growing up with cousins who had cystic fibrosis was an easy way for me to become 'aware' of the illness. And now that my own daughter has it, I am even more 'aware' and I have an even greater desire to raise awareness about cystic fibrosis. 
Cancer seems to be something almost EVERYBODY knows about. I've lost so many.... too many, friends to this awful killer. Each one was different. Each 'Killer' was different and I became aware of them because they had taken someone from me. 
I hate cancer.

But..... I have learned the importance of awareness, and what a powerful tool this can be to even just one person. 

I have friends who have beat the odds with cancer. Because someone, started raising awareness, at one point. And through that more people started learning and helping and saving. 

In the cystic fibrosis community I have personally seen the changes and progress awareness has helped create. 

I recently became 'aware' of a different type of cancer I knew nothing about. I would like to share one survivor's beautiful story of hope. 

Her name is Heather. 
In 2005, at the age 36, and only 3 months after giving birth to her daughter, she was diagnosed with pleural mesothelioma. She knew she needed to find a way to beat the odds for her husband and newborn. 
Asbestos is not banned in the US, yet it’s the only known cause of mesothelioma. Once diagnosed, most patients die within 2 years.
It has been almost eight years and she has dedicated her life to spreading awareness of this awful 'killer.'

Please take a moment and click here to watch a short clip on her story..... Help us raise awareness.

Help us share hope.

With hope, the odds don't matter.

Monday, November 18, 2013

I am grateful for CF.... Wait?! What?!!

Yes that's right, I'm grateful for my daughter's disease that I despise with every fiber of my being. Makes no sense right?

Well, I had a really crappy appointment with Molly's CF Specialist this past friday. She seems to be doing ok but her weight gain was only and ounce and a half. Booooo. They aren't too worried about it but that wasn't even the tip of the scale this time. Remember how in my last post I mentioned my worry about insurance not covering her medications? Well.... So it begins. I've been using samples that they have been giving me and haven't needed to fill any perscriptions yet. Except her inhaler. She has been starting to get super 'rattly' in her lungs. Not horrible. But just more noticeable. I mentioned this to the Doc. She decided to be proactive and start her on pulmozyme. 

Here is a little info:
Pulmozyme® is an inhaled medication used to treat the symptoms of cystic fibrosis (CF). It helps thin the mucus in the lungs so people can cough it out more easily.

Pulmozyme, along with other CF therapies, improve lung function in people with CF. Taking Pulmozyme every day has also been shown to reduce the risk of lung (respiratory) infections.
Pulmozyme acts like “scissors” in the mucus. It cuts up the DNA strands outside the cell that can make CF mucus thick and sticky. This DNA is from the white blood cells that work to fight lung infections. Even if a person with CF has not had a lung infection, the white blood cell DNA is still in the mucus.

So a 'typical' CF treatment goes like this:
1. Bronchodilator - like albuterol inhaler
2. Mucus thinning medicines, like Pulmozyme
3. Airway clearance-like chest percussions
4. Inhaled antibiotics

Pulmozyme is something that is going to be part of her survival in life. Even with this drug, CF will continue to damage her lungs but this drug helps extend the health of her lungs. Well.... my insurance doesn't cover it. They don't even cover the machine (nebulizer/compressor) in order for her to take the drug. They also don't cover her vitamins. Common seriously. Vitamins people!!! I'm waiting to hear back to see if I get my 'special' approval. These are things she needs to survive. These things are not optional, and they aren't covered!!! This is wrong, and it's only the beginning. I.... We are going to be constantly battling 'the system' trying to get the things she needs for survival. 

As I was sitting there in the parking garage of the hospital, having just left their pharmacy empty handed, I just sat and cried. I was being slapped in the face, again, with the reality of CF. Its such an ugly, horrible, cow pie and bologna sandwich, stupid disease. I drove home with this dark cloud full of thunder and lightening, just hovering over me. How? What? How? Why? When? Why? What the heck? So many things storming in my mind. 

Wait.... And your grateful for CF?!

Why yes I am! Let me tell you why. 

I teach Relief Society in my ward and it was my week to teach. I had been going over my lesson but had been struggling with where to go with it. So I kept putting off writing it up. Saturday, I decided instead of staying home and working on my lesson I would go help my friend who was in desperate need. I love this girl. Seriously. She's an amazing mom and friend. She has some major trials going on and I was ever so happy to go and help, even just a little. I left her house that night feeling on top of the world. Serving had put some of my broken pieces of me back together. And what do you know... That's what my lesson was on. Doing good in the world. Serving one another spreads happiness. It makes the person your are serving happy and in turn it makes you happy. We get so wrapped up in ourselves sometimes and forget that the best way to be happy is by serving others. 

Our happiness increases when we help others find happiness.

We should have before us a strong desire to do good to others. Never mind so much about ourselves. Good will come to us all right if we keep our minds outside of ourselves to a certain extent, and try to make others happier and draw them a little nearer to the Lord. … When you find yourselves a little gloomy, look around you and find somebody that is in a worse plight than yourself; go to him and find out what the trouble is, then try to remove it with the wisdom which the Lord bestows upon you; and the first thing you know, your gloom is gone, you feel light, the Spirit of the Lord is upon you, and everything seems illuminated. -Teachings of Lorenzo Snow, Chapter 22
So what does this have to do with CF? I would've never learned this lesson if it wasn't

for my daughter's CF. I would have never noticed the difference in my happiness or how to get my broken pieces back together if it wasn't for the experience I had at the hospital the day before. I am being forced to grow, wether I like it or not, and it's because of my children. The Lord is working through them. Especially my sweet little Molly. I am grateful for Molly because she is a major blessing in my life and I wouldn't want her to be any different than she is now.

So yes..... I am grateful for Cystic Fibrosis.

Not even 3 months! She's such a strong little girl! 

Sunday, September 29, 2013

Sweet Memories

We blessed Molly today. It was such a sweet and special day. I was worried I was going to be an emotional wreck but I held it together. It was so awesome being surrounded by friends and family. I thought I would share a sweet little experience from the day. Chase did a wonderful job with her blessing and I felt at peace while he talked. After the meeting, as we were all walking out the door I was stopped by my bishop. He told me that while Chase was talking and said he blessed that she would be able to overcome and fight off any infections and illnesses, Molly opened her eyes and smiled. This melted my heart. I know that she will get sick eventually and it will probably get scary at times. But this little memory will be with me always and help me get through the burden of having to watch her fight. She is strong. She is a fighter. And she know's it.

Many people asked me who she looked like today. I think she mostly looks like Kael with touches of Claire. Here are some comparisons..... You be the judge.

 Molly's Birthday

 Claire's Birthday

Kael's Birthday

Molly One Week

Claire One Week

Kael One Week

 Molly's First Bath
Claire's Firtst Bath

Kael's First Bath
Molly One Month
Claire One Month
 Kael One Month
Kael's Blessing 2008

Claire's Blessing 2010

Molly's Blessing 2013

Tuesday, September 24, 2013

The Turning Point

We've reached a turning point in our lives... one that effects the entire family. Not so much a good thing but a turn we have to take. Molly was diagnosed with cystic fibrosis at only one week old. I'll never forget the moment when that devastating news was delivered. Molly had been up most the night and my sweet husband took her and the other kids and kept them busy while I grabbed some sleep before he had to leave for his morning class. He came in and gently woke me while he told me the doctor called and said Molly has CF. I bolted up and exclaimed, "What?!" Praying I had heard wrong. He repeated it again with sadness in his eyes. I broke down and sobbed because I knew this was a turning point. I knew that my poor little girl was going to have to fight for her life everyday. Nothing was going to be the same for her or anyone else in our little family. I have personally seen how this disease can consume a persons life and I didn't want my baby to have to go through this. Most of that day I just cried and felt sorry for Molly and the life she was going to have. The next day I decided that being sad wasn't going to help anybody. My kids needed their mom to be strong, especially Molly. We met with the her CF doctors at Phoenix Children's Hospital a couple days later started her on enzymes and vitamins. They made sure when we left there we understood what CF was, how it affected Molly and how to take care of her. I left there feeling overwhelmed but comforted. I know that this illness can be so ugly at times. But it can also be a great strength to her and she can go on to have a normal life. Cystic Fibrosis is a part of her and our lives now but it's not going to dictate who she is.

Molly has been my unique baby from day one. In the beginning, I had some spotting and thought I was going to miscarry. Then I had round ligament pain that was so awful that I went into the ER because I didn't know what it was. I made it the rest of the time with no more complications and felt pretty good. That ninth month I was so tired of being pregnant for sure but I wasn't completely miserable like I was with the others. We didn't know the gender of the baby so that was super exciting!! The day before I had her, I was having some contractions that were about 10-5 minutes apart. I knew they were real contractions but was still worried that they were going to go away like they had been doing. But they stuck around all day and into the night. I woke up that morning still having contractions and needed to use the restroom. I was lazy and didn't want to get out of bed yet. Can you blame me, it was 5am. Still in a fog, I felt a 'pop' then a small gush. I thought, "oh crap, I think my water just broke!" I sat up and more 'gush'.... Oh yeah, I definitely think it broke. I ran to the bathroom, still thinking it might just be me peeing my pants. Sat down on the toilet and BIG gush. Yup that would be the rest of the 'water' so I hollered at Chase from the bathroom that my water had broke. He bolted out of bed and started getting ready. I was kind of disappointed because my other labors were so long and I didn't want to sit at the hospital forever again. I noticed now that my contractions were getting stronger and closer together. I figured I would take a shower, get ready then call the doctor. I called my mom to arrange to drop off the kids then I finally called the doctor. She of course said that she wanted me to go in and check to make sure the baby was doing ok with the contractions. I still took my time but noticed that the contractions were getting pretty strong. Once we were finally loaded up to go I was having a hard time breathing through the contractions so we rushed to my mom's to drop off the kids. My mom took one look at me during a contraction and said you better get your butt to the hospital. She knew I was going to try and do this drug-free but I was having a hard time and it had only been an hour since my water broke. We hurried on our way, but when we got to the freeway it was packed with traffic. I was trying so hard to focus and breath through the pain. I was doing ok until about halfway there. I told Chase I don't know if I was going to be able to handle another 10 hours of this pain. About five minutes from arriving at the hospital I could feel the baby moving into my pelvis and the contractions were now about 45 seconds to a minute apart. I was in transition but didn't know it. I was crying telling Chase there is no way I'm doing this drug-free. I was panicking and not handling the contractions well. I thought I was going to hinder my body from progressing and I knew I was causing myself more pain by not staying calm. As we pulled up to the door I told him just to park by the door so we could run in, I was just finishing a contraction and wanted to get in there before another one came. As soon as we got to the front desk another whopper hit and I dropped to the floor. Trying to rock my hips and keep calm. I could hear people in the waiting room shouting encouragements because they knew I was in the zone. Poor Chase didn't know what to do, he didn't want to leave me but knew we needed to grab somebody quick. I just told him go get somebody. A doctor walked over and asked what I needed, Chase ran up and said they were coming with a wheelchair. My contraction finished and they helped me up. I said screw the wheelchair just get me to the room. So we waddled to the room and I asked to get in the shower. They said no because they needed to check me and monitor me to see what was going on. I just kept thinking I still have forever I just need to shower to calm myself down. They got me on the bed and checked me real quick between contractions, I was at an eight. I asked for drugs and they said no. Then I begged for a shower and the kept saying they needed to monitor me longer. I had one nurse who yelled at me the whole time trying to tell me what to do and I just yelled back and told her no. She wanted me to just lay on the bed while they tried to hook me up to everything. That was not going to happen!! The other nurse I had was wonderful and she stayed calm and let me do my thing. She told me things to help me focus and worked with me. They kept trying to do my Hep-loc but my contractions were so close together that they were worried I was going to blow it. Finally they got it in but I started feeling pushy. They panicked and told me how to breath through it because the doctor still wasn't there and I would lay down so they could check me again. Finally the doctor showed up and she checked me between a contraction and said I was a ten. Because I had begged for some kind of pain relief they were waiting for the "epidural doctor" to come but he was still wasn't there. My doctor said I was ready let's turn over and start pushing this baby out. This whole time I felt like my brain was no longer with my body. But some how I was able to focus enough to lay down and start pushing. I just remember the contractions were awful but the pushing was such a relief. I just tried so hard to focus on my pushing because that was all I could do. I pushed for 20 minutes and the epidural guy finally showed up. He was no longer needed, I was doing it. I was still in disbelief. But I was pushing my baby out. I finally got her head out and they said one more push and your done. As they pulled her up, I opened my eyes and saw her for the first time. I saw that she was a girl and shouted that out. Everybody laughed and said they forgot to check. They confirmed she was a girl and laid her on me. I was still in such a daze and could not believe that I didn't end up with surgery! She was a tiny 6lbs 9oz and 18 inches long. She looked just like her brother. I looked at the clock and she was born at 8:57am. a mere 4 hours of labor and only an hour and a half of it was at the hospital. It was a crazy intense experience but totally worth it.

I got to be there for her first moments, joking around with my awesome nurses, watching her get her first bath and talking with my honey. We called all the family and let them know we had a girl. We thought about what we should name her and then decided on Molly Jean. 24 hours later I was checking out and on our way home.

Here we are almost a month later and life has changed drastically. Life with a newborn is busy but add in the CF and it makes it even busier. Before every feeding I have to give her enzymes with applesauce, I have to make sure she gets salt each day and extra vitamins. This last week, we started doing her percussions. Once she's a little older we will need to add in the breathing treatments.

Life with a CF baby has been crazy but I wouldn't change it for the world. We love our little miss Molly and are so excited to see her grow.

First Bath

With Dr Sally

Meeting her big brother for the first time

Girl Power

Family of FIVE!

Big sister

Best Friends

First bottle

One Week Old

First Bath

First Story-kid wanted to read a story to her

Two Weeks Old

Three Weeks Old

Tiniest percussor I've ever seen!!

First matching outfit - We love minnie mouse!!

Last Summer Swim

FHE at the temple

So glad that families are forever!!