Awareness post: Mesothelioma


On average, people diagnosed with Mesothelioma are given 10 months to live.
That’s 300 days.
300 days to make the most out of your time with your family. To see sites you’ve dreamed about and to experience things that have been gathering dust on your bucket list.
In honor of Mesothelioma Awareness Day, I’m sharing the story of Heather and her fight against this disease. In 2005, just months after giving birth to her daughter Lily at age 36, Heather was diagnosed with pleural mesothelioma (affecting the lung’s lining in the chest cavity). She is believed to been exposed to asbestos when she was a young child, almost 30 prior, when her father worked around asbestos.
She was given just 15 months to live.
She and her husband immediately went out to find the top specialist in mesothelioma cases, and soon they found Dr. Sugarbaker, a renowned surgeon in Boston’s Brigham and Women’s Hospital. Heather was put through a ring of tests to see if she qualified for surgery, and two days before Christmas in 2005, she underwent the intense surgery to remove the lining of her lung, her left lung, 6th rib, half of her diaphragm and the lining of her heart. After recovering from surgery, a couple months later she started chemotherapy. After a few months of chemo, she then started radiation therapy and underwent an astounding 30 sessions and finished just under a year after her symptoms first appeared.


It has been 8 years since Heather’s diagnosis and she can happily say she is a survivor! She continues with checkups every 6 months, but thankfully has stayed cancer free! She has made it her mission to spread awareness and help others going through their own journey with mesothelioma.
You can watch more of her story here: http://www.mesothelioma.com/heather/
Mesothelioma is an aggressive cancer that attacks the lining of the body cavity called the mesothelium. The only known cause of mesothelioma is exposure to asbestos. The terrifying fact about asbestos is that “on average, 30 million pounds of asbestos are still being used in the United States today. The substance can still be found in many homes, schools, and commercial or industrial buildings. The EPA estimates that there are asbestos containing materials in most of the nation’s approximately 107,000 primary and secondary schools and 733,000 public and commercial buildings.”
Mesothelioma is hard to diagnose because the symptoms can be mistaken for something else, or are too subtle to accurately diagnosis at first. Symptoms can take from 10-40 years to appear after exposure; it is very important to talk to your doctor if you know/believe you have been exposed to asbestos and to see a specialist.
While there is no cure, treatments typically include surgery, chemotherapy and radiation therapy. Surgery options are to remove the tumor, or to remove the lung itself. Sadly, there is a high chance the tumor will reappear after removal since it is very hard to remove it entirely, without taking the lung, so usually surgery is accompanied by radiation therapy.



Asbestos is STILL NOT BANNED in the US!


Symptoms include:
·         Shortness of breathe, muscle weakness
·         Lower back pain, side chest pain
·         Coughing up blood
·         Weight loss, fever, fatigue, persistent cough
Facts:
·         Mesothelioma can sit dormant in the body for 20-50 years after exposure.
·         It is commonly diagnosed between the ages of 50 and 70.
·         You can be exposed second hand from a family member who works in an asbestos affected workplace.
·         Asbestos remains the number one cause of occupational cancer in the US.
·         NO amount of exposure to asbestos is save.
·        


If you live in a home built before the 70’s,
please have it checked for asbestos!!

If you would like to contribute your voice to this cause, please visit:


Newborn screening month- raise hell

There are 11 days left in Newborn Screening Awareness month! Have you bought your shirt yet?


Where are all those people who said "If you need anything, just let me know" or "let me know anyway I can help!". Where are those people?
We really need your help to reach our goal of 100 shirts. This isn't a fundraiser just to raise money for the heck of it..this fundraiser will benefit one of the top newborn screening organizations in the country and help save lives! Your t-shirt purchase saves babies. What are you waiting for?


I've been in the advocacy world for almost 4 years now. It doesn't get easier. I always feel like a bit of a nag and annoying, but I DON'T CARE. 

If we are silent, who will speak up?


I could say I'm sorry for saying the same thing over and over...that I'm so sorry I've interrupted your casual facebook scrolling with the public service announcement, but there always needs to be that person who raises hell to change the world. 

So I'll ask again, what are you waiting for?

Visit www.booster.com/savebabies to help change the world.

Newborn Screening Month: Fact 3

Pulse oximetry screening is a type of newborn screening. It can help detect the number one birth defect in newborns: congenital heart defects, or CHDs. 

What is pulse ox?

Pulse oximetry is a painless, non-invasive screening that measures the amount of oxygen in the blood using a small sensor attached to a band. The band is wrapped around baby’s hand and foot, the sensor detects the percentage of oxygen in the blood, and the results are compared to see if there is a possible problem.

Why is this important?

Pulse ox screening is important to know about because it is not mandatory across the US yet. A lot of states have added it to their screening panel, others are working on it, and a few still have work to do on the issue. It is important for parents to ask about the pulse ox screening in every state!
Visit www.cchdscreeningmap.org to see where your state stands on pulse ox screening. 

Here is a great video that explains more:





More questions?

Visit www.pulseoxadvocacy.com


What is newborn screening?


Wondering what exactly is newborn screening?


Newborn screening is a state public health service, that varies by each state, requiring every newborn to be screened for various disorders and conditions via blood spot testing, a hearing screening, and (in most states now) pulse ox screening. This program is set up to help catch those life threatening conditions before they turn fatal. It's incredibly important to follow up with your child's doctor about the results as time is of the essence.

Click on the map to see what your state screens for!


Watch this video by Save Babies through Screening Foundation on newborn screening and why it is so important..


Visit www.savebabies.org to find out more, and please share!



Newborn Screening Awareness Month

 Feel free to download these photos and share them across your social media sites. Be sure to add #newbornscreening if you're into hashtags :)

September is Newborn Screening Awareness Month! It's a time for all parents to band together, no matter what their cause is, and advocate for one of the most important programs in the country: newborn screening. Thankfully pulse ox screening has been added to many state's newborn screening programs and we can rest a little easier knowing that heart kids across the county aren't going home un-diagnosed. 
So let's kick this month off with a bang and spread some awareness!!

We all know about Facebook and Twitter, but don't forget that Instagram, Pinterest, and Google+ are great social sites as well!

You can follow my posts at the following:
Facebook @The Corbin Story
Twitter @CorbinsHeart
Pinterest @CorbinsHeart
Instagram @CorbinsHeart

You can find more information and graphics to share at the Save Babies through Screening Foundation websites:
Facebook and Google+ @Save Babies Through Screening Foundation
Twitter @ScreenBabies

Save Babies is also having a fundraiser during the month of September to honor all the babies saved by newborn screening, as well as a way to help spread awareness. It's a wonderful way to help a great cause and get your friends and family involved! Check out the t-shirt fundraiser at: www.booster.com/savebabies, and don't forget to share!






More then a holiday

Father's Day has many reasons to different people. It's a day to thank you father for being there, being supportive, loving, and for teaching you those lessons that do not come easy for a parent.

For loss parents it has a whole new meaning.

A day to celebrate being a dad..but what if your child isn't with you anymore? It's a very painful reminder of what you have lost and what you will never be able to celebrate with that child anymore.
My husband deals with his grief in a totally different way then me but I know that he feels those same painful emotions on days like this.

That is part of why I wanted today to be the day we revealed the gender of our third child. Our rainbow baby. I didn't want to overshadow Corbin's memory, but instead to include him in our special occasion. It felt like our whole family was here to share the excitement and joy. I know he was there.

This day has been long awaited. Many, many heartfelt prayers have been said, tears have been shed, and our hearts have broken with each negative pregnancy test. We feared that maybe...we weren't able to have another child. That Monkey would be our child to hold, and Corbin our child to hold in memory. I cried with disbelief when I saw the positive pregnancy test, and I cried today when our child's gender was revealed. Not out of sadness or disappointment, but out of pure disbelief and awe that it was really happening.

It's a very conflicting feeling...to be so full of joy for this new life, but hesitant to celebrate too much based on the fear and knowledge of what could go wrong. We do not dwell on those fears, but we do not ignore them either. We cannot ignore the knowledge that we have gained from Corbin. It was a painful lesson, but one I will never forget or be regretful for.

We were joined by family and close friends for our celebration, and thankfully my brother and parents were able to watch through video chat.

There was pink and blue lemonade...


I was so thankful that my brother and parents were able to video chat in and see the whole thing!


Monkey was excited to see his uncle.


All guests voted and we also took an online vote to include our dear friends that couldn't attend. It was fun to see how many participated and who stuck around, waiting for the results! We also had everyone write down what they thought we should name the new baby. 


We represented Corbin with his footprint box and the little lamb that kept him company in the hospital.



After we voted on boy or girl and names, we went outside for the balloon reveal.

I was calm and relaxed till the moment I saw the box, then I had a little freak out moment before I was able to go outside and actually look. 





 Here I am trying not to hyperventilate! 


Me about to hyperventilate...


...then breaking down into uncontrollable sobbing. I had to look and concentrate really hard on the balloons because I literally did not believe my eyes that they were pink!!


Watching as some of them flew to the skies to play with Corbin





It took me awhile to calm down before I came back out for the last picture. 


We're having a girl!!


Happy Father's Day to my husband. I really do not tell him as much as I should how much I love and appreciate him. I never thought I would be blessed with three children and I am SO happy that we have built this life together. Thank you baby for our life, our beautiful babies, and for staying with me through the hardest time of our lives. You are THE best and most wonderful father. I love you forever and always. 


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