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Monday, April 30, 2012

Lia's story

I met Lia in 7th grade when we discovered our mutual love for the New Kids on the Block. (some things never change) :)  While observing what Lia has endured in the past year and a half, there have been numerous times when I wished we could go back to those simpler days when our biggest concern was whether Jordan or Donnie was cuter.

Lia at 39 weeks
On February 3rd, 2010 Lia and her husband learned they were expecting a baby due on 10-10-10. Lia’s pregnancy was uneventful and they were beyond excited. On 10-11-10 they went in for a regularly scheduled appointment, but this time things were different. The doctor could not find the baby’s heartbeat. After several frantic moments, they realized that their baby was gone. They decided to find out the gender. It was a girl.

Sofia's footprint
As if this wasn’t enough, Lia still had to deliver the baby. She was induced and 17 hours later Sofia Rose was delivered weighing 6lbs 15.6 oz and 20 inches long.  There were no clues to explain the cause of Sofia’s death, which is fairly common in these situations. Lia and her husband held Sofia and then had their family members come in so they could do the same. Lia said, “It is so hard to see a baby that way. She should have been crying, not us.”

When she first arrived at the hospital, Lia asked her sister-in-law to contact an organization called Now I Lay Me Down To Sleep that provides remembrance photography for families of babies who do not survive.  Lia had been doing some newborn photography as a hobby and had looked into volunteering with the organization a year prior. A photographer arrived shortly after Sofia was delivered and took some beautiful portraits that Lia and her husband cherish.

In the weeks following Sofia’s death, Lia started blogging about her experience. She found that it was not only a good way to share her story, but also to cope with her grief. Writing about her experience allowed her to work through some of her emotions and also helped friends and family gain a better understanding of what she and her husband were going through.

Lia and smiley Rose
Lia has been very open about her experiences and has found that that is not always the case. She said, “infant & pregnancy loss is such a quiet topic yet it seems so common the more I talk to people about it.” Lia got pregnant again several months after Sofia’s loss, but had a miscarriage in the first trimester. Happily, she and her husband welcomed a healthy and very smiley baby girl to the world on January 20 of this year named Rose Maria.  Now, when people ask how many kids they have or if Rose is their first child Lia always includes the babies they have lost because they are part of the family too. This often catches people off guard, but she has found that many people have had similar experiences. She hopes that her openness will help open dialog for others.

Family walking for Sofia
Lia’s openness and strength has already inspired many. One person on Facebook commented, “ have more strength than all of us put together I think.” Lia credits her faith, family, and friends for giving her strength and hopes to continue to help others. She hopes her blogs help mothers who are going through similar situations feel a little less alone and may write a book in the future. (I think she should!!!) She and her husband also participate in the March of Dimes March for Babies to raise money and awareness. In fact, this year’s walk was yesterday and little Rose was able participate!

Lia is very clear that the loss of Sofia will always be difficult and will never be forgotten. Her strength through everything she has endured has come from a desire to remain strong for their future.  “We wanted to have a family and while we will never get over our loss, we do want happiness and hopefully we will figure out how to balance it all.” She encourages others going through similar circumstances to be honest with themselves and not be afraid to ask for help. Lia also encourages them to set small goals for each day, even if it is just taking a shower. She found this to be helpful on days when she emotionally had difficulty getting out of bed. Lia said, Most of all, I want people to know that even though it might not feel like it at the time, they are stronger than they realize and they will make it through.” 

You can support Sofia Rose’s March of Dimes team by clicking here.

Thursday, April 26, 2012

Erin's story

At 21, most people feel they are just getting started with their lives, but this was not the case for Erin. Instead, she found herself fighting for her life. A simple visit to her family physician about a lump above her collarbone ended up in a terrifying diagnosis: cancer. Initially, her doctor thought it was a cyst and suggested monitoring it for 6 months, but 2 weeks later Erin had a strong feeling that the lump needed to be removed and convinced her doctor to do so. Her doctor said he would contact her in 2 weeks with the results, but instead she received a call 2 days later asking her to come into the office. She knew something was wrong.

Erin’s mom and best friend accompanied her to the appointment, but she went into the exam room by herself to hear the unthinkable: Hodgkins Lymphoma. Erin went numb and could barely speak. The doctor encouraged Erin to go get her mom. “That was the longest walk to the waiting room.  The minute I opened the door, I just looked at my mom and cried, more for her than myself.” All she could think about was how much this was going to hurt everyone around her.

Understandably, Erin had difficulty accepting her diagnosis and slipped into depression.  For her, the word “cancer” meant she was going to die. She hit bottom when she received a DWI two weeks after her diagnosis. This was a real eye opener for Erin. She said, “What was drinking going to do?  Cure my cancer? Solve all of my problems? No, none of this.  I needed to step up and accept this battle and be ready to fight!” And that is what she did.

Before a treatment plan could be designed, Erin had numerous scans, blood tests, and a bone marrow biopsy to see if the cancer had spread. These tests showed some activity down her sternum, so it was decided that she would have 8 weeks of daily radiation on her neck, down her sternum, and her armpits. You can see where the darker skin was burned from the radiation and peeled off to the lighter skin in the picture of Erin during her treatment. She was given two small dot tattoos to line up the radiation treatments. These tattoos are constant reminders of her battle and can also be conversation starters depending on what shirt she wears.

Erin credits her family and friends with getting her through her “hard battle”. Thankfully, Erin has been in remission for nearly 12 years, and she is happily married with two adorable children. However, she is forever changed by her experience. She knows her risks for other cancers in the areas that were hit by the radiation are higher, so she pays close attention to her body. This heightened awareness also carries over to her children.
Erin’s advice to others is simple: “Always trust yourself; you know your body better than anyone else does! Never be afraid to ask questions and always look out for the best interest of yourself.” She hates to imagine what could have happened if she had waited 6 months like her doctor had originally suggested.

Saturday, April 7, 2012

Happy April 7th Day!

Today would have been my mom's 69th birthday. My mom hated her birthday (and really anything that caused people to make a fuss over her) so we called it April 7th Day instead. After losing my mom in 2006, April 7th Day was always tough until last year when I decided I would honor her on this day instead of mourning her. It's definitely what she would prefer!

So, today I am starting Unite Out Loud, a blog where I will share stories of inspirational women who have faced enormous challenges and tragedies with courage and strength. My hope is that these stories will encourage and inspire others in their times of need.

The idea for this blog came from my own experiences. My mom and three aunts all fought courageous, but ultimately losing battles against ovarian cancer. When my mom was diagnosed she tested positive for the BRCA gene mutation, which increases the chance of getting ovarian cancer by 40% and breast cancer by 60%. In May of 2007 I was tested for the gene mutation and learned that I also had it. Initially I was terrified, but I quickly moved into action to figure out what I could do to reduce my risk. I had already been participating in Northwestern University's Ovarian Cancer Early Detection & Prevention Program because of my family risk, which meant an exam, ultrasound, and blood test twice a year. My husband and I met with a genetic counselor and doctor at Northwestern to talk about my options. I could either be aggressive by surgically removing my ovaries and breast tissue, or less aggressive with regular screenings. If I went the screening route, in addition to the ovarian cancer screenings I had been doing, I would also need to do breast cancer screenings every three months, alternating between mammograms, physical examinations, and MRIs. I am a worrier by nature and knew I had to be aggressive. I felt like I was a ticking time bomb and needed to do something to diffuse it.

I decided to do a prophylactic double mastectomy which would reduce my risk of breast cancer by 90-95%. It was a drastic step, but the best choice for me. A few weeks after I decided to go with the surgery, I learned that my second cousin, who is the same age as me, had been diagnosed with breast cancer and was undergoing treatment. This only strengthened my decision to undergo preventative surgery.

I found a wonderful breast surgeon and plastic surgeon at the University of Chicago, who could do the removal and complete reconstruction all in one surgery, which was very important to me. I had never been in the hospital, let alone had major surgery and was very nervous about the whole process. Dr. Song's nurse put me in touch with a former patient to get a patient perspective. This is where I first experienced the immense power of other women's stories. Hearing her experiences and being able to ask her questions was extremely helpful and comforting. I began to seek out additional women who had been through similar procedures. My genetic counselor recommended an amazing organization called Bright Pink that is focused on young women at high risk.

After I had connected with women in similar situations, I felt more empowered than scared. I felt so lucky to have this information about my risks and options to reduce my risks. These were options that my mom and her sisters did not have. By the time I went in for surgery, I was ready! The surgery lasted 8 hours and went well. After hearing so many horror stories about hospitals, I was pleasantly surprised by the care I received during my two day stay. I would not describe the week following my surgery as the best week of my life, but it was manageable. I just kept focusing on the women like my mother who had and were currently fighting cancer, and knew that any discomfort I felt was nothing compared to what they dealt with.

I cannot fully express the impact that connecting with women who had faced similar challenges had on me. It not only alleviated concerns, but also helped me to feel like I was not alone. My experience would have been much more scary and lonely without them!

My hope is that this blog will help inspire and support anyone who is going through a difficult time. Even if the circumstances are not the same, I believe we can gain perspective and strength from the courage and experiences of others!

Please stay tuned to read about some amazing women and feel free to let me know if you or someone you know has a story to share!