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Meet Caroline, Neuroblastoma Survivor.

by Lisa Metzger, Hero Mom

Lisa Metzger, Hero Mom to Caroline, shared her story with us. When Caroline was just 6-months-old, she was diagnosed with neuroblastoma, a type of childhood cancer that often occurs in infancy. Caroline is now a wild and fun loving 3-year-old and a big sister to her little brother "Super Sib" Stephen.  Keep reading to learn more about Lisa, her daughter and how your support of ALSF is truly helping get us closer to cures for childhood cancer. 

It wasn’t until October 2013, that Alex Lemonade Stand entered “my reality.”  It seemed to be a typical Monday afternoon.  I was getting ready to lie down to sleep before my overnight shift at 7pm.  I was working as a nurse at a local hospital at the time.  My six month old daughter, Caroline, was napping beside me in her pack and play when she began to cough.  I didn’t think much of it because she had been congested for a few days, but it started getting worse.  I attempted to clear her nose with a bulb syringe, but it didn’t seem to work.  Then, suddenly, she stopped breathing completely.

After three attempts to call 911, I was finally able to feel my fingers enough to dial. An ambulance was on the way.  I began CPR and was able to revive her, but it was only a matter of time before she would stop breathing again.  I was in a shock.  Why would Caroline stop breathing?  It couldn’t really be happening.  EMTs arrived and transported Caroline to the closest children’s hospital. Once a breathing tube was secured, I was able to take what seemed like my own first breath since I made the phone call to paramedics. 

In the emergency department, Caroline had blood work, x-rays, a CT scan and was quickly transferred to the Pediatric Intensive Care Unit (PICU). Doctors ordered an MRI and within a few hours, on what started out as a typical day, my husband and I were delivered the worst news of our lives. Our daughter had cancer— a mass in her chest and neck that compressed her airway.

We decided to transfer Caroline’s care to the Children’s Hospital of Philadelphia (CHOP). We waited 16 hours for the transfer and at 4:30 am, we began our journey.  

It wasn’t until our daughter was admitted to the PICU at CHOP, that she was formally diagnosed with neuroblastoma. Within four hours of transfer, Caroline was in the operating room for a port placement, bone marrow biopsy and tumor biopsy. She received her first dose of chemotherapy later that evening; just 48 hours after we first heard the word “cancer.”  

Caroline spent a little over four weeks in the PICU. She received her first two rounds of chemotherapy to shrink the tumor just enough for the team to remove her breathing tube. She received a total of eight rounds of chemotherapy, the last one finishing around the week of her first birthday. I cannot remember every detail during that time. There were ups and downs and ins and outs. I will never forget how I felt when I heard the news she had cancer. And I will never forget how I felt when I heard the words, “but we have a treatment for it.” The darkest hours of my life had a spark.

We were beyond pumped and ready to fight. Caroline had a team of physicians who continued to reassure our hopes for Caroline’s recovery.

While my husband and I spent every moment focused on Caroline’s recovery and treatment plan, both of our families were researching Alex’s Lemonade Stand Foundation (ALSF). 

Our extended family felt helpless in a situation that was completely out of their hands. ALSF offered them information on her type of cancer as well as a way to come together and rally their bottled up emotion and energy towards the benefit of childhood cancer research. They created a team in honor of Caroline for the 2013 Lemon Run, and managed to raise $8,000 in just a few short weeks.  

It took me a while—until Caroline was done treatment—to be able to fully understand the magnitude of ALSF and its impact on Caroline’s experience.  

When I was delivered the news of her diagnosis, the first thing I thought was that she was going to die. But then the doctors sat down with my husband and I and informed us they had a roadmap of chemotherapy to treat her type of cancer.  They were passionate. We were fortunate for her team. After further genetic testing of the tumor, they assured me that she would beat it.  She would beat it and they were confident of it.  

Their confidence was contagious, but I wondered what made them so confident? Their answer was: “research.” I believe 13 years after her first lemonade stand, Alex Scott was somewhere close watching this interaction and smiling, knowing her legacy was growing strong. 

Alex’s vision was to live in world without pediatric cancer. Her mission is thriving today thanks to her parents and the amazing staff of ALSF. The Foundation is an educational and financial resource for families as well as a social support for siblings affected by cancer. They not only deal with the logistics of finding cures and treatments for childhood cancer, but they have also developed a positive culture between hero families (those on the front lines) that is deeply compassionate and encouraging.

Today’s pediatric cancer treatment is always improving because of Alex’s legacy: my own daughter, Caroline, is living proof. 

 

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