Once a Princess, Forever a Princess

Once a Princess, Forever a Princess

Friday, September 2, 2016

Olivia Swedberg was a vibrant, independent little girl from North Platte, Nebr. Just from a single glance, she instantly made you smile.  She radiated with positive energy.  And she was tough, a true fighter.  What she did in the three short years she had on earth is more than most of us will be able to do in a lifetime.

“She was a “do it myself” kind of girl. She always wanted a job, she loved to sing, Frozen was the top song in our house.  She was quite the princess.  She always had to wear a dress,” said Lauressa Swedberg during the 2015 Team Jack radiothon.

As a baby, Olivia was diagnosed with Nystagmus, a condition of involuntary eye movement. The family and doctors couldn’t determine if she was born with it or developed it.   At eight months old,  they officially diagnosed her with congenital nystagmus and declared it was something she was born with.  In February, they brought her to a routine eye exam and Olivia needed glasses.  She was really off balance, falling all the time and running into walls.  She had a cold, so it was assumed she also had an ear infection.  However, it had gotten so bad that she couldn’t even hold a glass of water, because she was shaking.  The following week, they went to the doctor and no ear infection.  They told her if she worsens, she needed to go to the emergency room.  She then complained of severe headaches and was often exhausted.  The next morning they went to the emergency room and were told Olivia had a mass on her brain stem.  They were taken to Omaha Children’s Hospital to perform an MRI.  Olivia was diagnosed with brain cancer on May 7, 2015. After her MRI, it was clear that her brain tumor, known as a diffuse intrinsic pontine glioma (DIPG), was inoperable and Olivia had a zero percent chance of surviving the diagnosis.

Diffuse intrinsic pontine glioma (DIPG) is a type of brain tumor found in the pons, part of the brainstem on the lower back of the brain, near the top of the spinal cord. DIPG primarily affects children, with most diagnoses occurring between 5 and 7 years of age. DIPG makes up 10-15% of all brain tumors in children, with about 100-150 new diagnoses per year in the United States and about 300 per year in all of North America and Europe. Unlike many other pediatric cancers, there has been little progress in improving treatments and cure rates for DIPG over the last few decades. Unfortunately, fewer than 10% of children will DIPG survive two years from diagnosis.

After her diagnosis, Olivia’s parents, Lauressa and Brock, had to make a difficult choice: to treat the tumor with a 0% survival rate or to bring their little girl home and spend her last days celebrating her life.  Her parents chose to bring Olivia home to live her life as happy as possible, rather than treat her with possibly harmful radiation.

“She had a brain tumor that had a 0% survival rate.  We could have done chemo and radiation and there was a chance it could change the tumor and we could have had a little more time, but ultimately it would have come back and taken her life. So we decided to let her live her life to the fullest and not put her through treatment because there was no survival rate. If there was even a 1% chance, we would have done it,” Lauressa said.

They came home and she progressed very fast.   Her family was determined to enjoy their last days with their sweet girl.  At this point, Olivia was unable to use her right side. She went from hardly walking, to crawling, to not being able to do either.  In her last month, the community came together and had a big benefit prom.  Olivia was dressed to the nines, as a princess, of course. They sang, they danced, every little girl’s dream come true.  They were also granted a Make-A-Wish trip on a Disney cruise.  Olivia’s mother always wanted to take Olivia to the beach…her one goal before she was gone.  The day before the cruise, she wasn’t feeling well, but they proceeded with the trip.  They arrived on a Monday, June 22 and she did well the first day.  Tuesday, they made it to the beach.  Olivia and her mom sat in the water…her one mission accomplished.  She threw seashells.  Enjoyed the water.  Was peaceful. 

The next morning, Olivia had gotten worse.  The cruise boat brought them into the hospital and they admitted her right away.  She was worsening.  Through Make-A-Wish and travel insurance they were able to life flight Olivia back home.  They arrived home on a Sunday.  On Monday, her brain herniated and by Tuesday, she was declared brain dead, Olivia passed on Tuesday, June 30, 2015. 

At Olivia’s diagnosis, Lauressa and Brock had a tough conversation, but at the same time, the easiest one she had ever had.  Through her own extensive research, she read a story about a family who was able to donate a tumor for research.  She turned to her husband for his thoughts.  He said absolutely. Then they proceeded to discuss organ donation.  She was an organ donor. They both agreed.

“It was one of the easiest conversations I have ever had. I knew what would happen to Olivia with this tumor, so I researched, and it became my mission, my end goal.” 

On Wednesday, they began harvesting Olivia’s organs, a liver, kidneys, heart, intestine and one cornea.  Three boys under the age of four are alive because of her and one male, 22 years old.

“Still to this day, it takes my breath away.  Did I really lose a three year old little girl? How did this happen?  Because of Olivia and what she did for these little boys and their families, I can move forward,” Lauressa said.

Although their grief is still recent, the Swedberg family feels comforted knowing such good came from their loss. Thinking about her daughter now, Lauressa can easily describe her:

“She was always beaming.  Wow, she just radiated, in every picture she just radiates.  A complete princess.”

Celebrate Olivia’s legacy by following her family’s blog:   www.facebook.com/Princesses-Dont-Wear-Pants-898807380177990

Want to help kids like Olivia?  Here is how:

  • Vote ANDY DAILY to help Team Jack win $100,000 for pediatric brain cancer research.
  • Become a Champion for a Cure for just $15.00 a month
  • Share this blog on your social media.

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