Emily's story

Surviving five years of pain with family support and a spirit of hope

ttuell@sierrastar.comAugust 27, 2013 

When 20-year-old Emily Solomon woke up in a hospital bed at University of California Los Angeles Medical Center in Westwood on June 21, a whole new world of possibilities opened for her. One of the biggest possibility was a life with no pain — something she has not experienced in almost five years.

It all began just before Emily's 16th birthday. She began experiencing pain and bloating every time she ate. She went to the doctor and was told she had gas, but the pain wouldn't go away. When the pain finally became more than she could bear, Emily went to Urgent Care in Oakhurst. It was there that she was diagnosed with pancreatitis, an inflammation of the pancreas, just three days before her 16th birthday in October, 2008.

The pancreas, which is located behind the stomach and next to the small intestine, has two jobs — to secrete digestive enzymes and release insulin. Pancreatitis occurs when, according to WebMD, the "digestive enzymes are activated before they are secreted into the duodenum (a section of the small intestine) and begin attacking the pancreas." Pancreatitis can be life threatening.

Immediately following diagnosis, Emily was taken by ambulance to Children's Hospital Central California, and then transferred by ambulance to UC San Francisco for specialized care over a five-week period.

"That began my next five years of living at Children's," Emily said.

Whenever Emily would eat, her pancreas would become so swollen that the digestive enzymes would get stuck in her pancreas and begin eating her pancreas instead of digesting food. She would stop eating, go to the doctor for help with pain management, and if the pain would not subside, she would have to go back to the hospital for long term fasting and IV nutrition.

"It was not uncommon for Emily to go a month without eating or drinking anything at all," Kellie said.

Over those years, she spent three birthdays, two Thanksgivings, Easter, and every Valentine's Day in the hospital. All hospital stays combined, she spent more than two of the past five years in the hospital.

She even walked on the Yosemite High School football field as homecoming princess, followed immediately to a trip to the ER.

She made the varsity soccer team, but had to quit due to her frequent hospializations. She was forced to miss a semester of high school, although she later graduated on time as an honors student.

"Because even a single meal could irritate Emily's pancreas and immediately lead to a two-week hospitalization, we quickly learned to take each day as it came to us," said Kellie, Emily's mother, a teacher at YHS.

Because eating was hard for Emily, she had to receive calories through a port and for a while even had to carry an IV bag around in a backpack. She underwent 13 procedures, including exploratory surgeries, but none of the procedures provided lasting relief.

"I felt bad for my little brother (Ethan) when it came to birthdays and vacations ... along with the rest of the family, he just had to step back and let my condition dictate our schedules," Emily said.

Trip to UC San Francisco Medical Center

When the doctors at Children's Hospital sent Emily to UC San Francisco Medical Center, she was diagnosed with Idiopathic Chronic Pancreatitis, which is irreversible, and has a 50% chance of giving the patient pancreatic cancer and diabetes.

However, new possibilities opened up for Emily when she met Dr. Marvin Ament, a distinguished pediatric gastroenterology doctor and professor at UCLA and children's Hospital Central California. Dr Ament told the family world renowned GI surgeon Dr. Howard Reber at UCLA. Ament even wrote a letter to Reber, asking that he meet with Emily and an appointment was made.

Together Reber, and transplant doctor Gerald Lipshutz, M.D., recommended a total Pancreatectomy with Islet Cell Transplant — a procedure where the pancreas, spleen and duodenum are removed (all three organs share a bloodline) and the islet cells are harvested from the pancreas and re-planted into the liver.

Through it all, Emily's parents, Eric, former director of the Oakhurst Boys & girls Club, and Kellie, never let her spend a night alone in the hospital.

"Where we lived was never important, only that our family stayed together and supported one another," Kellie said. "It was our duty and privilege to take away any burden possible off her shoulder. We could not take the pain away but we could make sure that she never felt alone."

"She's young and wants to go live life, but most of the time before the surgery she was curled up on couch or in the hospital," Kellie said. "We knew something needed to be done because the pain and isolation were wearing her down. We were hopeful when the doctors at UCLA encouraged us to remove Emily's troublesome organs. They said they would do the procedure if their own children were in Emily's place. We knew we had encountered the right doctors at the right time to take this big step."

Organs removed and flown to San Francisco

On the big day two months ago, Emily was prepped for surgery — only the seventh person to have this procedure done at UCLA. Eric, Kellie and Ethan anxiously waited at the hospital throughout the entire 16 hour procedure.

"Saying good-bye to Emily that morning when they wheeled her away to surgery was difficult because we knew the surgery was extensive and the recovery painful, yet we were overcome with peace believing that God would not only take care of her, but also use this experience to bless her future life."

Emily's organs were removed at UCLA and flown by helicopter and airplane to the UCSF lab where there was proper equipment to harvest what remained of Emily's insulin producing islet cells. Once harvested, they were mixed into an IV for the transplant.

Meanwhile, Emily was laying unconscious on an operating table at UCLA. The cell harvesting process took about five hours, which resulted in a yellow liquid filled IV bag that was full of Emily's pancreatic cells. The IV bag was then flown back to UCLA where the cell-filled liquid was transplanted into Emily's liver to act as a host.

Now, doctors and the Solomon family are hoping that those cells will settle into the liver and begin making insulin again. Without a pancreas, Emily became a diabetic on the day of her surgery but there is hope she will not remain diabetic throughout her life. Emily has to test her blood sugar 10 times a day and it seems her body is now making some insulin on its own. She also has to take pancreatic enzymes with every snack and meal in order for her stomach to digest food.

"Surgery was an end to this experience in life and a new start — a new birthday," Kellie said. "That's when this new Emily with a million possibilities had her first day."

Even through the almost five years of pain, ER trips, doctor visits, and hospital stays, Kellie said Emily's positive spirit shined through.

"Emily is a definitely a strong girl and has the right attitude," Kellie said. "She did a really good job of staying up-beat throughout all this."

Being in the hospital so much, Emily said she saw a lot of heartache and it made her appreciate what she did have.

Emily said there were tough times when she felt the world was going on without her, but even in the worst pain she said she knew things could only get better.

"I'm happy it happened to me, because I had the right philosophy," Emily said. "I had never been worried about it in a weird way. Just being positive is how my parents raised me."

"I would always think, 'It's going to be better tomorrow,' Emily said. "You know it will happen eventually, and you have to keep telling your brain that it will be okay. I had great doctors and a great family helping me get through all this."

Emily is not one to sit around and has already started on the next phase of her life by taking an EMT class.

"The medical field is really exiting for me — seeing the resiliency of people and hearing their stories and what makes them keep going," Emily said.

Even before she got sick, she was interested in pursuing a medical career and now plans to become either a pediatric nurse or a psychologist for chronically ill children. She has also become an advocate for pancreatitis and has been asked to speak at a couple medical conferences since her surgery.

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