Patient Stories

 

Stephany, Brazil – Pituitary Germinoma

The Children’s Hospital of Philadelphia (CHOP)

It was the spring of 2011 when Jessica Nascimento first realized something was wrong with her 11-year-old daughter, Stephany. “I noticed she was drinking a lot of water and going to the bathroom way too many times,” Jessica says. The first pediatrician who saw Stephany said nothing was wrong. But a second opinion from a doctor in São Paulo, Brazil, the capital city of the country they call home, was different.

 

It was the spring of 2011 when Jessica Nascimento first realized something was wrong with her 11-year-old daughter, Stephany. “I noticed she was drinking a lot of water and going to the bathroom way too many times,” Jessica says. The first pediatrician who saw Stephany said nothing was wrong. But a second opinion from a doctor in São Paulo, Brazil, the capital city of the country they call home, was different. The doctor was worried about her frequent urination, but even more concerned that Stephany hadn’t grown in a year. An appointment with an endocrinologist, multiple tests, and a painful spinal tap still didn’t reveal the problem. It was an MRI that finally showed the pituitary gland tumor deep inside Stephany’s brain. Many times these tumors are not cancerous, but a biopsy told the family that Stephany’s case was different: Pituitary Germinoma. The cancer had not spread, but treatment needed to begin right away. Stephany started chemotherapy in June 2011.
Looking for Options Jessica and her husband knew the next step after chemotherapy was radiation. It was a frightening thought. They’d learned about the potential long-term side effects that can result from radiation treatment, especially for young children treated for brain cancer. Radiation therapy can interfere with maturation processes happening when the brain is still developing, impacting the ability to think, put together ideas and perform abstract reasoning. Jessica wanted an alternative that wouldn’t put so much of Stephany’s healthy brain tissue at risk. The family discovered the option of proton therapy by doing research online. Proton therapy is an advanced form of radiation that targets radiation more precisely, minimizing damage to nearby healthy tissue. It’s a treatment that greatly reduces the risk of acute and long-term side effects. But because the technology is so new, proton therapy is not yet available in South America. And worldwide, there are few proton programs designed specifically with pediatric patients in mind. Jessica’s brother-in-law, a New York pediatric pulmonologist who knew The Children’s Hospital of Philadelphia well, proposed the idea of travelling from Brazil to Philadelphia to get this cutting-edge treatment. Knowing that proton treatment at CHOP would also offer a partnership with Stephany’s primary oncologist in Brazil, access to CHOP’s top-ranked Cancer Center, and the resources international families need, Jessica made the choice to come to Philadelphia.
A 4,700 mile Journey Traveling so far from their home while dad stayed behind was daunting. But from the first meeting with doctors, one that happened right in the children’s play area of the Roberts Proton Therapy Center, Jessica’s and Stephany’s experience with CHOP was a positive one. CHOP’s International Patient Services (IPS) facilitated the transition of Stephany’s care from Brazil to the US. IPS staff took on the responsibilities of case management: coordinating the intake process and medical evaluation, clearing finances, and locating housing and interpreter services. Arrangements were made to stay at the Ronald McDonald House in West Philadelphia for the six weeks of Stephany’s treatment. Not only would Jessica and Stephany call Philadelphia home for the next month and a half, but so would little sister Sophia, 8. “In the beginning I was unsure that bringing Sophia would work, but I decided it would be good for her to witness and be a part of Stephany’s treatment,” says Jessica. “It was a positive experience for her to have her sister here.” The fact that the family speaks Portuguese was of no concern. An interpreter met the Nascimentos soon after their arrival in February 2012. She was with them at every evaluation and treatment to ease communication between the family and clinicians and child life team at CHOP. Jessica says that with the support of the many staff members and clinicians they saw every day, the family felt truly at home. Between treatments, the Nascimentos had the chance to enjoy Philadelphia, a city Jessica loves and calls “beautiful.” There was always something fun to do when treatment was done for the day, like visiting Philadelphia’s museums. “These things made our stay much, much easier,” says Jessica.

  
 

With the support of the many staff members and clinicians we saw every day, our family felt truly at home.

 
  

Tackling Six Weeks of Proton Therapy While the family adjusted to life in Philadelphia, Stephany adjusted to daily proton treatments. At first, it wasn’t easy. Stephany was scared of the mask that kept her head in position. But child life specialist Allison Greb spent time preparing Stephany for treatment and encouraging her to use the coping skills they’d practiced together. The radiation therapists were patient and understanding while they helped Stephany get through each treatment. Weekly blood draws were also difficult, but medical play helped address many of her fears. Little sister Sophia had her own job to do. When Stephany was scared, Sophia went into the gantry room to see what proton therapy was all about. Satisfied that it didn’t look so bad, she challenged her big sister: “Why do you cry? Why are you afraid? This is it?” It was the extra push Stephany needed to get over her fears. For six weeks, Stephany crossed off each treatment on a calendar her mom had given her. After she’d made 30 big Xs through proton days, Stephany reached her last appointment – two days before she turned 12. Her birthday surprise was something she never expected: the children’s playroom packed with two aunts, an uncle, three cousins, Justin Bieber posters, and a birthday cake on her final day at the Roberts Proton Therapy Center. The family and staff were there to cheer Stephany on as she rang a gong signifying the end of treatment.
Going Home With cancer treatment behind her, Stephany will go back to being a seventh grade girl who loves science class, reading, artwork, singing, and dancing. “We hope now she will be cured,” says Jessica. All of Stephany’s follow up care happened at home in Brazil, but she took a piece of this city home with her: CHOP’s support as her care is transitioned back to her primary oncologist and a special project she finished during treatment – a scrapbook filled with memories of her life in Philadelphia.

Maria, Spain – Meningioma

UPMC and Children’s Hospital of Pittsburgh of UPMC

A few weeks before Christmas in 2011, 46-year-old Maria del Mar Minguez began having severe headaches and feeling very tired and weak. The pain and fatigue were making it difficult to perform her job as a psychologist in Valladolid, Spain, where she counseled people who lost their sight – a personally fulfilling job for Maria since she was born with visual impairments.

The Challenge A few weeks before Christmas in 2011, 46-year-old Maria del Mar Minguez began having severe headaches and feeling very tired and weak. The pain and fatigue were making it difficult to perform her job as a psychologist in Valladolid, Spain, where she counseled people who lost their sight – a personally fulfilling job for Maria since she was born with visual impairments. Maria suspected that the symptoms were caused by a herniated disc that gave her similar problems in the past. As Maria’s pain worsened and she began losing feeling in her limbs, she traveled to Madrid to visit the neurosurgeon who previously treated her herniated disc. However, this time an MRI showed a more serious problem. A tumor near the base of Maria’s skull was pressing against her brainstem, causing the symptoms. The tumor was diagnosed as a meningioma, or a tumor of the protective linings of the brain. If it wasn’t removed, it would continue to grow and cause severe and permanent damage to Maria’s brain.
The Path to UPMC Maria’s neurosurgeon informed her about the traditional surgical technique used in Spain to remove meningiomas, which involved a high risk of nerve damage and complications. He strongly recommended she travel to UPMC to undergo a minimally invasive procedure that has a very high success rate. “My doctor told me that I was too young to get the traditional surgery, that I shouldn’t take the risk,” said Maria. “I have two daughters, ages seven and nine. He told me to think of them.” Still, the decision wasn’t easy. Maria’s insurance in Spain would not cover the procedure, let alone travel expenses. “I simply couldn’t afford to have the surgery, not without help,” Maria says. That’s when her community rallied to her aid, with everyone from her family to her coworkers chipping in to ensure that she could get the lifesaving care she needed. “I couldn’t believe my friends and family raised all that money to get me to the states to have the procedure done. I couldn’t be more thankful,” she said. Maria began to communicate with Juan Fernandez-Miranda, MD, who speaks her native Spanish. He explained how they would remove the tumor using the groundbreaking Endoscopic Endonasal Approach (EEA) that allows for the removal of tumors through the nose and sinuses. Maria and her family felt confident that this treatment could possibly remove the tumor, and within a few weeks, they were on their way to Pittsburgh.

  
 

Little by little I was able to see improvements. The pain I was feeling before the surgery was disappearing, and I knew then that it was a success.

 
  

The Solution During the 13-hour surgery, Dr. Fernandez-Miranda, along with Drs. Paul Gardner and Carl Snyderman, removed a tumor the size of a robin’s egg through Maria’s nose, immediately taking the pressure off her brainstem. In the days following her surgery, Maria noticed that her symptoms were disappearing. “Little by little I was able to see improvements,” she said. “The pain I was feeling before the surgery was disappearing, and I knew then that it was a success.” Before and after the surgery, Maria and her family stayed at Family House, which allows patients and loved ones from outside the Pittsburgh area to stay and recuperate in a comfortable setting. During her time at Family House, Maria acknowledged that the caring staff and the other patients who enjoyed hearing about her experiences – often shared through her English interpreter – helped with her recovery. “Hearing all the other positive patient experiences at UPMC really helped put me in a good mood, and the care I received there was incredible. Actually, it was beyond incredible, I’ll always remember my time there,” she says.
The Results Maria was able to return to Spain and reunite with her daughters within 15 days of her surgery. Just before flying home, Maria and her sister were enjoying shopping in downtown Pittsburgh when Dr. Fernandez-Miranda asked Maria to come in for a quick follow-up scan to ensure she was progressing well. Maria laughs as she remembers, “My sister and I showed up at the hospital with armfuls of shopping bags. Luckily, it was only a quick visit, and we got right back to shopping.”

Mohammad, Kuwait – Gastroesophageal Reflux Disease (GERD)

Cincinnati Children’s Hospital Medical Center

After traveling more than 7,000 miles, Mohammad arrived at Cincinnati Children’s for his first appointment in July 2011. The 4-year-old was significantly underweight and unable to eat due to gastroesophageal reflux disease (GERD), complicated by an esophageal stricture.

The Challenge After traveling more than 7,000 miles, Mohammad arrived at Cincinnati Children’s for his first appointment in July 2011. The 4-year-old was significantly underweight and unable to eat due to gastroesophageal reflux disease (GERD), complicated by an esophageal stricture. Although he was hungry and craved solid foods, it was far too painful for him to swallow solids. Mohammad was surviving on a diet of liquids and yogurt. His medical condition was taking an emotional toll, as well: He couldn’t bear to watch others, especially children his age, eat. His mother would wait until he was soundly sleeping to prepare meals so it would not upset him. Mohammad’s family was desperate to find a way for him to eat.

  
 

No matter how busy they were, they always took the time to listen to everything I had to say and answer all of my questions.

 
  

The Solution After many failed attempts in hospitals around the world, their search for help led them to Cincinnati Children’s. From the moment his mother and brother arrived, they were reassured by the collaborative approach to Mohammad’s care. Specialists in pediatric gastroenterology, nutrition and allergy worked as an integrated team and proposed a holistic plan of care that included diverse therapies as well as surgery. Throughout their stay, Mohammad’s family was confident that he was receiving the best care possible. Having been to many other hospitals that lacked a pediatric focus, they were impressed with the excellent level of service, and they found the care providers very attentive to their needs. Mohammad’s mother is especially thankful to Ajay Kaul, MD, gastroenterologist, and Greg Tiao, MD, surgeon, for their incredible efforts. “No matter how busy they were, they always took the time to listen to everything I had to say and answer all of my questions,” she says. As international patients, the family certainly faced some challenges, including the language barrier, but thanks to assistance from the International Patient Care Program staff and a supportive and resourceful environment for international patient families, the issues were minimal. Today, Mohammad is at a healthy weight. He and his family look forward to returning home to Kuwait. On a recent afternoon, while his mother and brother were busy planning for their trip home, Mohammad could be heard asking for his favorite food – pizza.