2012 Family Advocacy Day All-stars

Meet Robert P., Sagamore Hills, OH

Robert is a happy, healthy young man who enjoys spending time with friends. Looking at him now, it is hard to believe that on October 2, 2008, he was diagnosed with acute myeloid leukemia (AML), a cancer of the myeloid blood cells that is characterized by rapid growth of abnormal white blood cells that settle into the bone marrow and prevent the growth of normal blood cells. From the moment Robert heard the diagnosis and learned that he would spend six months at Rainbow Babies and Children’s Hospital, he faced his predicament with a positive attitude, mental toughness and faith in God. Through the work of skilled doctors, the compassionate care of nurses, and the support of friends and family, Robert’s luekemia is now in remission. Robert recently graduated high school, where he was captain of the cross country team and senior class president. He plans to attend Miami University in the fall, where he will study premed and philosophy. 

Meet Nicholas A., Pelham, NH

Nicholas is a 14-year-old veteran of Boston Children’s Hospital. He first arrived there by ambulance when he was just 12 hours old. Nicholas was born with Down syndrome, a genetic condition caused by having an extra chromosome, as well as a heart defect that resulted in a pair of surgeries during his first months of life. By age 3, he had been diagnosed with many other health issues, and has since endured six surgeries, at least 10 endoscopies and Botox injections, countless other tests,  procedures, blood draws and various therapies. He currently sees a team of 12 specialists at Boston Children’s Hospital who help him stay healthy. Through every trial, Nicholas maintains a smile. He is a wonderful, endearing soul who seems to always know just when to say “I love you.” He enjoys music, baseball, swimming, biking, bowling, eating out and time with friends. But most of all, Nicholas loves to be with his family and his German Shepherd Ivan.

Meet Leanna H., Hingham, MA

Two years ago, Leanna was a happy teen in good health. During her freshman year of high school her health deteriorated to the point where, in February 2010, she was rushed to Boston Children’s Hospital. There, doctors diagnosed an extremely rare type of tumor on her adrenal gland, a pheochromocytoma. The tumor caused heart problems, temporary loss of vision, exhaustion, difficulty walking, high blood pressure and diabetic symptoms, among other symptoms. Untreated, the tumor would have soon been fatal. Leanna spent five weeks on bed rest at Boston Children’s Hospital and underwent an adrenalectomy, a surgical removal of her adrenal gland. Surgery was followed by a year of recovery and rehabilitation as Leanna worked to regain her health, build strength and walk unassisted. Due to the life-saving care she received, Leanna has resumed playing ice hockey and golf for her junior year of high school. She is an honors student, a member of the Teen Advisory Committee at Boston Children’s Hospital, and a participant in drama and oceanography clubs. 

Meet Claire B., Kenosha, WI

Claire is an energetic girl who loves horses, nature, art and the piano. She was born six weeks premature with a cleft lip and palate. Three days later, she was diagnosed with autosomal recessive polycystic kidney disease (ARPKD) and congenital hepatic fibrosis (CHF). The prognosis was grim; doctors initially believed she would only live a few days. Claire spent three months in the NICU and gained enough strength to have a trio of surgeries to correct the cleft lip and palate. But the ARPKD causes eventual kidney failure and by age 8, Claire’s kidneys were functioning at only 30 percent. Claire’s mom sought help at Children’s Hospital of Wisconsin and Claire received a kidney transplant on New Year’s Eve. The new kidney has given Claire an increase in energy, and this past year she played on her school’s girls’ basketball team. Today she faces an uncertain future with the progression of her liver disease (CHF), along with other issues. But through every challenge, Claire keeps smiling. 

Meet Tyler F., Medina, OH

Tyler, an active 19-year-old who enjoys spending time with his brother and sister, has overcome many immense challenges. At age 6, Tyler experienced persistent pain in his joints. He was diagnosed with acute lymphocytic leukemia (ALL), a fast-growing cancer of the bone marrow and blood that often results in immune deficiency and pain in the bones and joints. For more than two years he underwent chemotherapy, and the cancer went into remission. Tyler relapsed at age 12 and again at 17. With the help of Akron Children’s Hospital and his sister, Chelsea, who was a perfect match, Tyler received a bone marrow transplant. Following the bone marrow transplant, Tyler was diagnosed with chronic graft-versus-host disease, a condition where the transplanted marrow recognizes the host’s marrow as foreign. Through all of these complications, Tyler never lost his strength. He graduated high school, takes online college courses and still finds time to play his guitar and enjoy recreational sports. 

Meet Kyler Q., East Calais, VT

Kyler is an active 8-year-old who lives with his parents and his yellow lab, Rudi. Kyler has spastic quadriplegia cerebral palsy, a severe form of cerebral palsy that affects muscles in his core and all four limbs. Kyler has been receiving treatment at Boston Children’s Hospital since he was 2 years old, and he has an entire team to provide him with care. Kyler’s specialists work together to determine which treatments will keep Kyler able to participate in the activities he loves. Thanks to the excellent treatment he receives at Boston Children’s Hospital, Kyler is able to play sports, work outside with his Dad in the garden, ready wood for the winter, camp in the backyard, and go hunting and fishing. Kyler loves the Red Sox, swimming, horseback riding, skiing, and playing baseball with his friends.   

Meet Ike L., Upper Arlington, OH

Ike is a healthy, happy 2-year-old boy. In January 2010, when Ike was just 1 month old, he began his relationship with Nationwide Children’s Hospital. He was admitted with RSV (a respiratory infection), strep pneumonia and a collapsed lung. Unbeknownst to his parents, Ike was actually going into septic shock, a serious condition that occurs when infection leads to dangerously low blood pressure. Ike ended up spending nine days in the Pediatric Intensive Care Unit (PICU) where he was placed on a ventilator and 12 machines that provided him with medicine, antibiotics and nutrition. Today, Ike has recovered from the illnesses. He does continue to have respiratory conditions requiring ongoing treatment from the physicians and experts at Nationwide Children’s Hospital. It is those treatment plans that keep Ike healthy and vivacious. Ike, also known as “Hurricane Ike” for his feisty and commanding demeanor, is a twin to his brother, Drake. Ike and Drake along, with their older brothers Kuyper and Duke, enjoy playing all activities that have to do with a ball, club, stick or bat. Many thanks to Nationwide Children’s Hospital for the tremendous care that kept Ike with his fellow teammates…his family!

Meet Maya C., Miami Springs, FL

Maya was born healthy on May 7, 2010. Nine months later, Maya had a very high fever and her family rushed her to Miami Children’s Hospital at the advice of her pediatrician. There, Maya was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the white blood cells. Maya then began a two year chemotherapy protocol to treat the disease. Thanks to the efforts of the hospital oncology staff, she is now a strong and healthy 2-year-old. While Maya continues to grow, the battle is not yet over. Although Maya went into remission two months after starting her treatment, she still has almost another year of chemotherapy to fully complete her treatment. Maya’s family members feel very blessed and fortunate to have the support and care of Miami Children’s Hospital helping work for the wellness of their most precious gift: Maya. 

Meet Julia P., Bayville, NJ

Julia was 6 pounds at birth and seemed in perfect health until checkups at 9 and 12 months revealed a drop in her growth curve. For two years, Julia visited Children’s Specialized Hospital every three weeks as doctors tried to understand her failure to thrive. When the issue became life-threatening, gastro-exploratory surgery revealed that Julia had ulcers caused by food allergies. A children’s hospital nutritionist and feeding team were instrumental in putting Julia back on a healthy growth curve. Once her food issues were resolved, a speech issue emerged. Julia could label things, but could not put words together. Her speech therapist taught her sign language and never gave up on her. At age 5, Julia was able to speak in sentences. At 8 she was diagnosed with central auditory processing disorder, which prevents the brain and ears from coordinating normally. The expert care and patience from the team at Children’s Specialized Hospital not only helped Julia get the nutrition she needed, it also gave her the gift of language. 

Meet Mike J., Vadnais Heights, MN

Mike is an amazing 14-year-old with an equally amazing attitude towards life. He loves engineering, magic tricks, listening to music, and playing trumpet in a jazz band.

Mike suffered from debilitating headaches for more than a year. His family attempted to get appointments with psychologists and neurologists but were faced with long wait times. When Mike experienced numbness in his tongue and difficulty walking, his family took him to the emergency room where he was diagnosed with a cancerous brain tumor. He was still waiting for those specialist appointments. In April 2011, he underwent brain surgery and chemotherapy treatments at Children’s Hospitals and Clinics of Minnesota. To help ensure the most effective treatment with the least side effects the treatment team also sent Mike to Indiana for proton beam radiation therapy, which delivers a high dose, highly localized radiation.

“Had we visited the neurology department earlier, I’m confident they would have seen the mass forming,” explains his dad John Johnston. “And while the treatment likely would have been the same, Mike would have suffered far less. He was lucky, and thanks to specialized care, he’s now cancer free. Sadly, for millions of other children waiting for care, the outcome may be very different.”

Today, Mike has had two clean post-treatment checkups. He is now a healthy teenage boy who enjoys participating in groups such as the National Junior Honor Society, Relay For Life, and the Youth Advisory Council at Children’s Hospitals and Clinics of Minnesota.