Joseph D. Briseno, LifelineLetter Award
In honor of Nutrishare, Inc., Gold Medallion Partner
When Jay Briseno was twenty years old, he was shot by a sniper while on duty in Iraq. Jay was left with a spinal cord injury, as well as traumatic brain injury due to lack of oxygen. Unable to swallow safely, Jay has been dependent on home enteral and/or parenteral nutrition (HPEN) since 2003. Jay’s father, Joseph, is one of his primary caregivers. He is also a selfless advocate for Jay and for other wounded soldiers. When Jay was first wounded, Joseph reached out to the Christopher and Dana Reeve Foundation where he met Bernadette Mauro, the Director of Information and Resource Services for the foundation’s Paralysis Resource Center. Later, Joseph volunteered as an advocate for the Military Outreach Program of the foundation, working with Bernadette. “Joseph is his son’s voice, as well as the voice for other wounded warriors,” Bernadette says. “He has reached out to other families, soldiers and their caregivers. He shares openly about how they have navigated both the VA and DOD system to get Jay the care and support he needs. If another family needs support, a simple call to Joseph and the family has someone who knows and understands what they are going through.” Joseph left his job as an engineer to provide twenty-four hour care for his son. He and his wife, Eva, are devoted to Jay, but their commitment doesn’t stop there. “Their love and devotion extends to complete strangers, spouses and family members of other soldiers on HPEN—families uncertain of how they can make it happen at home, who are fearful of the future,” Bernadette continues. While Joseph acknowledges they have made sacrifices to be home with Jay, he writes, “We are thankful that our Jay is with us, that he is alive and living and with us, in our home, every moment of every day. And little by little, step by step, Jay has regained abilities we were told would be ‘impossible,’ given the extent of his injuries….The impossible is what nobody can do until somebody does it—and in the midst of change in our life, we often discover wings we never knew we had.” Joseph and his family have been the subject of many articles, including one in USA Today and another on PBS. Their story is inspiring, and we are pleased to welcome them into the Oley community.
Congratulations to the nominees: Mary Patnode and Harlan Johnson; Carol Pelissier; Rosaline and Bill Wu; and Tammy Zundel.
Patricia Melland and Aleah Smith, Child of the Year Award
In honor of ThriveRx, Gold Medallion Partner
Patricia (Tricia) Melland
In January 2009, ten-year-old Patricia picked up a virus. After many months in the hospital she was diagnosed with several ailments and started on parenteral (IV) nutrition. Tricia was beginning to recover when she was struck with another virus. Unable to eat, she has been dependent on tube feeding ever since. “Her last meal or real food was in August of 2010,” her mother writes. “[But she] has always had a can-do attitude. She has not let her illness define who she is.” Even when she had a naso-jejunal (N-J) tube taped in place, Tricia actively participated in a community theater musical production and attended school full time when she wasn’t in the hospital. In August 2011, a gastro-jejunal (G-J) feeding tube replaced the N-J tube.
Tricia recently graduated from eighth grade with her class, despite having missed a great deal of school since fifth grade. She has also traveled a lot this year, visiting eight states. On their trips, her mom says, “She has run into challenges, but nothing she couldn’t deal with and that we don’t laugh about now! [When] she was in Boston, there was a blackout in the hotel for twenty-four hours. She sat in the lobby all night with a super long extension cord running from her pump to a generator outside to keep her pump going! If you are creative enough, you can make anything work.”
Tricia does not let her feeding tube stop her from living her life. After being hospitalized recently with a complication from her illness, she went straight from the hospital to a diving meet, where she impressed the judges with her beautiful high flying dives.
In accepting the Child of the Year Award at the Oley conference, Tricia
credited her strength to the support she receives from her strong faith,
family, and friends.
Aleah was born with such a small amount of intestine the doctors did not expect her to survive. Her parents were given the option of “letting her go” or taking her home and feeding her intravenously. Now seventeen, Aleah has been dependent on parenteral (IV) nutrition and/or enteral nutrition (tube feeding) on and off much of her life. Aleah has undergone numerous surgeries, from when she was just hours old to just last winter.
Despite repeat hospitalizations, chronic pain, and
motility issues, Aleah is extremely upbeat and active.
She plays flute in concert band, and plays marimba,
gong, bass drum—and pretty much whatever is needed—as
the section leader for front ensemble in marching
band. She was also a member of the winter drum line color guard at
Tri-West High School, which won first place at the state competition in
2010. Aleah is in the top 10 percent of her class,
keeping up with her schoolwork by going to school part
of the day and doing the rest of her work online, with
the help of a tutor. She is also on the Children’s Advisory Board at Phoenix
Children’s Hospital, and is very involved with church activities.
When she isn’t busy with schoolwork, Aleah enjoys swimming, reading,
writing, video games, texting, and hanging out with her best friend.
“She loves her cat,” her mother, Tara, adds. “She misses her very much
when she is in the hospital.” On a recent
Make-a-Wish trip to Hawaii, Aleah and her family
enjoyed sailing and Aleah learned how to surf. When
she received the award at the Oley conference, Aleah said a
quote Tricia had cited was one of her favorites, too. Both girls agree:
“Life is not about waiting for the storm to pass, it is about learning
to dance in the rain.”
Congratulations to the nominees: Kyler Carlisle; Kendall Hollinger; Mariah Noonan; and Allison Winter.
Michelle Barford, Celebration of Life Award
In honor of Apria Healthcare / Coram Specialty Infusion Services, Gold Medallion Partner
Michelle had been a nurse for over thirty years when, in 2008, she went to the emergency room with acute abdominal pain. Surgery revealed that she had carcinoid cancer of the small intestine. A second surgery revealed that it was widespread, and the doctors sent her home on hospice. Michelle says, “I have a T-shirt from Spamalot that says, ‘I’m not dead yet,’ and that became one of my many mantras.” In 2009, Michelle discharged herself from hospice, opting to undergo surgery to have the carcinoid cancer removed—along with 90 percent of her intestine.
Since the surgery, Michelle has been dependent on home parenteral nutrition (HPN). She experienced a year or more of denial before, she says, “I finally got my groove back!” Now, it’s hard to slow her down. Michelle is on the Executive Board of the Special Olympics of Greater Memphis, and in 2010 rappelled a twenty-three story office building to help raise funds for the organization. She also volunteers for the Memphis-Shelby County Court-Appointed Special Advocate Program, where she serves as a court- appointed advocate for children in foster care situations.
Michelle is also an avid traveler. She often accompanies her husband on business trips and visits her family in other states. Last year, Michelle spent three weeks in Australia, Singapore, and Hong Kong. In February, she went on a twenty-nine day road trip, staying in eight states and two Canadian provinces.
In accepting the award at the conference, Michelle said, “You need to conquer your fears and then adapt to your new normal. Live your life as if there may not be tomorrow. Because anything—and I mean anything—you have to do surely beats the alternative.” Michelle has recently become an Oley Regional Coordinator.
Congratulations to the nominees: Kyler Carlisle; Kendall Hollinger; Marie Latta; David McGee; Patricia Melland; Beverly Mello; Mary Patnode and Harlan Johnson; Malik Saunders; Aleah Smith; Liz Tucker; Tim Weaver; Allison Winter; and Linda Zarrella.
Kerry Stone, MS, RD, CNSC, Nan Couts Award
Coordinated by Judy Peterson, RN, MS
Kerry, who currently works as a Nutrition Patient Care Coordinator for KabaFusion in California, has been involved with home parenteral and enteral nutrition (HPEN) for over fifteen years. She has worked in different capacities for different home infusion companies, which has given her a range of experience. Kerry has been a frequent contributor to Oley conferences, has helped with Oley projects (such as the tube feeding complication chart), and is
active with the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.), where she is the membership liaison for the Dietetic Practice Section.
Patient care is at the center of Kerry’s efforts and interests. In order to provide the best care to the HPEN consumers with whom she works, she stays abreast of new therapies and equipment, and keeps her knowledge base current. She is continually striving to put what she learns into practice. Kerry listens well and helps communicate consumers’ needs to other providers to make sure there is continuity of care. Importantly, she makes sure consumers get the education and support they need to be successful with PEN in their home.
Congratulations to the nominees: Jeffrey Rudolph, MD; Ezra Steiger, MD; and Marion Winkler, PhD, RD, CNSC.
Daulton Heisey and Tim Weaver, Kyle R. Noble
Coordinated by Richard and Donna Noble
Kyle Noble, who passed away in 2006, is remembered widely with affection. His family established the Kyle R. Noble Scholarship to recognize others who exhibit his enthusiasm for life. This year, the Scholarship Committee selected two recipients, who will split the $2000 scholarship.
Daulton Heisey and Tim Weaver are both good students who are very involved in their schools, extra-curricular activities, and communities, and are both notably kind, warm, mature, and committed. Daulton aspires to be a pediatric nurse when he completes his education, while Tim will study computer engineering.
Daulton started on home parenteral nutrition (HPN) when he was eight years old. He acknowledges that HPN presents challenges, but says, “I try to have a positive attitude…I believe that life is too short to allow yourself to get caught up in the unfairness of your situation; instead, I have picked my feet up and I am determined to make a difference in the world.”
Already Daulton is making a difference. He has coached baseball for younger children; volunteered with his school’s Big Star/Little Star peer mentoring program and Big Brother program; raised thousands of dollars for the American Heart Association; and served as class treasurer. Daulton has also served on the Advisory Council of Teens at the Penn State Hershey Children’s Hospital.
Tim has had to rely on parenteral and/or enteral nutrition (HPEN) on and off all of his life. He knows what it is like to be on therapy, and to be off. “While some may be disappointed or look at the negative aspects of being on HPEN,” he says, “I look beyond that. I focus on the things I am able to do because I am healthy and feeling well.”
One of the things Tim has enjoyed doing since he was young is going to a camp for children with chronic health conditions. “The ability to enjoy yourself in an environment where people accept you as you are is a rare but wonderful experience,” Tim says. “The camp has had an incredible impact on my growth and ability to care for myself.” Wanting to make this experience more widely available, Tim joined with camp counselor Matt to set up a Golden Tee (a golf arcade game) tournament as a fund-raiser. Over the past few years, the annual event has raised thousands of dollars and has grown, and Tim has taken on a wide range of responsibilities.
Tim is also on the youth advisory board for his local hospital, and often speaks about what it is like to be on HPEN. “I have spoken to a class of pharmacology students, the suppliers for Baxter, and during a presentation at A.S.P.E.N. All of these times, I have been trying to educate others on what it is like being on HPEN….It gives the doctors [and others involved with HPEN] the ability to understand the daily lifestyle of a consumer and work to improve their quality of life.”
We wish Daulton and Tim every success as they embark on their new adventures.