Three year old Ryan Encinas’ journey began with a simple runny nose that lasted about two months. It was fall 2010 and there were many likely explanations: he had just started preschool and his mom, dad, & baby sister kept passing around colds as well. Even after many doctor visits and attempted medicines, nothing seemed to help. The doctor was beginning to think it was allergies and wanted him to see a specialist. Then on Halloween weekend his breathing changed, his color drained and he became lethargic. His mom took him to the ER thinking it was pneumonia. Everyone was shocked at what they discovered.
A football-sized tumor on his left lung filled his chest cavity, completely collapsing his left lung, crowding his heart into his right lung, and bending his trachea. He was admitted to the PICU at Akron Children’s where he remained for nearly 8 weeks. His diagnosis was stage 2-3 Pleuro Pulmonary Blastoma, an extremely rare, fast growing, and aggressive, pediatric cancer. He received chemo every 3 weeks, running for 24-72hrs straight. He spent a total of 54 days in the PICU, most of which was on a ventilator. He had a feeding tube in his nose and even had a tracheotomy. Things looked very, very grim in the beginning and he experienced so many side effects from the drugs. But he had a miraculous turn around. Two surgeries and 41 weeks later he had his last dose of chemo on August 6th, 2011. He has had follow up scans every 3-6 months since then and they have all come back NED (no evidence of disease). His last scans are set to take place in September 2014 when, God willing, he will be declared “cured”.
We first met Littlest Heroes in 2011 through the Art for Children’s Sake program. The social worker at the hospital had mentioned it to us after seeing Ryan painting in the hospital. His painting “Time to Go” won first place and Best of Show that year and a trip to Disney. His art has since won second and third places as well throughout the years. The encouragement and support The Littlest Heroes has given Ryan has been amazing to his self-esteem and creativity. He continues to amaze us with his art.
Littlest Heroes has done so much for our family; from picnics and family photo shoots, Christmas presents and gift cards, to bowling nights and baseball games. We have had such wonderful opportunities to have amazing experiences and quality family time that we otherwise would not have been able to afford. But more importantly, we have gained a support system of friends in this “cancer family” and some fantastic memories to last a lifetime.
And the most memorable experience by far has to be what happened in the summer of 2013. Ryan was chosen to represent The Littlest Heroes at a very special Cleveland Browns practice. He gained national media attention for his epic touchdown run with a professional football team at only 5 years old. He became an internet and media sensation overnight as his display of determination and survival stole the hearts of people across the world. It was a night we will always cherish.
Dakota Bennett’s Ultimate Race
Flashback, please, to January 2010: Life is sweet for Dakota Bennett, 14. Not only is he doing well academically, the 8th grader enjoys acclaim as one of Ohio’s top youth runners, clocking 4:38 and 17 minutes, respectively, for the 1-mile and 3-mile events.
And then persistent headaches and vision problems disrupt his life.
Migraines, Dakota thinks. Or, maybe, overexertion. A single visit to the doctor is all I’ll need.
Instead, he embarks on a series of physicians’ visits and procedures that commence in his Norwalk, Ohio hometown and culminate at TLH partner the Cleveland Clinic.
The diagnosis, when it arrives, is grim. In medical terminology, medulloblastoma. In layman’s terms, a malignant brain tumor.
An uphill path
“My first thought was ‘this is a challenge,’ ” recalls Dakota. “I knew that if I let the idea overwhelm me, it would weaken me. I wasn’t willing to let that happen.”
Medulloblastoma – the most-frequently diagnosed brain tumor in children – demands swift intervention. Dakota’s treatment plan, which was immediately set in motion, was brain surgery, to be followed by radiation and chemotherapy. His mother, Lori, recalls those days.
“You hear the words brain tumor and your first reaction is disbelief,” says Lori. “I had two younger children still at home in Norwalk, another son away in college and my husband, Bob, was in Texas on business. It’s a parent’s worst fear come to life. You never think something like this will happen to your child.”
Dakota’s cancer was in the cerebellum, the area of the brain that controls balance, muscle tone and motor function. Lori credits Cleveland Clinic neurosurgeon Jorge Alvaro Gonzalez-Martinez, MD, PhD, for ensuring she understood and was comfortable with everything related to Dakota’s ongoing treatment.
“We worried about possible paralysis or loss of brain function,” she explains. “You have so many questions and feel helpless – at first. Then, you move into fight mode and vow to beat the cancer, no matter what.”
Following his successful brain surgery, Dakota endured a period of punishing radiation therapy and then 11 months of chemotherapy. Except for extreme fatigue he completed his treatment without complication.
Even so, the commute between Norwalk and Cleveland was not always easy. And, as is always the case for families in the midst of treatment, there is no relief from the sinister possibility of the cancer reappearing.
TLH joins the race
Inherent to TLH’s mission of addressing the needs of children receiving treatment for cancer is the desire to bring pleasure back into their lives. In May 2011, Dakota found himself standing with Cleveland Browns’ linebacker Scott Fujita at popular eatery Sushi Rock (Scott, who is among TLH’s strongest advocates, uses his celebrity to raise cancer awareness). His dedication, united with TLH’s credo of caring, helped make Dakota’s event one to remember.
“The Littlest Heroes first connected me with the Cleveland Browns in September 2010,” says Dakota. “That alone was unbelievably exciting – and then the organization arranged for me to speak at Sushi Rock in 2011, about my experience living with cancer.”
Dakota takes the time to acknowledge the efforts of TLH Executive Director Ed Hollinshead, noting, “Ed worked incredibly hard to make sure the Sushi Rock event was a success. He really is an extraordinary person.”
Open roads ahead
In January 2012 – almost two years to the day of that initial terrifying diagnosis – Dakota received the outstanding news that he remains cancer-free. Lori reflects on the Bennetts’ journey and offers this advice to families who find themselves in similar circumstances:
“Realize that you were given this reality for a reason – even if you don’t understand why – and do whatever you must on behalf of your family. Always question and always learn. Never be afraid to reach out to another person or to ask for help. And, most of all, never give up hope.”
Dakota agrees. Now 16, he’s an active high school sophomore, focused on spending time with his family, his studies, a part-time job and, of course, his beloved running, including Dakota’s Run, the eponymous 5K event the family launched in 2011 with all proceeds benefiting cancer relief and research. He knows he’s gone through something most people will never experience and might not understand. This is a challenge he accepts with grace.
“Telling my story helps people understand that cancer is not automatically a death sentence and that you still can have a fantastic life,” he explains. “In some ways, being sick helped me mature. I thank God for every day that I’m alive.”
He pauses a moment.
“I don’t spend time wondering why me. Doing that has no purpose. I prefer to live my life looking to the future. Don’t look behind. Look forward – and dream.”
Words to live by.
Ka’Deidra Johnson: A Family Affair
Ka’Deidra Johnson, 12, has been a fighter the entirety of her young life. Born with Down syndrome, a chromosomal anomaly that causes delays in physical and cognitive development, she’s also battled myriad health complications, including heart surgery at 18 months and several serious bouts of pneumonia.
But in August 2010, Ka’Deidra’s fighting spirit was elevated to a more forceful level when she was found to have acute lymphoblastic leukemia, a cancer of the white blood cells that is frequently diagnosed in children.
“She’s a determined little girl,” observes Ka’Deidra’s mother, Alana, who resides in Maple Heights with her four children and her mother (and the children’s grandmother), Lettye Minor. “No matter what’s thrown at her, nothing gets her down.”
For one, for all
This is a family that understands the meaning of pulling together. Lettye helps Alana provide a guiding presence. Eldest daughter, also named Alana, 18, combines high school studies with volunteer activities at Rainbow Babies & Children’s (RB&C) Hospital, StaShawn, 16, is the man of the house, keeping his ill sister laughing and offering a strong arm when medical treatments leave her weak. Even Faith, 10, makes her presence known, reading to Ka’Deidra, and watching movies with her for hours on end. Says Alana, “Despite their own worries and sadness about Ka’Deidra’s illness, my children never stop supporting their sister.”
Alana, clearly, is a proud mother– but it’s Lettye, whom she credits with realizing that something with Ka’Deidra wasn’t right – and who, with that sixth sense families have for one another, helped in saving the child’s life.
“Ka’Deidra was in so much pain,” recalls Alana, of that day in 2010, “so my mother took her to an area hospital. They gave her a brief exam and discharged her. But my mother saw that Ka’Deidra was still suffering so she took her back and demanded that more extensive tests be run.”
The tests Lettye insisted upon revealed abnormalities that required further intervention. Within days, Ka’Deidra was admitted to RB&C to begin treatment for her leukemia. Remembering this, Alana says, “Thank God my mother took her back”
Ka’Deidra received eight weeks of inpatient chemotherapy and was then accepted for an outpatient clinical trial to which she continues to respond favorably. Nonetheless, stress and uneasiness are, understandably, constant companions in the Johnson home. Ka’Deidra’s immune system is compromised (a side effect of her ongoing treatment), making the family ever-watchful about her day-to-day health. Young Faith stepped up as her sister’s champion when neighbor children teased Ka’Deidra about a chemotherapeutic loss of hair. Says Alana, “Faith took that very hard. She’s extremely protective of her sister.”
Daughter Alana finds her hospital activities help her cope with her own sadness. A volunteer since November 2011, Alana’s duties have included reading to patients as well as transport and discharge support. She says, “Ka’Deidra’s nurse is the one who suggested I look into volunteering. She saw I wanted to help in some way and knew that volunteers are always needed.”
Discussing her experiences as a cancer sibling, she says quietly, “It’s so hard to see Ka’Deidra sick. I’d trade places with her in an instant if I could.”
Holiday happiness courtesy of The Littlest Heroes (TLH)
Perhaps more so than any other occasion, it is during the December holidays that the pressures of having a critically ill child magnify. It is a time of togetherness and joy, yes, but also a time when the strain of financial concerns increase.
In December 2011, TLH made the Johnsons part of its “Adopt A Family” program, in which families in need are matched with anonymous donors eager to help make the seasonal festivities memorable. The Johnsons received a variety of holiday cheer, including cold-weather attire and a flat screen television – gifts that were needed and greatly appreciated.
Noted on the Johnson Family’s 2012 calendar is the month August: the two-year anniversary of Ka’Deidra’s cancer diagnosis and the time when they will learn if she is cancer-free.
Alana believes that families touched by cancer should not neglect their own health, emphasizing the benefits provided by counseling and support services. She says, “It gives you the chance to express yourself in a safe setting and learn how others cope with similar issues.”
Pondering another important future is daughter Alana. The high school senior continues her volunteer duties at RB&C, while considering offers from several Ohio colleges where she hopes to pursue nursing, concentrating on either oncology or obstetrics.
“Seeing my sister ill with cancer isn’t easy,” Alana says. “It’s funny though — sometimes we break down but she stays strong. I pray that I will always be able to keep positive and be there for here. And I think we’re going to be okay.”
Spoken like someone determined to carry that fighting spirit forward.