Update: 2-year-old Cherokee citizen has eye removed due to retinoblastoma
MCALESTER, Okla. – Hunter Kelley, a 2-year-old Cherokee Nation citizen, is recovering at home from his eye surgery he had on Dec. 10 that left him blind. Kelley suffers from retinoblastoma a rare form of eye cancer affecting mostly children under age 5.
His mother said since his surgery he has adjusted extremely well and she didn’t think it could have gone any better.
“He is doing wonderful. The stitches will come out the last week of January and he will get fitted for a prosthetic in February,” said his mother Kimberly Kelley.
The few problems Hunter’s had since the surgery, Kimberly said, have been mostly due to pain, itching from the healing process and dealing with the darkness. She said he asks several times to turn on the lights—that has been one of the hardest things during this process for her.
She added that he has been playing and becoming more like himself with each day.
On Dec. 5, Hunter received a surprise Santa Claus visit and Christmas party at the Choctaw Nation Community Center so he could have a happy holiday before undergoing the eye surgery.
“We are trying to make the best of a worse situation,” Kimberly said. “We decided to have Christmas early since he wasn’t going to be able to see Christmas.”
Hunter’s surgery was set for Dec. 10 at St. Jude’s Hospital in Memphis, Tenn., to remove his left eye because of the retinoblastoma. He could only see out of his left eye because tumors in his right eye have blinded it.
Hunter was diagnosed with the disease in April 2010.
The Pittsburg County Sheriff’s Department set up the Santa visit after being told of the situation.
“A deputy sheriff that we don’t even know out of Delaware County wanted to know if we could get a Santa at his party and we said sure,” said Sheriff Joel Kerns. “I’ve known the family their whole lives, and I’m just glad that my people come together to show this boy a great Christmas.”
The department also set up a donation jug. After Kerns told people Hunter’s story, he said they felt obligated to donate.
“Everyone that walked by I had to explain the story, and after they just felt so compelled they had to put money in there.”
He said the jug raised more than $2,000 for the family and presents for Hunter.
Kimberly said the party was about giving Hunter’s family and friends the opportunity to remember him as the fun-loving boy he is.
“Today is just a time for everyone to get together and enjoy their time with Hunter. We want everyone to remember him as a happy and playful…not so much as the child with cancer, but as the boy he has always been,” she said.
According to a Cherokee Phoenix article in July, Hunter’s cancer was under control. However, in November it spread to the fluid of his left eye despite 25 radiation treatments he received during the summer, Kimberly said.
“He had good response about halfway through, and then when we got done with radiation, a week later it was stable and there were no changes. And then four weeks after that, it had spread again. So now we are to our last option of removing his left eye and hoping that the cancer hasn’t spread outside the eye yet,” she said.
Kimberly said doctors would not know if the cancer was contained to the left eye until after the surgery. The right eye has remained stable since his chemotherapy.
“We are hoping it will just stay stable,” she said.
Doctors have not discussed expectations about the surgery because they didn’t want to give the family hope that Hunter would see afterward, she added.
However, the Kelleys are preparing to raise a blind child, which will probably mean moving from McAlester because Hunter will need several therapies.
“There are several schools for the blind. We are going to put him in those programs,” she said.
Hunter’s grandmother, Patricia Politte, said it’s important for him to receive the best care and have the best life possible.
“At this point, however it turns out, (we want him) to get the quality of life that he deserves and the education that he needs to make a good life,” she said.
Politte said since the July article, she’s had people contact her about retinoblastoma and the symptoms. She added that awareness about the disease is important.
“It was right there in the pictures, and if we would have known that white glow…we just didn’t know what it was,” Politte said. “We had no family history, none, and now we are in this situation. Have your babies checked…it’s important.”
SALINA – Proper diets reflecting the onset of puberty and growth for children ages 9-12 and teenagers should be a critical focus for parents, said Cherokee Nation Clinical Dietitian Tonya Swim.
“Encouraging healthy choices to help provide adequate energy for growth and development should be the focus,” Swim said. “There is a change that not getting adequate nutrients can result in deficiencies, which could lead to loss of height, osteoporosis and delayed sexual maturation.”
Swim recommends establishing healthy habits early for children, including breakfast. “Having a healthy breakfast enhances brain function related to memory, testing and school attendance. Having a high-fiber breakfast with protein, fruit and a low-fat dairy is a great way to start the day off. An example of this could be a whole-grain English muffin with an egg patty prepared using a cooking spray and sliced avocado – the perfect quick breakfast sandwich.”
As children mature into teenagers, Swim said they need diets that provide proper nutrients and fuel. “Many teens will double their weight and can add up to 20 percent in height, and they need to make sure and get enough nutrients like calcium to support healthy bone growth. Teens will continue to have growth spurts, and it’s important for them to remember that their body needs food to help fuel healthy growth, especially if they are an athlete. But food for fuel is also important for those active with music or art. Their brains are working to hardwire their ability to process the skills needed for all activities.”
Parent should keep taste and appearance in mind when preparing meals, Swim said, as they seem to be important factors to teens. “Health and energy needs don’t matter so much to (teens), so as parents we need to provide those healthy choices in a way that is pleasing to eat and look at.”
Staying hydrated is also important as children and teenagers begin participating in sports and other activities. Swim recommends drinking two, 8-ounce glasses of water two hours before an event, as well as sports drinks during and after an event as a way to stay hydrated.
“Sports drinks provide fluid, carbohydrates and electrolytes during extreme exercise,” she said. “This helps provide fuel for muscles, help maintain blood sugar levels and quench thirst. They also help to prevent dehydration. For specifics on what you or your student-athlete need contact a registered dietitian who is a board-certified specialist in sports nutrition.”
For families on the go to, Swim said planning is a way to keep eating healthy. “Every sporting event has a schedule. Take time once a week to map those out on a calendar and then sit down with the family to see who can help out where. Also, think about preparing extra on nights that you can cook. Then you just need to heat something up. Using the crockpot can be a lifesaver, then dinner is ready when you get home.”
For late night events, she said prepare sandwiches when possible and keep snacks handy such as whole fruit, apples, bananas, oranges, walnuts, almonds and skim mozzarella string cheese.
Swim said parents must also keep in mind that males and females mature differently and to alter their diets accordingly. “Because girls and boys mature at different ages and their growth spurts occur at different times, there are separate calorie needs. For example, as girls mature one place to focus would be on getting enough iron. The body uses iron to make hemoglobin, the part of the red blood cells that carry oxygen.”
Swim said multi-grain rice with salmon and dark green salads are ways to add iron into meals, but recommends contacting a pediatrician or registered dietitian for diet needs.
TAHLEQUAH, Okla. – Sequoyah High School is once again participating in the U.S. Department of Agriculture Summer Food Program. It will run May 29 through June 28, Monday through Thursday, at the SHS cafeteria.
The program provides nutritious meals at no charge to children during summer vacation.
Children aged 18 and under regardless of race, color, national origin, sex, age or disability are eligible to receive meals. Breakfast will be served from 8 a.m. to 9 a.m. and lunch will be from noon to 1 p.m. Adults may eat breakfast for $2.25 and lunch for $4.
The cafeteria is at 17091 S. Muskogee Ave. For more information, call 918-453-5190.
TULSA – Cherokee Nation clinical dietitian Tonya Swim was awarded “Outstanding Dietitian of the Year for Outstanding Career of Contributions to the Dietetics Profession” on April 19 at the Oklahoma Academy of Nutrition and Dietetic Convention.
Swim, who works at the A-Mo Health Center in Salina, is involved with the OkAND organization as public relations and communication chairwoman and has helped increase its social media presence by promoting registered dietitians as nutrition experts and renewing a partnership with Oklahoma City Fox News by coordinating weekly cooking segments.
She also served as chairwoman for the 2018 OkAND convention and chaired the event in 2016. As chairwoman, she worked to provide Oklahoma’s registered dietitians and dietetic technicians with opportunities for continuing education.
“It was an honor and I am humbled to have received this award. I give most of the credit to the amazing group of dietitians in our state for helping my ideas become reality and to the wonderful company I work for in allowing me to grow as a dietician. I am so blessed with a supportive family who push me to be the best I can. Thank you to everyone,” Swim said.
SALLISAW – When Cherokee Nation citizen Shacotah Sanders lost his hair after undergoing chemotherapy for Stage 2 Hodgkin lymphoma last year, his mother, Tammie Simms, shaved her head in solidarity.
“Chemotherapy is a really long process. It’s painful. It’s stressful. It’s really emotional because I lost all my hair,” Sanders said. “That was something I was really scared of right there, but the main thing that keeps me going is my mom. She’s like the only one that really keeps me going.”
This familial support is once more a shoulder for Sanders to lie on because while his hair has grown back, so too have the cancerous spots in his neck. It is a possibility that he had accepted after going into remission in October.
“I had prepared myself for it because there’s always that possibility that it could come back,” Sanders said. “Every three months I have a checkup, a PET scan, and we decided to do one in early March this year. We did it, waited about two weeks to get the results. We went back to my oncologist doctor, and he said that it came back, but it wasn’t as big as last time and not as bad. He said it was in the same spot and at the same stage, Stage 2.”
Sanders began undergoing 22 rounds of radiation on April 3 to again battle the cancerous disease, which starts in the white blood cells called lymphocytes. It causes uncontrollable cell reproduction that can potentially invade other tissues throughout the body and disrupt normal tissue function, according to the American Cancer Society.
Sanders travels from Sallisaw to Tahlequah’s Northeast Oklahoma Cancer Center five days a week for his radiation sessions and will have checkups every three to six months after the treatments.
“The radiation, they take you to a back room with a really big machine and you just lay on it, like a flat surface, and then they put a mesh mask over your face and tilt your head back so they can get to the spots where the cancer is. There’s no needles involved or anything. It’s just a big machine shooting radiation down on your body,” he said.
The first time Sanders noticed something amiss with his health was in March 2017.
“Every time I went running I noticed my breathing was off quite a bit, so I was just feeling around on my neck and I found these lumps on the right side of my neck, below my jaw. It was just affecting my breathing a lot, so I went to the doctor and had them check it out,” he said.
After a PET scan and surgery, doctors removed two of Sanders’ lymph nodes.
“They sent them off to be tested and they came back cancerous. They told me it was Stage 2 Hodgkin lymphoma and we started treatment last year in April,” Sanders said.
Doctors prescribed Sanders four rounds of chemotherapy at Warren Clinic Medical Oncology in Tahlequah.
“I was supposed to do four, but three rounds did it,” Sanders said. “During that time, I still went to work, and I didn’t feel good at all going to work, but I still worked my eight hours a day. I still went to work, put a smile on my face. I had a really good attitude about it.”
Though the cancer has returned and forced Sanders to put classes at Carl Albert State College on hold while continuing to work, he remains positive and recommends anyone going through a diagnosis to do the same. “Just have a positive attitude about everything. Surround yourself with positive things, people, family and friends,” he said.
Sanders has a GoFundMe account to help with expenses. To donate, visit <a href="http://www.gofundme.com/hodgkins-lymphoma-fight" target="_blank">www.gofundme.com/hodgkins-lymphoma-fight</a>.
<strong>Symptoms and Info</strong>
Possible symptoms of Hodgkin ymphoma include fever, drenching night sweats and weight loss constituting at least 10 percent of a person’s body weight over the course of six months, according to the American Cancer Society. For more information, visit <a href="www.cancer.org/cancer/hodgkin-lymphoma.html " target="_blank">www.cancer.org/cancer/hodgkin-lymphoma.html</a>.
TAHLEQUAH – Northeastern State University’s Oklahoma College of Optometry goes back 39 years in its relationship with the Cherokee Nation and in providing Cherokees eye care.
NSUOCO works with nine CN clinics, also known as Rural Eye Programs, in Tahlequah, Sallisaw, Stilwell, Jay, Salina, Vinita, Nowata, Muskogee and Ochelata and services 40,000 to 60,000 patients annually.
Its first graduating class was in 1983 and has since averaged 28 graduates annually from its four-year doctorate program.
The NSU campus clinic contains 20 exam rooms and specialty clinics for dry eye, contact lenses, low vision, vision therapy and infant vision clinic. If a REP is unable to provide a type of eye care, patients are sent to the NSU clinic for further evaluation and treatment.
Nate Lighthizer, NSUOCO Continuing Medical Education director and doctor of optometry, said the college has seen patients from 2 months old to 102 years old.
“We all have different vision needs. That’s one of the beauties of having a college is we have 35 faculty members that are either here, in (W.W.) Hastings (Hospital) or in the REPs, and a lot them have different interests. We have doctors that specialize in infant vision and vision therapy. They’re the expert in the 6-month-old and the 2-, 3-, 4-, 5-year-old. Other doctors, they’re the expert in the 80-year-olds,” Lighthizer said.
He said students begin in “didactically heavy” classes, building foundations and learning about systemic diseases, eye diseases, procedures when giving primary care, looking at the eye with microscopes and other program aspects.
He said students begin seeing patients at the end of the second year and into the third year.
CN citizen and fourth-year student Seth Rich said he applied for the NSU program because of the experience it would give him treating patients by the time he graduates.
“I’m from this area, so I wanted to serve basically in the population that I grew up in. Here at NSU we see more patients compared to any other optometry school by the time we graduate. We have more patient interactions that any other optometry school is going to have and more clinical experience because we start seeing patients a year early than most other schools,” he said.
Rich said he also has experience using the REPs and seeing the eye care needs among Cherokees.
“We deal with a lot of diabetic patients here at Cherokee Nation, and that has a really large effect on the eyes. Being able to be in this area and serve a population that has a huge need for us is a big deal because I personally have a lot of family ties to this area want to be in a community where I feel like I’m going to be contributing and giving back and helping the overall health of the population with health and exams,” he said.
Rich said the program prepares students to “go out into the real world” and treat patients of any need. “I feel very confident going out into the population and serving basically anybody that walks in the door.”
CN citizen Tara Comingdeer Fields, who is in her first year at NSUOCO, said she chose the program because of her area ties. “It’s not specifically just Cherokee Indians that I want to serve, but overall Native Americans. My background is I grew up in a traditional family, so the medicines and traditions that we did just kind of stuck with me, and now I want to help people.”
Comingdeer Fields and Rich are recipients of Indian Health Services scholarships for optometry and will work under an IHS contract upon graduation.
Lighthizer said CN citizens make up between 10 to 15 percent of the NSUOCO’s students and that it’s usually rewarding for a Cherokee to grow up using CN eye care services and then go through the program and become a provider. “It’s just a very mutually beneficial relationship between Cherokee Nation to be able to have all of these patients seen and then obviously for the education for students to be able to see patients and hone their skills.”
SANTA ANA PUEBLO, N.M. – The Notah Begay III (NB3) Foundation, with a grant from the Comcast Foundation and in partnership with Cultivating Coders, is accepting applications for a national competition for Native youth to design a mobile app focusing on improving the health and nutrition of Native youth – designed by Native youth.
The competition is open to individuals or teams of Native youth, ages 13-18, experienced in coding, design and digital media and/or mobile technology.
Participants must submit a completed application with supporting documents that includes a four-page outline and video of the app. Contest applications will be accepted until July 1. Learn about the contest criteria, eligibility and application process at: <a href="http://www.nb3foundation.org/healthy-kids-healthy-futures-app-contest/" target="_blank">http://www.nb3foundation.org/healthy-kids-healthy-futures-app-contest/</a>.
“The NB3 Foundation recognizes that more and more Native youth are using their mobile devices and APPs to track their physical activity, nutrition and even water intake. This competition is an integral step for the Foundation in the direction of connecting youth with technology to build healthier lifestyles,” NB3 Foundation President and CEO Justin Kii Huenemann, said.
The contest’s intent is to engage and challenge creative and tech-savvy Native youth from across Indian Country to think creatively, culturally and digitally about their diet, nutrition, exercise and fitness; and turn that knowledge into a solution or problem-solving mobile app that may be used by the NB3 Foundation.
A panel of NB3 Foundation staff and experts will choose a first-, second- and third-place winners. The first-place winner will proceed to work with Cultivating Coders, a software company and social enterprise focused on priming the next generation of coders to develop, design and implement their own solutions to address their local challenges, to further develop the app into a minimum viable product.
For more information or questions about the application process, email Simone Duran, NB3 Foundation program assistant, at <a href="mailto: email@example.com">firstname.lastname@example.org</a> or call 505-867-0775, ext. 104.