“She was very athletic. When the pain began in her knee, we chalked it up to a sports injury,” said Abby Jackson, Danakah’s grandmother.

It was 2016 and Danakah was living with her grandparents in Covington, Texas. She was in the ninth grade and, like most teens, couldn’t wait to get her driver’s license. She was a normal kid, but within a matter of months her life would be turned upside down.

“In February, she started complaining about her back hurting. I took her to the doctor and he put her on some pain pills,” said Abby. “We figured she twisted it or pulled a muscle.”

Then Danakah began losing weight. She lost 15 pounds in less than 10 days. It also became difficult for her to breathe. Her doctor knew something was going on and ordered a round of scans. An MRI examined her lower back and a CT scan offered a glimpse into her chest. There it was in black and white – a tumor was clinging onto Danakah’s spine.

“We knew she had cancer. When the CT of her chest came back, they found eight different tumors in her lungs,” Abby explained.

The next day, Danakah and her family made the hour drive to Cook Children’s Medical Center in Fort Worth, Texas. She was admitted to the hospital immediately. Her new doctor, Karen Albritton, M.D., medical director of the Adolescent and Young Adult (AYA) program at the Hematology and Oncology Center, wasted no time getting to work.

“They did a biopsy of a bump on the top of her head. They also found more tumors. There was one under her left eye, one beside her right eye and one in her right leg,” said Abby.

The tumor in Danakah’s leg stretched all the way from her knee cap to her hip bone. Abby suspects it had been growing since her granddaughter first mentioned her knee pain back in the fall.

“It was so much easier to say where the cancer wasn’t. It wasn’t in her brain. It wasn’t in her heart or her colon or her intestines, but she was, head to toe, eat up with it,” said Abby.

Sadly, the cancer was in her blood stream and her bone marrow. Danakah was diagnosed with Ewing Sarcoma and started chemotherapy. She spent most of 2017 in the hospital. Even though she was missing her friends and school, Danakah was able to keep a positive attitude – something her nurses say helped draw them close to her.

“I was fairly new to my job when Danakah was diagnosed,” said Johanna Sargent, Hematology and Oncology nurse. “She was my first teenage girl to take care of and she was so full of life.”

Johanna and fellow nurse Aly Norris spent a lot of time with Danakah during the course of her treatment. They would play ping pong with her in the AYA lounge, walk laps with her around the unit or just spend time talking about her friends, family and hopes for the future.

“She was so funny. Sometimes, in the middle of the night, she would come over to the nurses’ station and show us magic tricks with a deck of cards,” remembers Aly. “She always had us laughing. Danakah was such a light.”

It wasn’t long before the chemo took its toll on Dankah’s hair. While most teenage girls couldn’t imagine going bald, Danakah took it in stride. According to her grandmother, Danakah insisted she wasn’t going to wake up each morning looking at the hair that had fallen out on her pillow. She decided to shave her head instead.

“I remember the day she walked out of her room and she was like ‘look!’” said Johanna. “I went over to her and started rubbing her head and telling her how much I loved it. I think she was a little apprehensive to do it but once it was done, she was so happy.”

Aly remembers when a Child Life specialist brought craft supplies to the floor. Danakah insisted that Aly participate, which she says is ‘just like Danakah.’

“I came to her room and she had two canvases and she told me we were each going to paint a word. She had decided the word would be ‘Daly’ because it was a combination of our names,” said Aly.

Despite her cancer, Danakah was always looking ahead. She was optimistic and sure she was going to get better and get her driver’s license. But by Christmas, her health had taken a turn for the worse.

“We almost had her lungs completely clear when three more tumors popped up,” said Abby.

One of the tumors caused bleeding near her lungs so a chest tube had to be inserted to remove the blood. Danakah was very sick and placed in the Pediatric Intensive Care Unit (PICU).

“She always had a happy attitude about everything but she was in pain,” said Abby.

Abby left her granddaughter around 11:30 p.m. on Jan. 24, 2018 to sleep in her room on the H/O floor. She told her to rest and she would be back soon. In a matter of hours, Abby was awoken by a phone call.

“They told me they had to put Danakah on a ventilator. We lost her at 1:30 that morning,” said Abby.

Danakah remained on the ventilator while the rest of her family traveled to Fort Worth. There were about 30 people in her room when she was removed from the breathing machine. She died on Friday, Jan. 26.

Among those who came to came to say their goodbyes was Ralph, her favorite therapy dog.

“She and Ralph had a special bond. I have a picture of them, both with their mouths open. They were so happy. That’s the photo we used in her memorial,” said Abby.

Johanna was also able to say her goodbyes. While in the PICU with Danakah’s family, someone handed her a bracelet asking it be returned to Aly.

Originally a gift from Aly, Danakah had been wearing the bracelet when she passed.

“On one of her last days on the H/O floor, Danakah asked to have something to remember me by. I said ‘let’s not talk like that’ and she ‘no, if we have something of each other’s then we can be together wherever we go,” explained Aly.

That night Aly went home and found two bracelets. One for her and one for Danakah.

“I keep her bracelet on my key chain as a reminder of her and why I’m a nurse,” said Aly.

Both Aly and Johanna say it’s often uncomfortable when people ask what they do for a living. Most people think being a nurse in a pediatric cancer unit is ‘depressing’ but neither see their careers that way.

“Honestly, our kids bring so much joy into our lives. It’s an honor to be able to be there for these families during such an intimate time,” said Aly. “Being a nurse is more than just medicine. It’s also about loving the kids and helping their families along the way.”

Johanna agrees, saying “I know people are afraid of what we do because they think it’s sad, but it’s not sad. You develop relationships with the patients and their families. Every single one of those kids leaves a mark on you.”

While it’s been nothing short of a difficult journey for Abby and her family, she says she’s thankful for all who cared for Danakah through her illness, especially the nurses.

“It takes someone special to work with children, and to work with children with cancer is even harder. They never let the situation get to them. Every nurse on the H/O floor deserves a raise. They are just wonderful people. We were blessed to have Danakah as long as we did.”

Ewing, who plays Dylan on the hit comedy Modern Family, opened up about how he obsessed over his looks in a recent op-ed piece in the Huffington Post. He says that he has faced eating disorders, depression and body dysmorphic disorder, a condition he describes as a “mental illness in which a person obsesses over the way he or she looks.”

Reid said that he would take pictures of himself, analyzing his looks, before deciding he needed plastic surgery. He said he felt ugly and that his looks were unacceptable.

Reid describes in great detail the horrible pain he went through during his initial surgery, cheek implants and yet felt the need to do it again. He says that no one gave him a mental evaluation, except to ask if he suffered from depression (he did), to learn of his history of eating disorders.

Joy Crabtree, PsyD., a psychologist at Cook Children’s, says that the insecurity and body dysmorphia often develops during adolescence, and they become more unhappy as they get older. In some situations, the discontent may develop in childhood, and start with a specific dislike for a certain part of their body or over focus on a perceived flaw.

“I like how the article makes the point that therapy is a great place to start before jumping into big cosmetic surgery decisions,” Crabtree said. “I think standard protocol requires some level of psychological screening for most bariatric surgeries as well.”

Crabtree says people sometimes don't think of boys dealing with these body image issue, but she treats boys struggling with eating disorders and their own looks.

One in 10 of those diagnosed with eating disorders are male. Moreover, nearly a third of adolescent boys participate in unhealthy weight control techniques, like skipping meals, smoking cigarettes, vomiting or taking laxatives (National Association of Anorexia Nervosa and Associated Disorders). The American Psychological Association says males are less likely to seek treatment for an eating disorder due to the perception that it is a disease that only affects women, but the shameful secret isn’t just a girl thing.

Issues with eating and problematic concern over weight usually begin during adolescence or young adulthood. According to Joy Crabtree, PsyD., a psychologist at Cook Children’s, “This is typically a higher time of stress in general, and also a time when bodies are changing quickly or rapidly; this creates more discomfort with their self-image. Additionally, sometimes males are involved in sports where there is a focus on either gaining or losing weight, which can contribute to eating challenges as well.” Crabtree notes that eating disorders tend to occur among those who have perfectionist tendencies. “Increased stress can be a contributor, as well as unreasonable goals or ideals for meeting or maintaining a certain weight in order to participate in certain sports,” she observes.

To tackle the issue, Crabtree says schools should make their staff aware that males can suffer from eating disorders in addition to female students. Coaches and athletic personnel should be careful not to set unrealistic standards for their athletes and reach out to students and their parents if they see unhealthy patterns developing. In the meantime, though, the responsibility to identify problematic concern over weight or an unhealthy relationship with food lies with a boy’s parents.

Parents need to remember that eating disorders can be even more problematic in young men due to their reluctance to come forward. Watch for boys who develop a focus on eating only “healthy” food, counting calories, step on the scale a little too frequently or exercise excessively. Crabtree recommends “ensuring your family has a healthy focus on body image in general without a frequent or specific focus on weight, food intake, calorie counting etc. Try to stress balance in food intake and activity or exercise for overall health.” In addition, get input from your primary care physician regarding whether your child is in the average weight/height range or needs to focus more on eating a more balanced diet.

For boys diagnosed with an eating disorder, the treatment approach would not necessarily be different than it would for a girl. Crabtree stresses, however, that “the clinician must be aware and sensitive to the fact that they may be more avoidant or resistant to treatment in general, as well as less inclined to be open or honest about the issue as it is not as frequently seen as a male issue or concern.” Parents can help their teenaged boys to gain perspective on what is typical or average and what is extreme and unhealthy. Just as with young girls, it is important to stress that the celebrities they see on television or in the media are not typically “average” bodies. Parents can’t change societal pressures, but they can foster healthy behaviors and a realistic outlook on body image within their own households.

About the author

Natalie Raymond is an associate marketing specialist at Cook Children’s. She graduated from Texas Christian University with a Master of Science in journalism and certificate in business in 2014, and has a background in strategic communication and health care communication. Natalie enjoys doing her part to help our patient families stay healthy and spends her spare time with her eight furry friends (also known as pets).