“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.”

When you think of a Cook Children’s patient, it’s just natural to think of a tiny baby girl who’s only lived in our NICU or a first grader in the Child Life Zone playing with Ralph just like his own dog at home. It’s especially true that Cook Children’s strives to make our patients’ stay as close to “normal life” as possible.

That balance between normalcy and medical treatment is achieved because employees are quick to squat down to their level to talk with words that make sense or to play a game and make them smile.

But finding that right balance is much different when that patient is a young man or woman dealing with a cancer diagnosis. Their lives become a new balancing act of making adult decisions, whether medically, professionally or personally. The AYA Program at Cook Children's helps teens diagnosed with cancer and their very unique needs.

The National Cancer Institute defines Adolescent and Young Adult Cancer as cancers occurring between the ages of 15 and 39, with an estimated 70,000 diagnosed each year. Even within that broad range of ages, their needs and expectations from caregivers may vary but one thing is constant: a desire to be treated like an adult.

Corey Heath, psychologist for the AYA Program at Cook Children's, says, “We recognize that AYAs are not just ‘big kids’ or ‘little adults.’ We assure them that their voice and experience is important and help them understand that they are not defined by their diagnosis.”

And when it comes to that diagnosis, this AYA team adjusts their approach to reach them. Allie Barnes, RN, explains, “It’s not always easy to switch back and forth between a 2-year-old and a 17-year-old within your same patient assignment, but our nurses do it effortlessly. By being upfront, respectful and honest about everything and using proper verbiage, they are quicker to adapt and warm up to their treatment on our floor.”

Karen Albritton, M.D., Medical Director of the AYA Program, adds, “Young adults with cancer are quite busy trying to both deal with their health issues and trying to hang on to what’s left of their normal life. And it can be hard to convince them that spending time with other young adults with cancer or tending to their emotional health (via work with an AYA psychologist or other practices like journaling, creative arts, exercise, meditation) will be worth it.”

But such challenges to reach through to them can be the most satisfying part, according to Child Life Specialist Laura Sonefeld. She explains, “Those moments when these AYA patients let me get to know them just a little bit at a time, they open up about their experience, they tell me about their home life, are those moments that I treasure. I am honored to be that kind of a support for these patients, who simply want to be home or at school with their friends, like any teenager.”

Dr. Albritton sums up what she views as the goal for all of Cook Children’s for these AYA patients, “I am deeply grateful for the strong core group of individuals on our team who are passionate about helping young adults, and about educating other providers to tweak their practices in ways that will enhance their care of this population. I really see our goal to make all providers at Cook Children’s members of ‘the team’ so that anywhere an AYA is in the hospital, they feel our providers give them age-appropriate care.”

About Cook Children's Adolescent and Young Adult Program

Navigating the teen and early adult years and finding the place where you fit in can be pretty challenging. Add cancer to the mix and suddenly the road feels lonely and long. Our AYA patients face these obstacles every day, and we are constantly in awe of the amazing dignity, grace and humor they bring to their journey – much of which is spent right here at Cook Children's Medical Center. Click to read more.

In August of 2013, Joshlynn was diagnosed with Ewing’s Sarcoma, an aggressive bone cancer, occurring mainly in childhood and adolescence. Suddenly the 19-year-old single mom faced a whole new set of challenges.

“I was afraid my life was over,” she said. “I was afraid of what would happen to my daughter if I wasn't there. My little girl is my life. I thought, ‘Why me?’ Everything you could possibly think of went through my head. I had no idea how bad or what it was until we did tests and scans. I learned no matter what to be positive and you will make it.”

Joshlynn knew she wouldn’t go through her journey alone. In her home of Mineral Wells, Texas, she has her parents and four siblings. Although, they’ve been there for her, Joshlynn said her diagnosis placed a strain on everyone.

“At first it was really hard for everyone to accept that I had cancer,” she said “Everyone was afraid to talk about it or even ask questions because they didn't know how I would feel about it. But for me, talking about it helps me. And now my family, my closest friends and I are closer than ever and they really support me.”

While family and friends supported her, only those with similar experiences could truly understand Joshlynn. She struggled with the news of the cancer and mainly the impact it would have on her little girl.

“Being away from my daughter so much for treatment has been the toughest part,” she said. “Zoey is still young so she doesn’t quite understand why I'm gone all the time and it really hurts me. It’s hard when I’m home too because I’m sick and not able to do things by myself like I use to.”

Joshlynn found not only treatment for her cancer, but support from peers at Cook Children’s. She describes her physician, Karen Albritton, M.D., as “absolutely amazing.” Dr. Albritton is the medical director of the Adolescent and Young Adult (AYA) Program in the Hematology and Oncology Center at Cook Children’s.

“Dr. Albritton truly cares and understands all her patients,” Joshlynn said. “Cook Children’s is an amazing place. They gave me strength and courage to beat this. Everyone in the AYA program has helped me out so much. They have changed my life. It's really amazing to have people that know what you’re going through and understand you, when sometimes your family can't.”

For now, there’s one family member that doesn’t understand everything that Joshlynn’s going through and that’s just fine with her. Zoey will someday understand how her mommy battled cancer.

“It's really hard at times. Having cancer and doing treatments and being gone so much never gets easier,” Joshlynn said. “My daughter makes me want to fight and beat this even more. You have to keep a positive attitude, and know that no matter what, just believe in yourself.”

After all, that’s the attitude that makes fighters great.

Today, we give you a look into the lives of Galen and Taylor. Both are connected as not only TCU sorority sisters, but cancer patients and members of the Adolescents and Young Adults (AYA)  program at Cook Children's. 

Galen Storey is a 21-year old student at TCU. She was diagnosed with cancer in December 2014. She has allowed us to use one of her blogs to give an inside look at her fight against cancer and then Taylor, who is 18 and also at TCU, gives us insight into what the AYA Program has done for her with a video blog.

Each year about 70,000 Americans between the ages of 15 and 39 learn they have cancer. Here are two young people who have allowed us to share their stories.

Fighting cancer with Grace

The day I went in for my first chemo treatment at Cook Children’s, the doctor had a meeting with me to prepare me as best as he could. For my cancer there is a certain protocol/regimen that consists of treatment different chemo meds, 42 treatments of weekly chemo, and radiation for about 6 weeks (starting at week 15).

Holy crap.

The doctors can go over every side effect in the book and then some but there are some things they can't prepare you for. My friend Grace said it best when she said, "There is no guidebook to cancer" and it's so true. Shout out to Grace for being my built-in therapist. One day people will have to pay her to tell them how they feel and I won't.

I've thought about this post for a while and about certain things that have happened that I wasn't fully prepared for. I've decided I could make a booklet filled with these things but instead I have narrowed it down to a few I will share with y'all:

If they could also give you a step by step plan on how to tell someone you have cancer that would've been sooo Gucci because let me tell you, it is awkward. Grace and I kinda laugh about it now because she's had to break the news to more people than I have.

There's no easy way to do it. It's a bomb, a word bomb and you kinda just have to say it, "I have cancer" and the people we're talking to more times than not gets an awkwardly sympathetic, but at the same time terrified look on their face. But I have to remind myself I wouldn't know what to do if someone dropped that bomb on me.

He told me I would lose my hair. I knew I would lose my hair, but I still wasn't prepared for how it felt when I pulled a chunk of my own hair out of my head. Buzzing it off still feels like a surreal experience and sometimes I have to remind myself that I'm bald. (That's for a whole other blog post though.) They also don't tell you that you will lose your nose hairs … like what? ... But y'all nose hairs are important. I miss them. Not having nose hairs means your sinuses get super dry and irritated and you get the most annoying headaches. Be thankful for your nose hairs people!

They tell you that you will feel weak and sick and have no energy, but other than that they can't explain how it will really feel. Thinking about it now, it's hard to explain myself. The days after chemo feel like a nasty hangover … minus the fun night before. The weakness is from a mixture of nasty meds and weight loss. The other day I got a pan of brownies out of the oven and could hardly lift the thing. I think the strength I had to get it out was fueled by my chocolate craving. Having no energy is really hard for me. Not that I was super active before cancer but being so tired that I get out of breath walking from one end of the house to the other is hard. I see people on runs outside and I get jealous. Never in a million years would I have thought I would be jealous of someone running.

They don't prepare you for the emotional rollercoaster that you involuntarily get in line for the day you are diagnosed with cancer. They say "you will have good days and bad days.” They should tell you that bad days begin when you wake up from good dreams to remember that you're sick. On bad days you will want to hide under the covers and cry. On bad days you can't eat or sleep or even walk. Bad days will drain you. Good days will fill you up again, with visits from friends and good weather and pizza and a simple trip out of the house. I cherish the good days and try to find joy in simple things like cheese fries

Needles. You'd think I'd be used to them by now … Nope.

Lastly, I wasn't prepared for the support I have received. I wasn't prepared for you, you people reading this and praying for me and keeping in touch with me.

From day one I was overwhelmed by the texts I got from people … most of which I forget to respond to, I'm the worst texter … I'm sorry! But a simple text is one of the things I find joy in. I am amazed every day by the people that reach out to me, people that don't even know me, people that have been affected by my words or affected by cancer themselves. I have a drawer full of the cards that I've gotten and soon that drawer won't be big enough.

If beating cancer was a sport it would be a team sport. I don't think anyone can truly do this alone and I am so beyond grateful that I don't have to.