Marlee Munguia has a rare cancer that wasn’t responding to standard chemotherapy when she was first diagnosed at age 3.

But her doctors at Cook Children’s had other strategies to try, including immunotherapy and two stem cell transplants. Thanks to those treatments – along with radiation, surgeries and scans over the past three years – Marlee has a healthier and happier outlook. 

Now age 6, she still needs treatment for neuroblastoma, a type of cancer involving nerve cells.  Cancer, however, doesn’t define her. Marlee rests up after each medical procedure or inpatient stay at the medical center in Fort Worth. Then she resumes her full schedule of play, horseback riding and representing Cook Children’s as a patient ambassador. 

Marlee shines in her role as ambassador, which suits her outgoing personality and chatty friendliness. She attends charity events, poses for publicity photos and even spoke on the radio to share her love for Cook Children’s. As her mom puts it … Marlee is social as a butterfly and fierce as a lion.  

Those ambassador duties put Marlee and her family in the spotlight to help promote The Blast fundraiser. The Blast is a 5-kilometer walk on April 6 benefitting the Cook Children’s Hematology and Oncology Center.

And it’s a cause close to the hearts of Marlee’s parents, Lani and Mason Munguia. That’s because every dollar donated at The Blast brings more research, clinical trials and treatments closer to home for cancer patients in North Texas and beyond.

“Without these newer drugs that require research and research money, Marlee wouldn’t be here today,” Lani said. “We need new drugs and less harsh drugs that don’t cause so many side effects. We can’t do that without research.”

Cancer therapies work by destroying the cancer cells, but they often cause brutal side effects to the rest of the body. Marlee lost much of her hair, eyebrows and eyelashes. At times she couldn’t eat because of vomiting and the sores in her mouth. One of her transplants led to septic shock and a rare liver complication, putting her into the pediatric intensive care unit (PICU).

Cook Children’s oncologist Chelsee Greer, D.O. points out that just 4% of the annual federal budget for cancer research goes toward pediatrics. Financial donations help close the gap and can lead to development of new therapies that take less of a toll on children, she said. 

“Patients and families deserve more options, and that’s why it is so important to continue ongoing research and clinical trials,” Dr. Greer said. “It’s also important that the community help support organizations close to home, like Cook Children’s. Donations to our hospital help families here in DFW and across the state of Texas.”

About 15,000 children and adolescents are diagnosed with cancer each year in the United States, according to the Centers for Disease Control and Prevention. As therapies improved, cancer death rates among those 14 and younger have dropped nearly 70% over the past 40 years.

The Blast aims to raise awareness and salute everyone touched by childhood cancer. What inspires the mission? “Together, we’ll walk in celebration of the children who have fought and won, in remembrance of those who have passed and in hope for a world in which pediatric cancer does not exist.”

Team Marlee Strong will be out in force for The Blast. Her supporters include Munguia family members, friends and baseball players from Fort Worth’s Chisolm Trail High School, where Mason coaches. Here’s more of Marlee’s story, and information about ways you can join The Blast to help #blastawaycancer.

Resilience and Hope

Marlee began getting sick frequently when she was 3. In January 2021, severe pain sent her to a hospital in Odessa, her hometown, where doctors found a mass growing in her chest and abdomen. The main tumor was behind her heart, wrapped around the aorta and blood vessels that supplied the spinal cord.

It was too stormy to fly, so an ambulance took her right away to Cook Children’s Medical Center – Fort Worth. Chemotherapy started a few days later. Marlee needed a round every 21 days, staying in the hospital for at least a week afterward to be monitored.

Mason and Lani wanted to remain close by because of how frequently Marlee would be admitted. So Mason’s student athletes and their friends in Odessa boxed up their belongings; the Munguias found local housing and now live near Saginaw.

“We never got to really say goodbye to our home. It was sold by a friend of ours who was a real estate agent,” Lani said. “We never went back for like a year.”

Marlee’s course of treatment since the beginning has included several surgeries, 12 chemo rounds and 18 days of radiation. During one point in 2021, she was hospitalized for an 80-day stretch that spanned Thanksgiving and Christmas.

For much of 2023, her scans looked good. She had the energy to swim, play tennis and start kindergarten. Treatments ended and her ports were taken out. But last September, cancer was found in her femur bone.

It was a crushing setback. But Marlee resumed her immunotherapy and radiation sessions with a spirit of resilience and upbeat positivity.

Lani says her daughter shows up for appointments with a smile on her face and a wave for everyone in the medical center’s hallways. Headed to a checkup one day, for instance, Marlee chose to wear a yellow dress and hairbow. A photo captures her sunny radiance. 

She’s very much at home at Cook Children’s. Visits with the staff – including the drama therapist, Child Life specialists and Sit … Stay … PLAY therapy dogs – make Marlee’s experience as good as it can possibly be, even during a painful procedure or on the days where she ran fever and had no appetite.   

The older she gets, the more she understands that the pokes and side effects of cancer treatment aren’t easy. But she considers Cook Children’s a place where she’s safe and loved. The Glitter Girls paint her fingernails, the nurses play Roblox with her, and Marlee sings for the staff.

The grateful Munguia family leans on prayer and their support system. And they return the love by doing what they can to help other families at Cook Children’s. One year they put together 10 holiday baskets with snacks, gift cards and toys for children spending Christmas in the Bone Marrow Unit. 

Marlee’s oncologist describes her as spunky and sensitive to the needs of other people.

“Even at such a young age she understands the importance of helping others,” Dr. Greer said. “During the difficult times she has the ability to spread joy. She and her family are always looking for ways to help.”

As an ambassador for Cook Children’s, Marlee raised pledges on the Radiothon. She decorated gingerbread as part of the Cookies & Castles fundraiser for the oncology department. Her picture made the Spring 2024 cover of the Cook Children’s Health Foundation’s Promise magazine.

 Marlee likes to share her pride in Cook Children’s, Lani said. These days she takes homebound lessons for school, enjoys horse camp and is asking for drum lessons. Marlee plans to join her team at The Blast as long as she’s feeling well enough.

Lani said making a donation for research means everything for children with cancer.

“And it gives them hope. If we don’t have hope, then we really struggle every day to get through this battle,” she said. “I think that’s why The Blast has been so important to me, because it gives parents and children hope when standard treatment isn’t working.”

More about The Blast

The 17^th annual The Blast will take place April 6, 2024, at Panther Island Pavilion in Fort Worth. Families and friends of kids like Marlee walk every year to find a cure for childhood cancer.

When a child is battling cancer, their family suffers as well. Parents often must spend days and weeks away from work and their other children as they support their child through inpatient admission. Siblings struggle with feelings of loss and loneliness.

You don’t have to know someone who has been affected by childhood cancer to get involved. The Blast is a way to stand with these families in their hope for a brighter future. Show your support by signing up to walk, making a donation and spreading the word.

Visit blastwalk.org to sign up for The Blast 2024 today.

RELATED STORIES:

• The Blast Builds on a Promise, Fighting for a Cure 
• Twelve-Year-Old Defies all Odds, Achieving Remission from Back-to-Back Cancer Diagnoses

He was just days away from his second birthday in August 2016 when his mom, Arielle, noticed something was wrong with his arm.

"I thought it was broken. We took him to the emergency room and I thought he was just going to need a cast and we would go home," said Arielle.

Instead, Arielle and her husband learned that Adam had neuroblastoma. The cancer was eating up the bone in his arm and had spread throughout his little body.

"The whole scan looked like someone took a highlighter to it, that's how much cancer there was," she said.

In the months that followed, Adam went through seven rounds of chemotherapy, 12 rounds of radiation, two bone marrow transplants and a surgery to remove a tumor that had developed near his left kidney.

Today, Adam has no evidence of cancer in his body. He's in his last phase of treatment and if all goes well, he could officially be deemed cancer-free by February.

"It's scary because he carries a gene that makes it possible for the cancer to come back anytime, but we try not to think about that," said Arielle.

Helping to ease that worry is a new member of the family. Arielle gave birth to a little girl earlier this month, making Adam a big brother for the first time.

"Her name is Maddison Paige," said Arielle. "She has made everything better and we are so happy she is finally here."

About #erasekidcancer

Each September, Cook Children's shares stories and raises funds in honor Childhood Cancer Awareness Month. The money raised for #erasekidcancer supports life-saving research, treatments, technology and programs for patients and families at Cook Children's in Fort Worth, Texas. Please help us create hope for kids, families and caregivers who are fighting every day to #erasekidcancer.

Spending Thanksgiving week in Illinois, surrounded by Ashley’s family, Josh knew this would be his chance to ask her to marry him. But before they could leave, their 4-month-old daughter, Harper, had an appointment with a Cook Children’s pediatrician.

“She had been spitting up quite a bit. We thought she was a reflux baby and might need a higher dosage of medication,” said Ashley. “We had no idea our world would come crumbling down in 72 hours.”

Their appointment was with Catherine Hampton, D.O. at Cook Children’s primary care location on Keller Parkway. She suggested an ultrasound to make sure an internal blockage wasn’t the cause of Harper’s problems. Though it would delay their trip, Josh and Ashley decided not to wait and booked an appointment for the following day. Little did they know this was the best decision they could have made. The results revealed a mass on the little girl’s pelvis. After a brief round of tests, Harper was diagnosed with neuroblastoma and admitted to Cook Children’s Hematology/Oncology Center in Fort Worth.

“Everything changed so fast. We weren’t really able to process what was happening to our family,” said Josh.

Just three days after her initial appointment, Harper underwent surgery to remove the tumor. By this time, both Josh and Ashley’s families had converged on Cook Children’s. Surrounded by love and support, Harper would spend the following week fighting to get better.

“We spent Ashley’s birthday at Cook Children’s and Thanksgiving,” said Josh.

By Thanksgiving Day, Harper had made a huge improvement. She came off of her IV, had her nasogastric tube removed and was finally able to eat formula again.

But that’s not the end of the good news.

“One night, while walking around with my parents, I noticed this beautiful spot lit up with Christmas lights. That’s when I got the idea in my head,” said Josh.

On Thanksgiving night, Josh took Ashley to that spot and got down on one knee. His mother was able to capture the moment Ashley said ‘yes’.

“The picture means a lot to us. To see a Cook Children’s sign right in the middle, some people may wonder what I was thinking,” said Josh.

“It’s a good reminder for us to be able to look back on what we’ve been through,” said Ashley.

Harper is home now after a whirlwind eight days. And she’s officially cancer free.

“The future looks bright for Harper. She will have to undergo scans regularly for the next three years, but we are hopeful based on the biology of her neuroblastoma that the cancer will not come back.” said Meaghan Granger, M.D., director of the Neuroblastoma and Stem Cell Transplant program at Cook Children’s.

Dr. Granger describes Harper’s case as an excellent example of primary care from the Keller-based pediatricians who pinpointed what can be a common symptom in a newborn as abnormal. She also says this is an exemplary example of the smooth and efficient communication that occurs in an integrated medical system like Cook Children’s.

“The parents called their pediatrician with the symptoms of projectile vomiting and had an ultrasound done within 24 hours. Then, they were able to see an oncologist and had surgery within a day. All of the patient’s history, exam and imaging were immediately visible through an integrated EMR which also saved time.”

Fortunately, Harper's tumor was in a location that allowed it to be completely removed without further treatment.

And then her parents pick up their little princess. She straightens her long wig and they head to the elevator, back to her room at Cook Children’s. It’s time for another round of chemotherapy as this 2-year-old fights one of the rarest forms of cancer known to science.

The reality of Kennedy Coke’s life may be even more of an adventure than her hero, Elsa. Even Disney’s Queen of Arendelle never faced the challenges of this little girl.

In late November 2015, Kennedy coughed all Saturday night and was running a fever on Sunday.

Of course these things always happen over the weekend and her parents, Wes and Jodi, decided not to wait until Monday to take her to their Cook Children’s pediatrician, Catherine Hampton, D.O. Instead, they took her to a nearby walk-in clinic, expecting to be in and out with an antibiotic.

Kennedy received a slew of tests for strep, flu and RSV. They all came back negative. Jodi became frustrated when they asked for a lung X-ray. But she gave the go-ahead just in case her daughter had pneumonia.

The X-ray came back inconclusive on pneumonia, but it was something else that left Jodi and Wes devastated.

“The X-ray showed us the picture,” Jodi said. “We learned later that it was a collapsed lung and that’s what looked like pneumonia. But they said, “Up here, there’s a mass and then we basically fell apart.”

The mass was on the upper right lobe of Kennedy’s lung. When Wes and Jodi returned home somewhere around 6 p.m., they called the nursing triage line offered to Cook Children’s patients. The nurse on the line comforted Jodi and made an appointment for Dr. Hampton at 10 a.m. the next morning.

Little did the family know they were beginning a journey that mirrored another tale beloved by children around the world. They would learn the true meaning of heart, brains and courage.

And they would learn there truly is no place like home and sometimes home can mean a children’s hospital that a little girl swears is her castle.

Heart

Wes and Jodi came home that evening and called their employers to let them know they wouldn’t be coming in to work the next day.

Dr. Hampton examined Kennedy and sent the family to Cook Children’s Northeast Hospital for new X-rays and examination. The images showed that Kennedy never had pneumonia and it was a collapsed lung that was causing her problems with coughing and breathing.

Unfortunately, it also confirmed the mass.

From Northeast, the Coke family headed to Cook Children’s Medical Center. Nancy Dambro, M.D., a Cook Children’s pulmonologist, discovered the lobe of Kennedy’s lung had probably been nonfunctional since birth.

Perhaps, it’s only purpose was to help doctors find the mass and in the process, save Kennedy’s life.

On Dec. 8, 2015, Jose Iglesias, M.D., FACS, FAAP, a pediatric surgeon at Cook Children’s performed the surgery that ended up taking Kennedy’s whole upper lobe of her right lung.

Doctors expected the mass to be a part of the congenital lung cyst, similar to what her father had removed when he was 18 years old.

But there was a 1 percent chance it could be a rare form of cancer known as Type II pleuropulmonary blastoma.

Most surgeons never see a case in their career. Only seven cases have been seen at Cook Children’s since 1992 and only about 470 total cases have been diagnosed in the world. Ever.

That would be the worst case scenario and that would be what the doctors found.

Wes and Jodi watched surgeons walk down the hallway that led to the waiting room. They saw thumbs up being given to other parents and they saw hugs and tears of joy. But the moment they saw Dr. Iglesias walking toward them, they knew the news was not good.

Dr. Iglesias told Wes and Jodi it looked like it was the rare form of cancer, but they would know for sure the next day.

On Dec. 9, while Kennedy was sleeping, Dr. Iglesias came in and crouched down next to the family.

“For the record, we love Dr. Iglesias,” Wes said.

“He’s another person at Cook Children’s who saved our daughter’s life,” Jodi said.

But that’s today. A year ago, the couple remained in a constant blur of bad news and confusion.

“We had our breakdown. I remember immediately saying things like, ‘I’m going to shave my head.’ What? I just didn’t know what to do,” Jodi said. “Thankfully, my mom was there and she was a lot more level headed than we were at the time. She was the one writing things down. I remember a chaplain was there. That was so impactful to me. She was the chaplain for the recovery room and she just stood there, with us.”

Within minutes after being told it was cancer, the family was whisked off once again. Kennedy was taken to the Hematology and Oncology floor of Cook Children’s. The night of Kennedy’s diagnosis, the phone rang in their room.

“Jodi, it’s Dr. Hampton. I’m coming out there. I’ll be there.”

“Dr. Hampton has been very supportive of our family,” Jodi said. “When she came out here, she brought her Bible with her. She never opened it, but just held it. She said, ‘I don’t even know what to say to you guys.’ We were her first patient in her practice who had cancer. I think it hit her pretty hard. But she’s been just amazing ever since. We text her every time we have an update with our scans. She always replies back. We love her.”

On the day of the diagnosis, Wes and Jodi met a new doctor. Anish K. Ray, M.D., became Kennedy’s oncologist and has been at the head of her care ever since.

If you want Kennedy to open her arms up wide and see her smile real big, tell her she’s going to visit Dr. Ray. Every time he walks in to her room, Kennedy demands a hug.

“He always says, ‘No one is ever happy to see me. This is great,’” Jodi said.

Jodi laughs at the time her burly 6-foot, 6-inch, bearded husband picked up “this distinguished” doctor to give him a big hug after Dr. Ray gave the good news that their daughter showed no signs of cancer.

“He’s my best friend,” Wes said. “He doesn’t know it, but he’s my soulmate now.”

Brains

During her surgery, Dr. Iglesias removed the mass that turned out to be a cyst. Inside the cyst was a tiny tumor.

A couple of days after the surgery, a full body scan from brain to pelvis showed no evidence of cancer. But to continue to fight off the threat of the cancer returning, Kennedy began her first of 12 courses of chemotherapy that ended on Aug. 24, 2016.

“We’re fighting the hypothetical,” Wes said.

With the fight underway and the family winning it so far, the Cokes began to explore their daughter’s rare form of cancer. While plenty can be found on leukemia or neuroblastoma, Type II pleuropulmonary blastoma is a mystery to most, including the medical field.

Jodi and Wes say they belong to a Facebook support group with only about 170 people on it.

Kennedy’s chemo was given in accordance with the International Pleuropulmonary Blastoma Treatment Study. Dr. Ray's expertise has prevented the family from traveling to another part of the country for care.

“Most children’s hospitals would never see this type of cancer once and Cook Children’s has seen it seven times,” Jodi said. “They have more experience than most and we trust Dr. Ray so much. It’s a relief for us because we didn’t have to pack up and move to Houston or New York or Memphis. Dr. Ray told us, ‘I wouldn’t hesitate to transfer you, but this is the best place for you all. We all share information, so you don’t have to pack up and move.”

Because of the rarity of Kennedy’s disease, the family was approached to be a part of another important research study, ABTR01B1 from Children’s Oncology Group to learn more about her form of cancer. The study collects and stores samples of tumor tissue, blood and bone marrow from young patients with cancer to study in the laboratory to help the study of cancer in the future. They didn’t hesitate to say yes.

“It’s not necessarily even going to help her,” Wes said. “But there are kids running around right now, wherever, and they’ve got cancer and don’t know it yet. There’s always going to be kids with cancer. If we can provide even a slice of help or even be able to be a part of something that helps some other family’s child have an easier time of it or even possibly get a cure … Who knows? I guess that help is what we have to offer.”

Wes and Jodi can’t believe they’ve gone through this, but they have made it together. They call their tragedy a faith shaker and they admit to being angry at God after the diagnosis. But they have made it, with their faith and their marriage intact.

“It has thankfully brought us really close together as a couple,” Jodi said “Even though we are polar opposite people. We’re very different from each other. We’re the typical opposites-attract couple. We process things much differently. His fears will be very different than my reaction and my fears will be very different than his. We know people whose marriages have ended through pediatric cancer. You can certainly see why.”

“You can grow apart or you can grow closer,” Wes said. “It has brought us together as a family. You love your kid more every day. You can’t believe the depth of love you have for your child when you see her go through this.”

Courage

Kennedy turned 2 years old at Cook Children's. She also celebrated Christmas at the medical center.

"It was all pretty overwhelming, but in a good way," Jodi said. "To be at Cook Children's at Christmas was really special. Kennedy had her first chemo on a couple of days before Christmas. She was just overwhelmed. People brought her gifts and there were so many decorations. She loved it. How decked out it was and there were so many special things going on at Cook Children's that it got us through a very difficult time."

Shortly after Christmas, the Coke family returned home where everything was so different, but yet the same. They still had their same "hilarious, goofy, chatty" little girl. But things were different now, too.

Kennedy plays doctor knowing a bit too much about how stethoscopes and heart monitors work. She's spent so many days at the medical center with really smart people, her parents say she has an incredible vocabulary for a child who is not yet 3 years old.

And, she owns a castle.

When she has an early morning appointment to Cook Children's, she sometimes doesn't wake up in the best of moods. Until she's told it's time to head to her castle and then she's wide awake.

"She used to have long hair. Long enough to be in pig tails. She sat there, eating jellybeans and watching Frozen while we shaved her head," Jodi said. "We were all crying and she couldn't have cared less."

Kennedy's hair is returning. Peach fuzz is underneath her Elsa wig that she wears even to bed on some nights.

"All signs are pointing to good," Wes said. "At first, we were the worst case scenario and now ... And now, we're the best case, worst scenario."

For now, the Coke family has been through the tornado, dropped the house on the wicked witch and returned home.

Even if it's a medical center that saved a little princess' life.

#erasekidcancer

To support kids like Kennedy and the Cook Children’s Hematology and Oncology Center, visit erasekidcancer.org. September is Childhood Cancer Awareness Month. This month, we're pulling back the curtain to share what Cook Children's is doing to fight pediatric cancer. Stories will be shared to reflect the hearts of our caring professionals and volunteers, the brains of our clinicians and researchers and the courage of our patients and families.

After all, he has the attributes that it takes to make one – he’s courageous, brave, has incredible strength and never gives up. He even has his own logo.

And like every superhero he has an amazing origin story.

Micah's parents were students in China when he was 1 year old. His mom, Linda, and dad, Maurice, noticed half of his face was sweaty and the other half was pale white with no sweat at all as if someone drew a line down the center of his face. At first, this happened about once a month, but then it became a daily routine. Soon, it wasn’t just his face any longer, but the left side of his chest, back and whole left arm. 

At a work conference, Linda took Micah to a doctor in Thailand. He was referred to a neurologist in Bangkok where an MRI discovered a massive tumor in his chest and spine.

The family moved back to America where Micah was diagnosed with ganglioneuroblastoma, a life-threatening form of cancer. Since his diagnosis, Micah has faced a heart-wrenching 10 operations and a life of immense pain. He has been on hospice care since June.

On July 7, Micah left for Camp Sanguinity with his siblings, Grace, Nolan and Eden Kate. That evening, Micah had what Linda describes as a “severe pain crisis.” He is currently at Cook Children’s where he is receiving antibiotics and care for an infection around the tumors in his jaw and cheekbone around the eye.

He’s in a lot of pain, as he has been for so much of his young life, but nothing can stop his love for sports, Legos and of course, superheroes. And like any superhero, he continues to fight and motivate.

“You would never want your child to have this disease,” Linda said. “But we are humbled and amazed at the influence of Micah. He has been an inspiration to so many people, including his mom and dad.”

Micah became an inspiration for the TCU baseball team beginning in 2013. Micah and his parents traveled to Omaha, Neb. to cheer on the Horned Frogs at this year’s College World Series.

The Horned Frogs carried constant reminders of Micah with them, wearing his letter M logo on their caps and T-shirts.

“He’s the toughest 7-year-old I’ve ever seen,” TCU catcher Evan Skoug told the Star-Telegram. “They say that God gives his toughest battles to his strongest soldiers. And we’ve seen that’s true with Micah.”

Now Micah faces something far tougher than any supervillain in a comic book and that’s what makes him tougher than any superhero you’ve ever seen. He’s fought against cancer and through it all has inspired people everywhere.

“It’s his personality,” Maurice said of his little boy. “He’s always happy and smiling. He likes to be silly like any child his age. But he also has great strength. We like to say, ‘Never, ever give up.' He’s inspired the TCU baseball team and others to not give up. Micah has been through a lot and he keeps going.”

Micah’s family asks for your prayers for their son and if you would like to help children with neuroblastoma please click here.

Related links:

• The superheroes of Cook Children's Hematology and Oncology Center
• Cook Children's Neuroblastoma Program
• Hematology and Oncology Services at Cook Children's