No one is made for cancer, but Perry Oviedo certainly has the spunk it takes to beat it. At just 3 years old, she’s already spent nearly two years fighting a type of blood cancer called acute lymphoblastic leukemia (ALL), and she’s done it with a heaping dose of grit and grace.

“As soon as she started showing glimpses of a personality as a baby, we thought, ‘Oh, God, we need to buckle up because something is different about this kid,’” said Ashley Oviedo, Perry’s mother. “She’s always had a very large personality. We jokingly call her our feral child because she’s just wild, silly and sassy.”

Acute lymphoblastic leukemia is an aggressive cancer in which the bone marrow makes abnormal white blood cells that crowd out healthy blood cells. Red blood cells carry oxygen throughout the body. Having too few of them results in anemia, which means the body’s tissues and organs do not get the oxygen they need to thrive. Perry’s diagnosis came after about six weeks of symptoms that doctors originally thought were due to a viral infection. Some ALL symptoms, such as fever, fatigue and loss of appetite, overlap with common viral symptoms.

Slowly, Perry’s once vibrant personality faded into fatigue, Ashley says. Her cheeks turned pale, and her big brown eyes were overshadowed with dark circles underneath. Once a good sleeper, Perry began waking multiple times at night.

“At her second birthday party, we noticed that she just wanted to be held,” Ashley said. “You would think, even if she wasn't feeling great, she would still somewhat enjoy her birthday party with all of the fun and cupcakes and friends. I thought something might be wrong because she wasn’t really acting like herself.”

In the weeks that followed, Perry’s tired demeanor gave way to a persistent runny nose and stomachache. Maybe she was cutting her molars, had an ear infection, or was fighting a virus or two that came and went, thought doctors and the Oviedos. But Perry never seemed to fully recover, and Ashley kept pushing for answers. 

One finally came on a Wednesday morning in January 2024, and it changed their lives forever.

Clues Emerge

On the eve of that fateful day, Perry spent the morning with her grandmother, who noticed that Perry didn’t look or act as if she felt well—a concern she expressed to Ashley during a phone call discussing pick-up plans. Her mother’s worry confirmed what Ashley and her husband, Joseph, had witnessed for weeks. Something was wrong with their baby, and it was more than just a virus. 

“It was super validating to hear from someone else who knows her so well that they also thought something was wrong,” Ashley said. “I needed to hear that because I didn't want to be the crazy mom making another appointment and insisting that something is seriously up with her.”

Ashley made a beeline to her mother’s house to pick up Perry. 

“When I got there, my mom opened the door and Perry was standing next to her, and I'm not kidding when I say Perry was unrecognizable to me,” Ashley said. “She looked almost jaundice-like and had little bruises on her face.”

Ashley made an appointment with Perry’s pediatrician for the following morning. It was the first time since the onset of Perry’s symptoms that her long-time pediatrician examined her, having been out of the office when Ashley initially took Perry to get checked out weeks before. The doctor immediately noticed the difference between the spirited Perry she was accustomed to seeing and the Perry in her office that day.

By that afternoon, results from bloodwork performed at the pediatrician’s office were in, and revealed troubling abnormalities. Too soon to suggest a diagnosis, the pediatrician’s office called and instructed the Oviedos to take Perry to the Emergency Department at Cook Children’s Medical Center for further testing.

Taken By Surprise

Ashley and Joseph were more relieved at having a potential clue to Perry’s health issues than they were alarmed, never imagining the diagnosis that was to come. At this point, no one had mentioned cancer, or anything close to it.

“I was so naive to the fact that cancer was even a possibility,” Ashley said. “I will never forget, when we were pulling up to Cook Children's to park that day, there was a dad pushing a little boy who obviously had cancer in an umbrella stroller right through the courtyard in front of Peaks the Dragon. And I thought to myself, ‘Oh my God, can you imagine?’”

But in the ER, there seemed to be an elephant in the room. No one wanted to deliver the bad news.  

After several questions from the Oviedos, the ER doctor reluctantly shared a likely diagnosis, beginning with the best-case scenario.

“The cure rates for ALL are very high,” the doctor said.

“What is ALL?” Ashley asked.

“Leukemia,” he replied.

“Before I start overreacting, are you telling me we are here because you think my baby has cancer?” Ashley pressed. 

With a sympathetic nod of his head, the doctor confirmed the diagnosis. The news knocked the breath from Ashley’s lungs.

“In that moment, our world just completely stopped,” Ashley said. “The nurse and the doctor were standing there clearly devastated and heartbroken to be delivering the news to us, but I forced it out of them. In hindsight, they weren't planning to be the ones to tell us.”

Rapid Response

Behind the scenes, Perry’s blood was being carefully studied under a microscope, and a care team was already forming a treatment plan. Two of those team members, Holly Pacenta, M.D., Cook Children’s hematologist/oncologist, and Alan Ready, CPNP-AC, a hematology/oncology nurse practitioner, met the Oviedos in the ER to explain the diagnosis and outline the steps ahead, which included two and a half years of chemotherapy. By that evening, Perry was settling into what would become her home away from home during much of her treatment—Cook Children’s Hematology and Oncology Unit. Within 24 hours, she began her first round of chemotherapy.

“The first 48 hours were a whirlwind,” Ashley said. “I was so grateful that they were able to intervene so quickly at the time. It was unbearable to sit there and hear that your child has cancer, but the rate at which we were diagnosed and started treatment, the efficiency and urgency, it's just unmatched care. We're just so fortunate to be where we are and have the team that we do.”

Perry’s Personality Returns

The 30 days of steroids that Perry received during her initial phase of treatment proved the hardest part for the toddler. Swelling made her uncomfortable and unable to walk, and she wanted to eat constantly—both common side effects of steroids. When Perry requested mac and cheese at 3 a.m., the Oviedos obliged, knowing the small act brought a little comfort and relief to their baby.

As treatment progressed, the Oviedos began to see glimpses of their daughter’s spunky personality return. Her care team noticed, too.

“She is such a sweet little girl with a lot of spunk,” said Dr. Pacenta, Perry’s hematologist/oncologist. “Whenever she comes to clinic, she usually ends up in the workroom where the doctors and nurses sit, entertaining us or showing off her outfit. She is always happy to see us and full of joy, even when she knows she’s coming to her doctor visit to get chemo. It reminds me that she’s still just a little toddler who just wants to play and laugh.”

Now in the final stage of treatment, known as maintenance, Perry takes oral chemotherapy at home.

“She has taken ownership of her own treatment,” Ashley said. “I fill the syringes and she does her meds herself and rinses them out. I can’t believe how big of a girl she has become through all of this. It's just wild to see how she’s adapted to it all.”

In April, following her final dose of chemotherapy, Perry will do what all cancer patients and their families dream of doing. She’ll ring the bell on the Hematology/Oncology Unit to signal and celebrate her completion of cancer treatment.

“We were really fortunate that Perry responded really quickly to treatment and that she checked all the boxes to be considered the most favorable category for the lowest risk of relapse for her type of cancer, which is a miracle,” Ashley said.

Play is Medicine

Medical interventions like chemotherapy may heal the body, but the interruption of childhood can wreck the mind and spirit. Cancer treatment is traumatic, especially for very young children like Perry. They often lack the emotional skills to process and articulate their feelings. Kids battling cancer may also miss out on important developmental and social milestones like play dates with friends or attending pre-school.

That’s why healing supports like play therapy are as important as chemotherapy. Play is a language all kids understand, whether they’re speaking full sentences or have yet to form their first words. It helps them feel like a kid again while walking through a deeply serious and complicated circumstance, and provides an outlet for expressing their feelings and practicing social skills.

“Whether you’re a toddler, or an 83-year-old with profound life experience, play is universal,” said Leah Webb, LPC, Cook Children’s Hematology/Oncology clinical therapist. “Play therapy creates a sacred space for children to be empowered in a world that can feel scary and complex, especially if they are navigating medical treatments that accompany diagnoses such as ALL. During a play therapy session, the clinician has the honor of walking alongside a child as they express their deepest thoughts and emotions via tools such as toys, art or a sand tray. Through play therapy, you get a glimpse of a child’s inner world, and the healing that takes place in this process is truly a beautiful thing to watch unfold.”

Play therapy isn’t just healing Perry’s mind and spirit during treatment, it’s also preparing her for the life that comes after.

“She's just been subjected to so much at such a young age, and she doesn’t know how to articulate that,” Ashley said. “I’m so thankful Dr. Pacenta referred her to play therapy. They're really caring for her as a whole person and supporting all of her needs because they want her to ring her bell and finish treatment and be a normal, healthy, happy and thriving kid in kindergarten. It's just meant a lot to me as a mom that they care about her.”

Even with Perry’s favorable response to treatment, her journey hasn’t been without its complications and setbacks, Ashley says. What they once called spunk and sass, they now recognize as the spirit of the warrior Perry has proven herself to be. Their eyes remain firmly fixed on the prize ahead—that ever symbolic and special bell-ringing day.

“It still feels surreal sometimes, but at the same time, we've been at this for so long now that I literally forget what life was like before we were the cancer family and Perry was the cancer kid,” Ashley said. “It's a rollercoaster of emotions of grief and joy that we've been able to experience even on the hardest days. And to see Perry's resilience, it's just totally changed our family. Turns out, she’s a real warrior.”

It was May 7, 2024 when Natalie and Carlos Bendana Sr. learned their son, Carlos, had leukemia. He was just 3 years old and had been feeling sick off and on for a few months.

Leukemia Diagnosis

With navigating Carlos’ regular treatment, caring for two other children and working full-time jobs, Natalie and Carlos Sr.’s lives were turned upside down.

“It’s been an emotional rollercoaster,” Natalie said.

Their local family support system had also tragically passed away just two months before Carlos’ diagnosis with pre-B Acute Lymphoblastic Leukemia or pre-B ALL.

Leukemia is the most common type of childhood cancer and can be a result of genetic risk factors although the exact cause is often unknown. In acute lymphoblastic leukemia (ALL), the leukemia usually starts from the lymphoid cells in the bone marrow.

Leukemia Care with Cook Children’s

Carlos has received leukemia care with Cook Children’s Prosper from the start. Soon after Natalie had taken him back to the hospital for more testing, Lauren Akers, D.O., hematologist at Cook Children’s Hematology and Oncology Prosper, told her that Carlos had leukemia.

“The directness and honesty from Dr. Akers helped me prepare,” Natalie said. “I felt a mix of emotions the day she diagnosed Carlitos with leukemia.”

Natalie felt like she could process it better when Dr. Akers determined that it was type B leukemia.

“Pre-B ALL is a curable form of leukemia,” Dr. Akers said. “There are ups and downs throughout treatment. Our goal is to support kids and ensure they stay as healthy as possible through treatment. Carlos has a very good chance of being cured.”

When Dr. Akers explained how the first 10 months would be the hardest, Natalie and Carlos Sr. were so grateful for Carlos’ care with Cook Children’s. He had surgery, a blood transfusion and started chemotherapy right away.

“All the hospital staff have been amazing! Everyone even knows Carlitos’ name,” Natalie said. “He has four nurses and they laugh together and walk around with him. They always go above and beyond to make him feel comfortable and that he’s able to trust them.”

Carlos is being treated close to home at the Cook Children’s Infusion Center in Prosper. The specialist team does everything they can to make it comfortable for kids.

“They even call the infusion center the playroom!” Dr. Akers said. "Carlos is a sweet little boy and has become much more talkative.”

Carlos turned 4 years old in February and will have to go through treatment for 2.5 years, currently scheduled to end on Sept. 2, 2026. Natalie feels hopeful, but scared with still having a long way to go.

“Luckily, we caught Carlitos’ stage of leukemia at a time where he didn't need a bone marrow transplant and it’s not hereditary,” Natalie said. “We hold onto hope knowing that treatment and medication can help decrease chances of any form of leukemia returning.”

Enduring Challenges

Natalie and her family do everything they can to keep Carlos from getting a fever so they don’t have to bring him to the hospital. Like millions of people sheltered during the COVID-19 pandemic, they’ve had to keep Carlos living in lockdown.

Carlos is currently in a stage of being at a higher risk for infection and if he has a fever and his white blood cell count is low then he would need to be admitted. Once Carlos gets into the treatment level known as “maintenance” it will be easier. 

“The most important thing is to just treat them like normal kids,” Dr. Akers said. “It’s a long road, but our goal is to provide care throughout treatment and encourage the parent to treat their child like normal as much as possible.”

Finding Comfort

Natalie makes an effort to take things one day at a time. She also keeps her sanity by refraining from doing too much research about leukemia online.

“I checked Facebook and was overwhelmed with other people’s lives,” Natalie said. “I started thinking ahead of myself and that wasn’t what my son was going through. My husband says, ‘Live the day,’ and some days are better than others.”

She makes sure to stay focused on Carlos’ care and what Dr. Akers advises. Carlos Sr.’s uncle and his wife also help them whenever they can.

“I can’t think ahead and you have to have a lot of faith to get through this because it isn’t easy,” Natalie said. “Anyone going through this needs a support system.”

Often, parents blame themselves when their child gets sick. Dr. Akers finds this to be one of the most common ways she gives parents advice.

“Most of the time we don’t know why leukemia happens, but luckily we have excellent treatment options available and most children with ALL are able to be cured,” Dr. Akers said. “It’s also important for parents to take care of themselves and make time for themselves, in order for them to be able to give the best care and support to their child. I think it’s essential to make sure parents understand that it isn’t their fault.”

Three-year-old Rylee McLemore and his dad Steven do everything together. Fishing, driving in the Jeep and exploring outdoors are just a few of their favorite pastimes.

“Rylee is a daddy’s boy,” Steven said. “He is my best friend and I’m his anchor.”

Everything changed in October 2021 when Rylee began experiencing fever, fatigue, bruising and a lack of appetite. The family was living in California where doctors assured them it was a viral infection. But two days before his second birthday, Rylee’s mom Amber took him to the Emergency Department because he had stopped walking. Bloodwork revealed acute lymphoblastic leukemia. Rylee’s bubbly personality and constant laughter instantly disappeared as he was in pain.

“It was like all the life in him was gone,” Steven said. “He just wasn’t the same child and hurt all the time.”

Rylee’s parents were determined to find the best hospital to treat him. The oncologist who diagnosed him in California referred him to Cook Children’s and on Rylee’s second birthday, the family flew to Fort Worth.

A couple of weeks after diagnosis, Rylee’s hair started falling out and he would need his first haircut. Steven was working out of state at the time, but this was a milestone he was not going to miss.

“I got there as soon as I could,” Steven said. “Rylee had pretty red hair and I didn’t want him to be scared with everything going on. I decided to get a haircut with him.”

The father-son duo got haircuts together in Rylee’s inpatient room on the Oncology floor – a moment Steven will always remember. The haircuts are just one example of the many ways they have felt supported at the hospital every step of the way.

“We love it at Cook Children’s,” Amber said. “The doctors and nurses are absolutely amazing. I wouldn’t choose any other place.”

Within four weeks of treatment, Rylee went into remission. He is now back to his spunky self and set to finish the 2 ½ year treatment protocol in February. Amber says she had always worried about her husband and son having a close relationship because Steven worked on the road for the first 10 months of Rylee’s life and only saw him once a month.

“It’s amazing to see how close they are,” Amber said. “Rylee always wants to be with his daddy. They really are best friends.”

In April, patient Kaydence Mixon who was diagnosed with leukemia rang the end-of-treatment bell at Cook Children’s Medical Center surrounded by her family, friends and care team.

Following a heartfelt speech from Kaydence’s dad, Justin Mixon, a big dance party featuring a disco ball and pompoms broke out.

After nine months of treatment at Cook Children’s, the precious 2-year-old has proved she’s strong. But Kaydence’s superpower lies in the joy she spreads as she quickly crawls around the floor or busts a move to some music, all while waving to friends and passersby.

Besides showing what it means to be brave and resilient, “she shares happiness and joy without saying a word, which has taught us that anyone can be kind and help others without even saying anything,”  Justin said.

Surprising Diagnosis

On July 26, 2022, Kaydence came to Cook Children’s for some blood tests in preparation for a heart procedure. The next day, she underwent successful surgery to close an atrial septal defect (ASD), or a hole in her heart between the upper chambers. 

Later that day, Kaydence and her family received her leukemia diagnosis. She began chemotherapy treatment two days later.

“It was a rough three or four days, but we worked to understand the ‘whys,’” Justin said. “We’re faithful people and found purpose in it all pretty quickly.”

“God graced us with a child who could handle treatment so well,” he said. “She has done it with a smile on her face, so we’ve been able to do it with a smile on our faces. That joy has been reciprocated by the staff too!”

Source of Sunshine

Kaydence became quite a celebrity during her time at Cook Children’s. She became friends with other patients on her floor in the medical center and built strong relationships with each member of her care team.

To Kaydence, no one at Cook Children’s was a stranger.

“She’s been the source of sunshine for all of us the entire time that she’s been here,” said nurse practitioner Alan Ready. “Even if they’ve never been involved in her care, staff all over the hospital know who she is. It’s a testament to her and her family.”

When asked about his family’s experience, Justin says he and his wife Natasha Mixon are grateful for the employees who made Kaydence’s experience at the hospital more normal and enjoyable.

“Good things can come from bad situations,” he said. “There are blessings along the way if you’re looking for them!”

It’s hard to imagine how a stroke could be a blessing in disguise, but Joseph and Allison Turner believe it was for their son, Owen, when he was just 8 months old.

“The stroke caused all kinds of battles that we’re still battling today, eight years later, but it saved his life,” Turner said.

When Joseph noticed Owen wasn’t moving the right side of his body while playing with his baby on a Sunday morning in January 2014, he and Allison knew something was terribly wrong. In addition to the loss of movement, their otherwise happy and content baby was fussy and irritable. He was suddenly behaving differently than he had been just a few days earlier when Allison took Owen to his pediatrician to check out a few bumps that appeared on the top of his head. Initially thought to be cysts, the doctor scheduled Owen for a return visit the following Monday to have them rechecked. But the changes they saw in Owen that Sunday morning led them to rush to the nearest emergency room in Cleburne, Texas, just one day before their scheduled follow-up appointment with Owen’s pediatrician.

Things moved quickly at the ER. It was apparent to doctors there that Owen’s condition warranted a more specialized level of pediatric care than could be given at their hometown hospital, so doctors called a helicopter ambulance to transport Owen to Cook Children’s Medical Center. Joseph wanted to be at Cook Children’s as soon as the helicopter landed with his son, so he jumped in his truck to make the 30-minute drive to Fort Worth. Allison stayed behind with Owen to travel in the helicopter with him.

As they were waiting for the air transport doctors were simultaneously running a number of tests to try and determine the cause of his stroke and interrupt further damage as quickly as possible. A diagnosis came quickly, and it was beyond belief for Allison—acute myeloid leukemia (AML), a fast-growing blood cancer that worsens quickly if not treated.

“Absolutely not,” Allison said describing her initial reaction. “There must be something else. It can’t be. This is my perfectly healthy baby.”

But Owen was critically ill. Abnormal leukemia cells were quickly building up in his blood and crowding out normal cells, which Allison says thickened his blood and led to the stroke. The bumps that appeared days before turned out to be clusters of leukemia cells sitting on top of his head. Had the stroke not prompted the Turners to take Owen to the ER, doctors told the family he may not have lived to make it to his scheduled doctor’s appointment the next day.

Allison rode with Owen in the helicopter to Cook Children’s in shock. Their lives had just changed forever, but there was no time to dwell on their disbelief. At Cook Children’s, Owen was immediately admitted to the pediatric intensive care unit (PICU) and met by Kenneth Heym, M.D., a pediatric oncologist and medical director of Cook Children’s oncology program. Dr. Heym wasted no time treating Owen’s cancer. That very Sunday night, the Turner’s baby boy began his first round of chemotherapy.

For the next four months, Cook Children’s was the family’s home while Owen underwent chemotherapy treatment. They left twice, but only to stay a few days just down the road from the hospital at Ronald McDonald House Fort Worth. After completing the intense AML treatment protocol, Owen was discharged from Cook Children’s in May 2014 and returned home for the first time in months.

In a matter of days, Allison and Joseph went from knowing little to nothing about AML to becoming experts on the topic. They credit their relationships with other cancer families at Cook Children’s for learning the ropes. Allison recalls that Cook Children’s chaplains would often stop by for a visit with Owen, and she would sometimes take that opportunity to step out and visit with other moms on the unit.

“Talk to the other cancer families if you're on the cancer floor,” Allison said about the advice she gives to families facing a new cancer diagnosis. “Those people were our family. We still send Christmas cards every year to the families that were inpatient while we were inpatient. They were such a support system. They share in something that nobody else on the outside would ever understand. Meet, find and talk to other cancer moms and cancer families that are going through the same thing.”

Today, 9-year-old Owen is cancer free and loving life, despite having a few lingering issues as a result of the stroke, like weakness on the right side of his body for which he continues weekly therapy. The stroke also led to daily seizures. In 2018, Owen became the first patient at Cook Children’s to undergo a trailblazing endoscopic surgery that disconnects part of his brain to stop seizures.

Even with these challenges, Allison says her son is a happy, easy-going kid looking forward to a future full of possibilities. If Owen has anything to do with it, that future will include lots of golfing and fishing, scoring a few goals for his soccer team, and cheering on Dude Perfect as they attempt their epic stunts.

About AML

Acute myeloid leukemia (AML) is a fast-growing blood cancer that originates in the bone marrow where blood cells are made. It starts with the abnormal growth of cells that form white blood cells, red blood cells or platelets. The abnormal cells end up crowding out normal blood cells, which can lead to infection, anemia and a tendency to bleed easily.

Of the more than 10,000 children diagnosed with cancer each year, nearly one in three cases are a form of leukemia. There are two main types of acute leukemia, with AML being the least common one in children.

Symptoms may be hard to spot. In Owen Turner's case, his symptoms began with bumps on the top of his head and escalated quickly resulting in a stroke. 

Other symptoms may include:

●     Easily tires, is weak or dizzy

●     Pale or ashen skin

●     Shortness of breath, trouble breathing or an unexplained cough

●     A fever or infection that doesn't get better

●     Bleeds or bruises easily, the gums may bleed often when brushing the teeth, recurrent nosebleeds

●     Continual bone or joint pain

●     A swollen belly

●     Swollen lymph nodes on the sides of the neck, underarms or groin area

●     Headaches, seizures, vomiting

●    Non-itchy rashes caused by bleeding under the skin

Acute myeloid leukemia is aggressive. It can move into other parts of the body and, if left untreated, can lead to death within six months or less.

If your child experiences any of the above symptoms, it is wise to talk with your pediatrician about them.

The latest set of eyes to see it? Ellen DeGeneres! The uber-famous comedian and talk show host interviewed the Yielding family about their journey with “keulemia” and surprised them with a special gift during the holiday season.

You can view their interview here.

Due to current COVID-19 restrictions, only one parent or caregiver can attend appointments with patients. So each Tuesday, Aiden and his mother, Lori, attend appointments at Cook Children's where he receives chemotherapy. During his treatments, Aiden's father, Chuck, waits patiently outside of the building until Aiden is taken into a room with a window.

Once Aiden can see outside, Chuck hosts a one-man, music-free dance party for Aiden (and anyone else who happens to see him). The two are usually on the phone, talking to each other at the time. Aiden will call out dance moves for Chuck to do, and he even does a little dancing himself. Chuck says he does it to lift Aiden's spirits.

"The restrictions during the pandemic made me feel helpless. And the only way I knew to cope was to somehow be there during his treatments," said Chuck. "When he was able to come to the window, it just came natural to me to wave and carry on, which turned into me dancing!  I love knowing that it makes him giggle and smile, and let’s him know that his struggle is my struggle. I would never want him to think that he is going through this without his dad."

"I think it’s tough to break up a close knit family of four in these days, only allowing one parent to be present during Aiden’s clinic treatments and equally hard to not have his big brother Camden by his side too!" said Lori. "The population of kids present are all immunocompromised, so it makes sense, just a tough pill to swallow! I absolutely love listening to his giggles & watching him belly laugh at Chuck’s fancy dance moves. He can be having a terrible day, which transfers towards us some times too, and it’s instantly better once he sees his dad shake his booty. Aiden’s smile is contagious and can light up a room, even behind his mask."

The Yielding family is hosting a blood drive on Saturday, Oct. 3 in Fort Worth, Texas. Click here to sign up.

“His pediatrician said he didn’t look good, and she recommended we drive to the emergency room at the downtown location,” Isabel said. “Something wasn’t right with this blood work.”

Isabel, Ignacio and Matt arrived at Cook Children’s on Feb. 13, 2020. After more testing, Matt was admitted to the oncology unit. The on-call physician gave the family the devastating diagnosis of leukemia.

“She said he had probably been in some bone pain for a while, and we just didn’t know. She went on to tell us that Matt most likely had leukemia, but we didn’t know what kind yet,” Isabel said. “He had a bone marrow biopsy the next morning, and we found out which type he had. It all happened so fast.”

Matt received the formal diagnosis of acute lymphoblastic leukemia (ALL) on Feb. 14, five days after his fourth birthday.

“I remember we spent Valentine’s Day in the hospital cafeteria together after Matt was confirmed to have ALL and had his port placed. None of this really sank in until much later,” Ignacio said. “I still remember asking his doctor, ‘Are you sure? Are you sure this is what it is?’, and they were more than sure.”

Matt’s diagnosis already came with uncertainty and a heightened awareness for his health, but COVID-19 only heightened his parents’ worries and created more isolation.

“It’s been terrifying to go through this at all, because his ability to fight any kind of infection is depleted and his immune system is so vulnerable,” Ignacio said. “Now you have this virus that limits everyone from being out and you’re scared that you might come into contact with someone who has it, then you give Matt a hug and now he may have it too.”

Quarantine takes on a new meaning for oncology patients and their families. COVID-19 has forced parents to make difficult decisions for the safety of their families, including isolation from other patient families.

“A lot of other families that we’ve talked to who are also going through this diagnosis say they are use to the isolation, but when you add the extent of the COVID isolation to this it becomes very difficult to handle,” Ignacio said. “Things don’t seem to get any easier through this pandemic. It’s just a matter of waiting for this to pass.”

A sense of unpredictability is anticipated with a cancer diagnosis, but Ignacio and Isabel hoped for a community within the oncology floor. While they do have that with the nurses, child life specialists and staff members, they yearn for relationships with other parents who have similar experiences.

“We expected to have that camaraderie with other parents on the unit, but COVID has just made it to where we can only get that connection through social media or Zoom,” Ignacio said. “You just don’t have that right now. Matt got this diagnosis at the worst possible time with COVID.”

While many have adjusted to their new normal during the pandemic, Matt’s treatment regimen has prolonged the adjustment as he is on week 14 of 120 at the time of this article.

“Everything that we do now is trying to find that sense of normalcy for our family,” Ignacio said. “Financially finding that balance, scheduling appointments for Matt and making sure our other kids still have a life outside of Matt’s cancer diagnosis. We can’t just stop living.”

Cancer amidst COVID-19 has given the Rodriguezes a renewed outlook on placing importance on their family. Although they may feel isolated from their community, the time they spend together as a family is now more valuable than ever.

“We enjoy every moment we have with our kids. I hate COVID, but I’m thankful that I’ve been able to have them all home with me,” Isabel said. “We realize every moment that Matt is okay is important, and we’re amazed at everything he’s still able to do. We treasure those moments more than before.”

Their journeys differ in many ways. Emily is a two-time cancer survivor who says she essentially ‘grew up’ at Cook Children’s, while Jason was diagnosed as a young adult. But both say they were so inspired by their experiences at Cook Children’s, they decided to return to care for patients and families who resemble their own stories.

For Jason, becoming a nurse was not even on his radar. At 20 years old, he was studying to become an opera singer at Oklahoma City University. At first, he thought the shoulder pain he was experiencing was the result of a boxing class he was in. Then the pain moved to his hips. After several visits to different doctors, Jason finally had bloodwork done.

“They discovered that my white blood cell count was crazy high,” he said. “They’re supposed to be about 6,000 and I think mine was 68,000 at the time of diagnosis.”

He was advised to go to Cook Children’s to see Karen Albritton, M.D., who specializes in teenage and young adult cancer. Luckily, Jason was already familiar with Cook Children’s since he grew up in Fort Worth.

“Finding out that the best place you can go is in your hometown was just serendipitous,” he said.

It was at Cook Children’s that Jason received the diagnosis of biphenotypic leukemia, a mixture of both acute myeloid leukemia (AML) and acute lymphoblastic leukemia (ALL). He spent a total of three months receiving chemotherapy and radiation for his cancer. During that time, genetic testing revealed he was highly likely to relapse if he didn’t receive a bone marrow transplant. In another twist of fate, he learned his only brother was a perfect match. Thanks to his sibling’s willingness to become a donor, Jason received the bone marrow transplant that would ultimately make him cancer-free on May 8, 2012.

“I ended up having my transplant on my 21^st birthday,” said Jason. “It's something I always joke about because whatever day you get your transplant is supposed to be celebrated as your second birthday, but I still only get one.”

To make his 21^st birthday even sweeter, Dr. Albritton arranged for three singers from the Fort Worth Opera to come visit him in the hospital.

“She really went above and beyond, and really, it was a very, very special day,” he said.

With the intense treatments Jason had to endure to fight the cancer, he wasn’t sure he’d ever be able to sing again. It had been a dream of his to become a professional performer since early childhood, but he feared his vocal chords had been permanently affected by the medication. But after beating cancer, Jason went on to finish his degree and even received a master’s degree in opera at the San Francisco Conservatory of Music.

“While I was doing all of that, it just felt like something was missing. I had thought about becoming a nurse when I was in the hospital,” Jason explained. “So I went back to my other love and honestly, I've never been happier than I am right now as a nurse. And especially at Cook Children’s, being able to work at the hospital with some of the people who treated me, and being there for these kids the way the nurses were there for me. I've gone home crying happy tears multiple days because I just feel so lucky.”

He says he loved his doctors, but the nurses held a special place in his heart.

“The nurses are the ones who are with the patients most of the time, and it was the nurses who really took care of me when I was at my sickest,” said Jason, his voice cracking as he spoke. “When I was in the most pain, when I couldn't stand or sit, they made my treatments bearable. I actually got to tell one of them that she specifically was the reason I wanted to become a nurse, because of all the ways that she helped me when I was a patient.”

Much like Jason, Emily says the nurses left a big impact on her, though she was much younger when she was diagnosed.

“I spent the majority of my childhood fighting cancer at Cook Children's,” said Emily. “In November of 2001, when I was almost 4 years old, I was diagnosed with Wilms' tumor. I had my kidney removed with my tumor. That was the size of a youth football.”

For Emily, the treatments lasted many years. She relapsed twice and had to have additional surgeries on her lungs and diaphragm, all followed by chemotherapy and radiation.

“Cook Children's quickly became my second home and somewhere that I felt safe,” she said. “I thought this was normal. Cook Children's made it feel fun, like something that I didn't have to do, but it was just part of life.”

She has especially fond memories of the Hematology/Oncology infusion center where she would receive treatments as an outpatient.

“The clinic was like a sanctuary for me. It was somewhere that I felt safe and where there was other kids like me who were bald and had ports and IV poles. That's where I would make most of my friends,” said Emily. “The clinic nurses always were a blast, playing music and giving out prizes. And Child Life made sure that even though we were there for hours, that it was always fun.”

In 2004, Emily received an autologous stem cell transplant and was deemed cancer free. She was on the mend until middle school when she developed a second cancer in her thyroid, likely due to heavy treatments from her first cancer. She had her thyroid removed and she was once again cancer free. She says even then, she knew she wanted to take care of children. When Emily went to college, she considered going to medical school to become a doctor, but quickly realized nursing was her calling.

“I love interacting with people. I love having relationships with people. I love being very hands on,” she said. “I felt like a doctor does all of those things wonderfully, but I felt like as a nurse, I could do all of those things more prevalently.”

She applied to Cook Children’s nurse residency program, but knew the competition would be strong. Out around 600 applicants, only about 5% would be accepted into the 12-month program.

“I knew that working at Cook Children's was a privilege and an honor, and I just had to tell myself that it may not happen right away, but I'll get there someday,” Emily said. “When I got the phone call from the manager of the nurse residency program, I think I cried as soon as she told me who she was. I didn't know if it was going to be a yes or no, but I still cried. As soon as she gave me the offer, I accepted it right on the spot. I think I said yes a hundred times. My mom was in the car with me and we both bawled after I hung up because it just came full circle.”

Both Emily and Jason say they want to work on the Hematology/Oncology floor where they were patients, but also understand the need to keep an open mind since placements for nurses at Cook Children’s are never guaranteed. After rotating through several departments for six months, Emily recently received her permanent placement. She’s officially a nurse in Hematology/Oncology.

“That kind of sealed the deal and it all made sense to me. The plan that God has for my life… all that I went through wasn't just something to go through. It had meaning,” Emily explained. “I always say that I wouldn't go back and change it, because it's allowed me so many opportunities to help other people and, now, children like me.”

Jason, who just began the program in July, is currently rotating through the Hematology/Oncology (H/O) floor. He hopes at the end of his six month rotation, he’ll be joining Emily.

“It's a very special population,” said Jason. “And the nurses just all care so much. I mean the whole staff, everyone cares so much about these kids and just work so hard for them and work so well together because of that common passion. And it's just really special to be here.”

In a recent essay published on NBC News’ website, Leah explained how face masks and forced social distance once marked her as 'cancer girl.'

“I spent a year of my life in rooms with filtered air, marked by rare trips to the outside world; even a decade later, a warm hug triggers a lingering anxiety in me,” she wrote in the essay. “That experience informs how I practice social distancing today.”

Leah was a 15-year-old athlete in her hometown of Aledo, Texas when she was diagnosed with Acute Myeloid Leukemia (AML). What followed included months of intense chemotherapy and a lot of time isolated on the hematology/oncology unit at Cook Children’s in Fort Worth.

“At the time, I was super angry because I mean, I've been through so much. I lost my dad to leukemia when I was 4 years old,” Leah explained over the phone from her home in Chicago. “I basically had the identical cancer to my father's. Now I’m starting chemotherapy, my hair’s falling out and this is high school, when you’re supposed to be having fun.”

Leah vividly remembers the day she got the news. She had just been rushed to the emergency department (ED) at Cook Children’s following an appointment with her pediatrician. Some unusual symptoms, such as fatigue and extreme bruising, led her doctor to run a blood test. He found her white blood cell counts to be exceptionally high.

In the ED, the attending physician told her “I have no doubt in my mind that you can make it through this, but this is going to be a battle.” Those words stuck with Leah for the next several months as she endured grueling treatments. She couldn’t leave her room without wearing a mask and visitors had to keep a safe distance from her. No touching was allowed.

It was tough, but after her last round of chemotherapy Leah was enrolled for a natural killer cell transplant. It was a clinical trial through St. Jude and it worked. She’s been cancer free ever since.

While being a cancer patient consumed nearly a year of her life, Leah didn’t let it slow her down.

“I didn't want to be held back. I wanted to graduate in my class and ultimately did,” she said.

She went on to attend the University of Texas as an undergrad and became a sports reporter. Today, she is pursuing a Master's of Science in journalism at the Medill School of Journalism at Northwestern University. She says she’s had a lot of time to process what she went through and has learned some things that are helping her get through the current pandemic.

“When I was in the hospital, I scheduled things around watching ‘That 70’s Show’ on TV, reading and doing schoolwork. I needed to keep myself occupied,” Leah said. “I'm basically doing the exact same thing now, just with less restrictions.”

And she says it is much easier to wear a mask now, then it was back then.

“We're in this moment where everybody's wearing a mask and they're cool and stylish, whereas mine were those paper Cook Children's disposable masks,” Leah explained. “There's a difference between wearing a mask when no one else is wearing one, and wearing one when everyone around you is wearing one. It’s a lot easier now.”

Leah hopes sharing her personal story will help others realize there are many out there who have been forced to wear a mask and social distance to protect their own health. And she says it’s something we should all do now in a sort of ‘golden rule’ kind of way.

“I've done it for my own protection. Now, I'm doing it for my own protection and for other people's protection.”

Her advice to all of us, including those fighting cancer now, is to take the precautions advised by doctors and scientists and to be patient.

“Just take everything day by day and see every day what you can do to lift your morale and make you happy,” she said. “If it's watching TV, learning a new craft or doodling in a journal, I don't care what it is, but try to find something that does occupy yourself and makes you happy.”

Gabriel was diagnosed with Acute myeloid leukemia (AML) and admitted to Cook Children's in November. Over the past six months, he has spent Thanksgiving, Christmas, New Year's and his birthday in the hospital. Now that he's accomplished his goal of walking an ULTRA marathon, Gabriel has set his sights on going home, which could happen at the end of the month. 

Miles in Motion is an incentivized walking program at Cook Children's, which rewards patients with gift cards for miles walked during treatment. The program is part of a larger initiative called Exercise is Medicine, which encourages patients throughout the hospital to stay active. 

Lauren, who was diagnosed with leukemia in 2017, said Poehler was funny, encouraging and relatable. For about 40 minutes, the two talked about their families, favorite TikTok videos and staying at home during quarantine.

Since being diagnosed with cancer, avoiding germs and public places has become a part of life for Lauren. Poehler asked the teen if she had any advice for those of us who are struggling with the new changes in the world.

“You find the things that calm you down and relax you,” explained Lauren. “Spend time with your family, that’s what I do and it’s got me through some bad times.”

The teen also told Poehler about her dreams of becoming an anesthesiologist, which she attributes to her experience as a surgery patient at Cook Children’s.

“Medicine is so cool,” Poehler told Lauren during the chat. “I’ve talked to a lot of kids who have to go through a lot of procedures and they get interested in medicine because they have experience with it that a lot of young people don't, and they see how they could make a difference. It's really cool.”

Lauren asked Poehler questions about everything from her career path to what it’s like being an actress and comedian. She also asked Poehler what inspires her. Her answer: working mothers.

“Moms who have to work and raise kids, especially during these times. There’s a lot of mothers who are working hard,” Poehler said. “I’m also very inspired by health care workers who are in the trenches and can’t see their own families because they have to be safe. I’m very inspired by people who put their lives on the line, risk their lives for people.”

Last month, Children’s Miracle Network Hospitals named Poehler a CHANGEMAKER, which is an exclusive list of celebrities, influencers, corporate leaders and advocates who have positively impacted children’s health. According to the organization, the individuals and groups named have made a difference in the health and well-being of children, specifically sick and injured children treated at children’s hospitals across North America. 

 "Hutson turned 3 and started having several unsettling symptoms all together that I didn't feel were right," Hutson's mother Heather Liles said. "We asked for a blood test up front, and our [primary] doctor never ordered one. We were told his leg pain was just growing pains, bruises were just bruises and that his swollen face was just because of allergies."

Heather pushed for more answers because she knew something wasn't right. Hutson was finally sent for a blood test.

"His swollen lymph nodes were 'fine,'" Heather said. "But something in my heart told something was wrong."

With his mother's intuition guiding his way, Hutson's diagnosis was confirmed, along with his parents' worst suspicions.

"After generic blood tests ordered by his doctor, we came to Cook Children's to have new blood work done and received the diagnosis that same day," Hutson's father Bo Liles said.

Hutson is diagnosed with B-Lymphoblastic Leukemia, and although his life is centered around treatments, his parents still make time for him to still be a kid.

"Being in treatment is a new routine, one that is based around medicine and keeping ourselves and our surroundings ordered and germ free," Bo said. "But mostly, we want him to be a three year-old boy; to play with his hot wheels and dinosaurs, to eat French fries on car rides and ice cream cones. We stay focused on treatment because he deserves a great summer as he beats cancer."

Hutson has found a love for his hat collection throughout his battle with cancer, and his parents love that he has a piece of his life he can choose and control.

"Hutson has a lot of hats," Bo said. "He loves picking his own hats out, which we know will serve us well at various stages of treatment."

Despite spending so much time at Cook Children's during treatment, the Liles family has found comfort in their nurses and doctors.

"We have been absolutely blessed to have the Cook Children's community to surround us and guide us through this treatment as a family from day one," Bo said. "Grateful is just the beginning of how we feel, from our amazing doctor, Dr. Lauren Akers, to Hutson's favorite nurse, Allie Barnes, every step from in-patient to his clinic visits are full of patience, positive vibes and thoroughness!"

- Story written by Ashely Parrott

With unconditional love comes vulnerability and parents have an overwhelming instinct to protect their children from harm. But it’s an impossible task. Joy and sorrow often walk hand in hand and kids are bound to experience loss, hurt and sadness in their lives. They’ll be left out, heartbroken and lost. And they can become physically or emotionally sick. Dark days will come and perhaps the greatest gift we can offer is our unwavering love, presence and support as they grow through hardship.

Our darkest day came on July 12, 2009. We were living in Abilene, Texas at the time and my husband Michael and I had nervously watched our youngest daughter, Tatum, weaken over the course of a few weeks. She seemed extra tired. She was pale and had a low fever that she couldn’t shake. Her little 3-year-old body started showing too many bruises to explain away by normal play. We finally couldn’t bear it any longer and late one Sunday evening we took her to the ER. Our instincts were right.

As the doctor stepped in to speak with us about her bloodwork; in an instant our world came crashing down. He told us that although he could not confirm for sure, it strongly looked like Tatum had leukemia. In that moment, there was a before and after. Life as we knew it ceased to exist. There is no parenting book or guide to prepare you for a pediatric cancer diagnosis. No one expects this. We were stunned and devastated. Broken to our core. And terrified of the unknown.

Tatum needed to be at Cook Children’s Medical Center as soon as possible. An ambulance was not an option as Tatum’s blood counts were dangerously low and the doctor informed us that the Cook Children’s Teddy Bear Transport team was already in preparation to come to Abilene and fly us to Fort Worth. As we waited, I remember stepping outside to catch my breath.

In that moment, I struggled to form words to pray. Why? Oh how can this be? My soul was broken beyond what I’d ever thought possible. My faith small and spiraling downward. “Save her” was all I could utter.

Looking up, the deep summer night sky was full of stars and time stood still as I finally let myself fall to my knees and cry. As I sat alone, a nurse came outside and wrapped her arm around my shoulders. “Most kids do well with a leukemia diagnosis, mom. Hang on.” It was the first glimmer of hope I had been given and I grasped onto her words tightly. I had to begin to believe in something I couldn’t yet see.

Before I knew it, Tatum and I were flying through that same sky, looking out the window at the stars while Michael had an agonizing drive alone to Fort Worth below us. Tatum had to be strapped to a gurney for the flight, so I was only allowed to rest my cheek near hers and hold her tiny hands. Mercifully, she was not scared. Her sweet spirit was peaceful and calm and watching her in those moments, I knew we had to follow her lead through this new space we were in. We could not let fear, statistics or numbers drive our actions or thoughts. Tatum was already teaching us.

Lesson One: Whatever lay ahead, we would face it together with Tatum leading the way. Our child was more than a set of stats or numbers. Her life had purpose and depth and we had to focus our eyes on her first.

The next day Michael and I were given her official diagnosis; ALL leukemia, Pre-B, standard risk. Her physician, Dr. Kenneth Heym, M.D., a pediatric hematologist-oncologist, did not mince words. Instead, he looked us directly in the eye and said “we know what this is and we know how to treat it. Your daughter has a great chance for a full recovery and we intend to see her through.” More hope.

His confidence, experience and tone literally breathed new life into our weary souls and gave us permission to believe. He gave us an overview of Tatum’s new two-and-a-half year treatment plan and with each word our heads spun at the enormity of it all. He then encouraged us to take a deep breath and focus on the induction phase: 28 days. That was enough. To process the entirety of what lay ahead was excruciatingly hard, so we didn’t try. Tatum was scheduled for surgery the next morning for bone marrow and spinal procedures and to have her port placed for chemotherapy. There was no turning back.

Lesson Two: Don’t look too far ahead. Each day was enough and sometimes even a single moment was all we could bear. Her illness afforded us so little control. Keeping our focus firmly rooted in the present proved to be a valuable tool for our family.

Thankfully, Tatum responded well to treatment. She achieved full remission on day 28 but she was far from done. Leukemia cells love to hide and jump around, causing relapse and research has shown a lengthy treatment frame is needed to keep any stray cancer cells at bay. We had a long road ahead, both figuratively and literally.

It’s a little over two hours from Abilene to Fort Worth and we did a lot of driving back and forth for her treatment needs. And we did our best to settle into our new life of medications, needles and isolation.

With Tatum’s compromised immune system we couldn’t be around many people, and certainly not children. Olivia, our oldest daughter, was 6 at the time and in first grade. One of the worst flu seasons was happening that fall and we made the tough decision to pull her from school to avoid any risk of germs being brought home to Tatum. To give up a school and friends she loved was a sacrifice for Olivia, but she didn’t complain. Her love for Tatum mattered more.

I also had to let go. Before Tatum was diagnosed, I was practicing as a marriage and family therapist but now my work had come to an instant halt. I had the difficult job of calling each client to either refer them or say goodbye. I was now full time mother, nurse, and first grade teacher. But with sacrifice comes immense reward. Michael and I knew the greatest thing we could ever do in our marriage and life together was to raise our girls well and help Tatum heal.

Lesson Three: We had to sacrifice and change our world in many ways. We did what we felt was best at the time for Tatum’s health. Trust yourself, don’t apologize for doing what you feel is right, and don’t allow any negative air into your space at all. We fiercely lived by this principle.

Over the next two years of treatment Tatum had multiple bone marrow aspirations, lumbar punctures, blood transfusions and endured loads of oral and IV chemotherapy. She’d go from having a round belly and “moon-face” from high dose steroids to skinny with no appetite at all. She had several high fevers that sent us to the ER and we spent many nights inpatient at our local hospital as she recovered. Her port was replaced after an infection. The next spring she lost what was left of her beautiful curls. She was unflappable as her daddy clipped her head. You see, leukemia and all its madness was never a barrier for Tatum. She continued to live, laugh, play and love everyone around her. Our home was a safe, calm sanctuary for her to thrive in, filled with her favorite people and things. Olivia became her best friend and truest playmate. We adopted two kittens who were such a comfort. We set up a playset in the backyard. We had chickens and a garden.

We allowed others to care for us as well, through small gifts, meals and prayer when we needed it most. Almost simultaneously life stood still and moved forward with force.

Lesson Four: Keep living in the midst of uncertainty. Don’t let circumstances paralyze you from enjoying life. Be thankful each day for a few things. Focus on others and allow them to care for you as well. Children are fantastic at this and we can learn so much from their example of zest for life.

The light at the end of the tunnel was shining brightly. Tatum’s last day of treatment was marked on the calendar with anticipation and hope. And after two hard years, we escaped to Colorado for a wonderful and healing family trip. We arrived home just in time to turn around the next day for Tatum’s last appointment in Fort Worth. We were excited as she prepared for her last spinal procedure and chemo. We talked with her doctors about port removal and long term follow-up care.

Survivorship.

As we waited in recovery with Tatum after her procedure, two doctors came into the room together. We knew what this meant and the hope we had briefly allowed to take over slowly disappeared as we saw their faces. Leukemia had relapsed in Tatum’s spinal fluid.

This news may have hit us harder than her initial diagnosis as there were no warning signs or symptoms. Every parent of a child with cancer thinks about relapse, but we were blindsided once again. With tears blurring our eyes we listened and tried to make sense of their words. But we were stronger than yesterday. Our renewed faith through our walk with Tatum had spotlighted our strength and resolve. We looked closely at Tatum. She was quietly watching us to determine what was happening and how to respond. She didn’t hesitate long before saying “mom, dad: let’s go. I want out of this room. Either we are going home or we are going upstairs. Let’s get a move on.” Dry your eyes. No pity parties. Movement. So we stood and each of us took one of her tiny hands and stepped forward ready and determined to begin again.

Lesson Five: Don’t put off a wonderful trip, date or moment with those you love. Do the fun things together; whether it’s a game of catch or a roller coaster ride. Each day is full of both promise and uncertainty. And when the unknown comes around again, don’t be held hostage by fear and self-pity. Allow yourself time to feel and process; but then point your arrow forward. And hold onto your hope with a tight fist.

About the Author

Mandy Flaming, LPC, LMFT, is a licensed professional counselor. She's a mother, wife and writer, who enjoys cooking great meals, strumming the banjo, running in Ryan Place and "voraciously reading most anything." Watch for more articles from Mandy detailing her family's life. 

For more information regarding today's blog, visit the following:

• Cook Children's Hematology and Oncology Center
• Leukemia and Lymphoma 
• Acute Lymphoblastic Leukemia (ALL)
• Get to know Kenneth Heym, M.D.

Here are some of their stories:

WHERE DOCTORS LISTEN

Linda Downey was just 12 years old when an eye doctor told her he could see fluid built up behind her eyes. It was 1968 and she knew something was wrong because she had been losing her eyesight and ability to walk over the previous two years.

“Other doctors thought it was psychological, but he said this is serious. She needs to see a neurosurgeon,” Downey said.

She was sent to see a physician at Fort Worth Children’s Hospital, located in the spot where the main building of Cook Children’s sits now. During her stay, she would take rides through the tunnel that connected the adjacent hospital (Texas Health Harris Methodist) to the children’s hospital.

“It was like a roller coaster, but it wasn’t much fun for me because of the fluid on my brain.”

Downey underwent three brain surgeries and finally left Fort Worth Children’s in 1969. Since then, she’s been to Cook Children’s many times to visit her friends’ kids who’ve become patients over the years. She says the difference between then and now is incredible.

“It’s very different than it used to be. There’s much more for children to do,” she said.

One thing that hasn’t changed – doctors listening to their patients.

“At the time, I just needed someone to listen,” Downey explained. “I wouldn’t be alive today if there wasn’t a hospital dedicated to listening to children and their parents.”

A NEW HOME

Mandy Flaming’s family also lives close to Cook Children’s, but not because they planned it that way.

Her daughter, Tatum, had been receiving treatment for leukemia for two years while living in Abilene. During Tatum’s final spinal procedure, doctors discovered she had relapsed. It was then that Tatum’s parents knew they couldn’t go home.

“We knew so much of her treatment would be in patient and our family would be separated if we were to travel back and forth,” said Flaming. “We decided, pretty much overnight, to move to Fort Worth.”

They called on their family and friends who had been offering their help for years and asked for assistance moving. Before they knew it, their home was packed up and on a moving truck headed to North Texas.

“We lived in the Ronald McDonald House for a couple of months while we were trying to get on our feet,” she said. “It was difficult at times because it wasn’t what we wanted, but it was what we had been handed so we were going to face it with bravery and go forward.”

Tatum finished her relapse therapy in 2013 and now see her Cook Children’s oncologist once a year for a checkup.

“We’re so grateful for the doctors and nurses. Anything we can give back, we are more than willing, even if it’s a blue light on our porch.”

“I know I’m stronger than I look and I have a family that loves me and is always here for me. My mom told me that God gives sickness to kids who are strong and can handle the fight. That’s why I’m not sad. God does what he does for a reason and I know I’m going to get better.”

Yesenia started her freshman year of high school last month. While she may not be a typical teenager, she doesn’t let cancer slow her down. She plays tennis and is planning for her future. She wants to become a pediatric nurse and help other young cancer patients get better.

Dora says the hardest part of their cancer journey was the initial diagnosis, but there has been some good to come out of it all.

“It was like a bucket of cold water had been poured on me, as if time froze and they said you’re stopping here. I didn’t have time to react,” said Dora. “We learned a lot about her illness and about how to be strong. It’s been difficult, but it has actually built our bond stronger.” 

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.

“Kallvin has four sisters between the ages of three and eleven. All of them want my attention. My husband and sister help take care of the girls, but it’s still very hard for me to be there for them and be at the hospital,” Brenda said.

She says her son’s cancer diagnosis came as a complete surprise. And when he was admitted to Cook Children’s, she was amazed to see how many other children were facing the same challenges.

“I would have never imagined there were a lot of kids with cancer or the amount of suffering their parents go through.”

She says the families of childhood cancer patients need a lot of support, emotionally and beyond.

“They spend a lot of time in the hospital without many people coming to visit. I would invite the public to get to know these families and patients, or even just smile when you see them.”

She also says that kind of support is what has helped her through this difficult time.

“I would also like to thank our friends and family for every visit, every phone call, every action of love and encouragement. I keep all of those in my heart. Even though the pain has been great, I am sure, that God doesn’t get it wrong.”

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.

Not that long ago, the Hawkins wondered if they would ever get home and return their life to some sort of normalcy. Even today, Melinda, Adalynn's mom, can’t believe how much time her child has spent fighting acute lymphoblastic leukemia (ALL).

Through the end of 2015 and the beginning of 2016, Melinda spent Thanksgiving, Christmas, New Year’s and even her 9-year wedding anniversary with her husband Eddie, with Adalynn at Cook Children’s. During the first few weeks of her stay, Melinda and Eddie didn’t leave the Pediatric Intensive Care Unit at Cook Children’s. Eventually, she and Eddie switched off every night.

Today, Adalynn is in remission. She's started her second round of maitnenance for her cancer. She receives chemo in once a month and steroids the first week of every month at the Grapevine Hematology and Oncology Center. 

Melinda knows her child is doing well for all she's been through, but she welcomes prayers because the long road ahead for her little girl. 

It's already been quite the journey.

"For the first time in a long time, I don't think about her cancer every second of every day," Melinda said. "Adalynn is doing great. She's almost back to her old self. She's smart as a whip and so aware of everything that's happened to her. The other day we were going to pick up her prescriptions up at the medical center and she told everyone she met, 'I have cancer and I have chemo.' She loves the Grapevine clinic. She knows the clinic. She says it's her clinic and the nurses are her friends."

Now, all that remains is a not too distant, horrible memory.

The night before Thanksgiving 2015, Melinda took Adalynn, 18 months old at the time, to Wichita Falls, Texas to spend the holiday with her family. Eddie flew to California to be with his folks.

Adalynn had been running a low grade fever for a couple of weeks that got worse as they drove into Wichita Falls from their home in Saginaw, Texas. As precaution, Melinda took Adalynn to the local urgent care.

By the time they reached the urgent care, Adalynn appeared extremely pale. She bypassed the Urgent Care and went to an ER. Even then, Melinda thought it was probably only an ear infection.

Blood work would show otherwise. Within 30 minutes, doctors came in to tell Melinda they feared her little girl had leukemia and they rushed Adalynn to Cook Children’s.

“I was in shock. I started crying. I scared Adalynn, but I couldn’t help it,” Melinda said. “My husband was in California during all this. I was scared, but we still didn’t realize how bad it actually was.”

Soon, Adalynn was in the Pediatric Intensive Care Unit (PICU). It was then that Kelly Vallance, M.D., a pediatric hematologist and oncologist began to care for not only Adalynn, but her mom too.

“She made it very clear that it wasn’t our fault,” Melinda said. “I loved that because we were like, ‘What did we do wrong?’ I’m sure every parent does that, but it was so good to hear those words from a doctor. I felt bad because we didn’t catch this soon enough. Dr. Vallance said, ‘You don’t know when this started. It could have been only two weeks ago for all we know.’”

In the early morning hours of Thanksgiving as Melinda talked to a nurse, Adalynn’s heart began to fail. The little girl was given CPR for 10 minutes before stabilizing her back.

“She looked like a lifeless baby doll,” Melinda said through sobs. “My sister heard me and she came running down the hall. She grabbed my face so I wouldn’t look in the room.”

Amazingly, after such a traumatic event, Adalynn tried to sit up in her hospital bed and even woke up during two shots of sedation.

That evening, Eddie arrived. Over about an eight hour time period, the Hawkins went from a normal Thanksgiving holiday to thinking their little girl may die.

Adalynn was diagnosed with ALL, Pre b leukemia, which doctors said was curable and treatable. Over the next few days things moved quickly:

• Adalynn stayed on a ventilator and began chemotherapy on Nov. 29, 2015. The next day, Adalynn opened her eyes and began to move more.

• On Dec. 1, she had surgery to put in a Mediport in her chest to receive the chemotherapy. She also received chemo in her spinal fluid while under.

• On Dec. 2, Adalynn was off the ventilator and doing well.

Imagine what your life would be like if this happened to your child and you get a sense of how strong Melinda and Eddie are, but it doesn’t mean that they don’t have their moments.

“It seems like every week my husband and I have a small little break down about how this happened,” Melinda said. “But then we look at her and see how far she’s come and we feel blessed.”

Over the next few months, Adalynn continued her chemo treatments. She has completed her second and third phase.

As she fought her cancer, Adalynn also faced new physical challenges. She had to learn to walk and talk again. She had vocal paralysis from the tubes that had been placed down her throat. But fortunately, everything came back naturally. Her mom said, “she didn’t miss a beat.”

On Dec. 28, Adalynn went into remission and she is showing great signs on her way to recovery. Her mom thanks God for her daughter’s miraculous recovery and looks at the medical care she’s received at Cook Children’s as a gift from heaven. In the same breath as talking about how ICU saved her daughter’s life, she talks about the amazing care the nurses have provided for Adalynn. She laughs when she remembers the nurses insisting on putting her daughter’s hair in pig tails after a bath.

“Cook Children’s has been so wonderful,” Melinda said. “I can’t believe the compassion they have and how amazing they are. I couldn’t imagine being anywhere else. The way Child Life was with her, even when she was kind of out of it, they would still come in and see her. Dr. Vallance was amazing. She was making her last rounds and heard the commotion that first night. She watched her get CPR and held my sister’s hand. She was right there when all that was happening. The entire Oncology Department and PICU hold a special place in our hearts.

Melinda said she and Eddie still have the occassional breakdown when thinking about everything that has happend to their daughter.

But they have made it this far, grateful for their good fortune and saddened for those who haven't been as blessed.

"We are starting September and there's so much awareness about kids with cancer and EraseKidsCancer," Melinda said. "I'm very happy that we are raising awareness, but it's also really hard."

At this point Melinda begins to cry. "We've met a lot of kids while at Cook Children's who aren't there any more. I thank God that Adalynn is Ok, but at the same time my heart breaks for those parents who have lost their children."

As she fights back her tears and says she will continue to pray, Adalynn makes a loud noise in the background. She's on the loose at her home. Those Terrible Twos are at again.

Melinda sighs as she gazes at her daughter.

“Someday she’s going to have an amazing story to tell,” she said.

She already does.

And just in time because she has a date.

"Her goal was to go to homecoming. She went last year with a little boy, and they're going again this year," said Claudia, Izzy's mother.

You may be thinking 11 is a little young for dating. Izzy's mom agrees, but she says she couldn't keep the two fourth graders apart. Especially since the boy has made the five-hour-trip (with his parents, of course) to Fort Worth, Texas from their hometown of Brownfield, Texas several times over the past year to see Izzy at Cook Children’s.

"She's truly an inspiration. I've had adults tell me that Izzy has changed their lives and made them better people. I think that's her purpose in life," said Claudia.

It's hard not to be changed by a kid like Izzy.

She's been in and out of hospitals, battling leukemia, since she was 2 years old. And while she's made friends during her various stays, she's watched many of them leave through the swinging doors at the end of the hallway and never return.

"I feel bad for the families who have been here two weeks, but we've been in here for 12 months and Izzy hasn't left once," said Claudia.

Part of the holdup was the bone marrow transplant Izzy received at Cook Children’s, which can result in six months of recovery in the Transplant Unit.

All of that is behind her now. It's finally Izzy's turn to leave Cook Children's Hematology/Oncology floor and get back home.

Two days before the big Homecoming game.