“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.”

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.

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.