If you talk to Caitlin Schwartz for even a few minutes, you will learn she is wise beyond her years. In the last two years of her life, she has endured more than most can even imagine. Still, she wears an infectious smile and shares her story with clarity, humor, and resilience. 

Caitlin’s Diagnosis

In September of 2021, Caitlin woke up to a pain in her right shoulder. She thought she might have slept on it wrong or hurt it in gymnastics, which she practiced once a week. Caitlin and her mom, Jessica Allen, initially didn’t give the pain much thought. But when it grew progressively worse over the next couple of months, they decided to make an appointment with her pediatrician.

Four weeks later, a pediatric orthopedic specialist took X-rays of Caitlin’s shoulder and initially suspected that her shoulder blade was broken. Caitlin got an MRI that same day and received the results a day later.

Jessica, who is a teacher, was in her classroom when she got the life-changing phone call. Caitlin had not broken her shoulder blade — she had cancer. Jessica first took Caitlin to Cook Children’s as soon as possible and was admitted just a couple of days later. 

“They diagnosed me with Ewing Sarcoma in my right shoulder blade,” Caitlin said. Ewing Sarcoma, named after Dr. James Ewing, who first described the tumor in the 1920s, is a rare type of bone cancer that most commonly occurs in children and teens. By the time Caitlin’s tumor was discovered, it was so large that it covered her entire shoulder. Thankfully, her cancer was stage two and was isolated to her shoulder.  

Only the Beginning

For the next six months, Caitlin completed chemotherapy at Cook Children’s. Starting in May of 2022, she underwent a total of 36 sessions of proton radiation on her shoulder at Texas Oncology. Caitlin experienced every side effect in the book from chemotherapy, including hair loss, nausea, and weight loss. She also got radiation burns, for which she had to take special medication.

Miraculously, by the time Caitlin had finished all of her treatment in October of 2022, her scans were clear. She and her family enjoyed a huge celebration for her birthday, the end of chemo, and achieving remission. Little did they know, Caitlin’s battle was far from over. 

Caitlin went back to school for only three days before she started to feel extremely sick. Jessica brought her back to Cook Children’s for emergency lab work. Shortly thereafter, Kenneth Heym, M.D., of Cook Children’s Hematology and Oncology, diagnosed her with Secondary Acute Myeloid Leukemia (AML). 

“She just totally threw everybody for a loop when she came into the hospital and her blood counts were abnormal,” Dr. Heym said.

Caitlin had contracted AML from one of the chemotherapies used to treat her Ewing Sarcoma. “Secondary leukemia can happen after treatment for solid tumors like Caitlin’s, but it’s pretty rare,” he says.

Jessica wasted no time in asking Dr. Heym for a prognosis — and he told her the survival rate for AML was very low.

“He told Caitlin she had a less than 50% chance to beat this,” Jessica said. According to Caitlin, Dr. Heym had “never been so straight up.”

“We know that secondary leukemias that are caused by chemotherapy are very, very difficult to treat,” Dr. Heym said. “And if you want to cure them, your only chance is going to be bone marrow transplants.”

The problem is, bone marrow transplants won’t work unless the patient is in remission — which is very hard to achieve with AML. 

“She was understandably upset because she was looking forward to being done,” Dr. Heym said. “But she still maintained that positivity and that smile and that snarkiness and all of those features that just endear you to her immediately.”

Restarting

To treat Caitlin’s AML, Dr. Heym started her on what he calls “blow you out of the water” chemotherapy. It was extremely harsh on Caitlin’s body and ultimately unsuccessful. Luckily, he found a clinical trial at MD Anderson Cancer Center in Houston for patients Caitlin’s age with her leukemia’s specific type of genetic abnormality. 

Caitlin and her mom headed to MD Anderson. After a few trips back and forth, Caitlin was admitted in January of 2023 to start the clinical trial protocol. Caitlin started on a new form of chemotherapy, which her body responded to much better than the first.

She also began the clinical trial drug itself — a Menin inhibitor, which is in clinical development for the treatment of genetically defined subsets of acute leukemia.

Once again, Caitlin made a remarkable recovery. After completing her clinical trial, her AML was gone.

“They said she was the fastest person to ever achieve remission there,” Jessica said. According to Dr. Heym, Caitlin’s remission is “nothing short of a miracle.”

The next step in Caitlin’s treatment was her bone marrow transplant.

“She's basically restarting her body, but with my good cells and my good blood in hopes to keep her cancer away and prevent relapse,” said Jessica, who was her transplant donor.

Caitlin completed her transplant on May 4 of this year. Her family and doctors refer to that date as her “rebirth day.” The aftermath was extremely tedious on Caitlin’s body, and she was hospitalized for almost seven weeks.

“Nothing Short of a Miracle”

Despite wreaking havoc on Caitlin’s body, her bone marrow transplant was incredibly successful.

Though Caitlin’s labs look great and she’s been doing exceptionally well, she has run into some hiccups with side effects. She developed a hematoma, had some chemoport issues, and developed pericardial effusion, which is a buildup of fluid around the heart. She is still fighting to get her immune system back to normal and even though she is in remission, she is not out of the woods quite yet.

“There is still a good chance that her leukemia is going to come back, and if it does, it's going to be that much harder to treat,” Dr. Heym said. “But she’s beaten the odds so far in terms of where she's gotten and how well she's doing, so if anybody’s going to continue to do that, it's going to be Caitlin.”

Caitlin recently got cleared to start taking her Menin inhibitor again post-transplant. Because transplants wipe out all immunizations, she will stay home from school for another year and start immunizations in the spring. Her original Ewing tumor is still on her shoulder, but it’s much smaller than it was and will eventually turn into scar tissue. Moving forward, Caitlin will continue to have follow-up appointments for her side effects and will be closely monitored to ensure her AML and Ewing Sarcoma stay in remission. 

Finding Joy and Sharing Smiles

Throughout her battle, Caitlin has found joy in the hospital’s fur babies and friends she’s met along the way.

“If a dog wasn't hanging around, she would ask a nurse to go find her one,” Jessica laughs.

Caitlin also made friends with other kids and families wherever she went, whether it was on the HO floor at Cook Children’s, at MD Anderson, or anywhere in between. “We joked that she was the mayor of the floor when she was here because she would just walk around talking to everybody,” Dr. Heym says with a smile.

Caitlin has also selflessly volunteered to participate in Cook Children’s research studies. “She wanted to help other kiddos from the beginning,” Jessica said. “I also told her that other kiddos need to hear her story because she might have a friend who’s diagnosed with something similar one day.”

Right now, Jessica and Caitlin are taking every new day in remission as it comes and leaning on their village of family and friends for support.

“We're working on just being able to be a kid again and do all the stuff we've missed out on the last two years,” Jessica said. “We’re just looking forward to some kind of normalcy after all of this.”

Through it all, Jessica and Caitlin have learned to cherish the time they have together.

“When you have to watch your kiddo fight for her life, it just forces you to move everything else to the back burner,” Jessica said.

She admits that when Caitlin was diagnosed with AML, she didn’t think she would make it to Christmas. Caitlin, with her tenacious spirit, chimes in, “I didn’t think that!” It’s no wonder cancer has been no match for her.

“No child that age should be challenged as much as she has,” Dr. Heym said. “But she continues to show us that she's going to meet every challenge with courage, grace, humor, and attitude. Nothing, whether it's cancer or the treatment, is going to stop Caitlin from being Caitlin. And I feel lucky to have been able to help take care of her.”

To keep up with Caitlin’s journey, follow Jessica on Instagram @thestoryofthree. 

“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.”