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. 

Those words haunt me. I do not remember what was said next, mainly because a wave of fear and dread engulfed my body. The day I was diagnosed with breast cancer my life changed, forever. The greatest change, the greatest loss, is the sense of invulnerability you have when you are healthy, when you are not in pain.

What followed was a rapid fire series of tests, decisions, surgery, chemotherapy. The speed at which I felt my "normal self" being consumed by the world of cancer was overwhelming. Through it all, I kept thinking of all my patients and their families who have battled cancer through the years. I relived every moment of those cancer conversations. The anticipatory nausea I had prior to walking into a room to deliver the results every parent dreads. The shock and tears and anger that followed the horrific news I had just given.

And every time, I watched my sweet patients and their families turn and face their battle with a grace and dignity that astounded me.

Now that I am a cancer patient, I am even more astounded. I am lucky. I have breast cancer. I knew going into treatment that my cancer, Breast Cancer, receives the highest proportion of research funding by both the government and the private sector.

I knew that although my particular type of cancer tends to be aggressive, because of the hundreds of millions of dollars poured into breast cancer research each year that new chemotherapeutic, hormonal, immunologic and targeted agents now exist that raised my survival rate to 99 percent at 10 years. I also knew that amazing new medications exist for adults that make the side effects of chemotherapy far more tolerable than they were previously.Children with cancer are not as fortunate. Pediatric cancer is grossly underfunded. Last year alone, the National Cancer Institute (NCI) spent 96 percent of its budget on adult cancer and only 4 percent on childhood cancers.

The NCI funded $584 million for breast cancer and only $26.4 million for ALL pediatric cancers combined. This doesn't even begin to take into account private sector and pharmacologic company sponsored funding, which largely goes to support adult cancer research. In fact, research and development of new drugs from pharmaceutical companies makes up more than 60 percent of funding for adult cancer drugs and almost zero for pediatric cancers.

Because of this lack of funding, in the past TWENTY YEARS there have only been two chemotherapeutic agents approved by the FDA for the use in children. More than half of the chemotherapies used in children are over 25 years old. I cannot begin to imagine the COURAGE it would take to fight a cancer battle armed with the knowledge that my best weapons are more than 25 years old.Some people argue adults get cancer more frequently than children and that's why the funding is greater. But when you stop to consider productive years lost by a cancer diagnosis, the effects aren't even close to equivocal.

The average age for adult cancer diagnosis is 67 with an average number of years lost to cancer of 15. The average age of diagnosis for a child is 6 with the average number of years lost to cancer of 71 years.

SEVENTY-ONE years lost.

Imagine if we could have the HEART to change those numbers. Children with cancer could grow up, fall in love, and have their own children. Imagine if we used our BRAINS to find new ways to fund childhood cancer research. These young cancer survivors could go to college, create beautiful art, make new discoveries that could change our world and perhaps find a cure for cancer.

It's October and in case you haven't noticed the world has turned pink for Breast Cancer Awareness month. I am a breast cancer survivor. This message is for all the women in my life. My patients, their Mommies, my colleagues, friends and family. And, for all the women in their lives. One in eight of you will get breast cancer.

Many women think that because there has not been a case of breast cancer in their Family they do not need to be concerned. This is not true. Only 20 percent of breast cancers are familial. You are at risk for breast cancer if you have breasts. 

If you would like to donate to Cook Children's, please visit this page. Learn how Cook Children's is helping to fight cancer.

About the author

Sandra Peak, M.D., is a Cook Children's pediatrician in Lewisville. She earned a B.A. degree in English and psychology from Baylor University, which helps her communicate with the children she treats today. After Baylor, she followed her passion and attended medical school at University of Texas Health Science Center in San Antonio. Her pediatric residency was at Arkansas Children’s Hospital in Little Rock, where she participated in Angel One emergency helicopter transport service. While there, she also received the Jocelyn Elders Award for excellence in community service. Dr. Peaks returned to her home town of Dallas in 1998 and established a Pediatric Practice in neighboring Carrollton, Texas. She joined Cook Children's Physician Network in Lewisville in 2004.