Lincoln

A Kindergartener Hero

As he walked through the door of his kindergarten classroom on the first day of school, 5-year-old Lincoln was a hero. That very same week, he would triumph over one final cancer treatment on a healing journey that had begun at Children’s Health℠ two and a half years before.

Lincoln was welcomed into his warm, cheery kindergarten classroom by a teacher who already knew him by name (she had taught Lincoln’s sister years earlier). In their tight-knit community, Lincoln’s teacher already knew his story. In fact, she’d been rooting for him all along the way.

Finally, Lincoln joined his classmates and took his place at a tiny chair and desk. As his energetic, fun-loving personality filled the room, his family celebrated this new adventure. An adventure that marked the end of one the greatest challenges they had ever faced.

The Calm Before the Unthinkable

Camey, Facebook Page for Lincoln, April 2021
About 2 weeks ago, I started having a hard time sleeping, thinking of the worst and just all around feeling like there was something just not right. I could feel it, call it what you want, but I felt that something was just off.

One month before his third birthday, Lincoln’s mom, Camey, saw swelling in his neck and noticed his energy level was low. Despite hopes that antibiotics would make it go away, he wasn’t getting better. The next step was to take Lincoln to the Children’s Health℠ emergency department for tests.

Camey remembers exactly what was on her mind before they went in for lab work.

“The night before I took him to the ER, I said to my husband, ‘I don't know why, but I have this deep feeling that this is the calm before the storm,’” she said.

And she was right. The next day, Lincoln’s family was shocked to hear from doctors, “We think it could be leukemia." Lincoln was immediately admitted to Children’s Health in Dallas. A few days later, his diagnosis of Acute Lymphoblastic Leukemia (ALL) was confirmed. And the family met Tamara Slone, M.D., who would be Lincoln’s oncologist.

ALL is a fast-growing cancer that begins in the bone marrow and spreads out to the body through the blood. In the United States, leukemia is the most common form of cancer affecting children. What Lincoln was up against wasn’t rare, but it was aggressive and required immediate action. 

Speeding into the Unknown

Camey, Facebook Page for Lincoln, October 2021
The nurses and doctors on our team are all phenomenal and just make this whole journey as bearable as possible.

Both Camey and her husband, Logan, stayed in the hospital with Lincoln for a month. They were overwhelmed by the daunting treatment plan.

It was difficult for Camey to watch Lincoln begin his treatments.

“He was in pain all the time. His appetite decreased hugely,” Camey said. “It was just one thing after the next. One med after the next. One chemo and then another one. And then hair loss.”

Plenty of people reminded Camey to “take it one day at a time,” but often she felt like she was only surviving by taking it one second at a time.

Despite not knowing what was around each corner, Camey and Logan prided themselves on ensuring that Lincoln knew what was happening.

“We are very big on telling him every step of the process,” Camey insisted. “Telling him exactly what a port is and what it does and how it's helpful to him, and how one day you will lose your hair as well.”

After Lincoln lost his hair due to chemotherapy, Camey remembers reassuring him.

“People may think you look different when you're not different. You’re still YOU,” Camey said.

Support for the Journey

Camey, Facebook Page for Lincoln, November 2021
I hate that we are pros when it comes to hospital stays but I’m happy Lincoln doesn’t look at the experience negatively. We refer to it like it’s a vacation. It’s the hospital hotel where you can have all sorts of room service and as many toys as he could ever want.

Along Lincon’s entire journey at Children’s Health, the family found enormous support from Child Life. Child Life is a unique team dedicated to helping patients understand and cope with their hospital stay and treatment. Child Life delivers support and resources to care for the whole child and family.

At every step, team members helped Lincoln and his family navigate the road ahead.

“The way that they greeted us all the time. The way that they were always checking in on us. I knew that I could contact any one of them if I had any sort of question,” Camey said.

There was always someone bringing Lincoln a toy or something to distract him during a tricky procedure. Camey remembered one special toy.

“One of Lincoln’s favorites was a stuffed toy shaped like a germ,” she said. “They know he has been very interested in learning about viruses. He loved it. He took a picture with it.”

When Lincoln was waiting for test results or a procedure, Child Life provided iPads and toys. Along with the Child Life team, Lincoln also had visits from therapy dogs and musical therapists. Each activity helped ease Lincoln’s journey through difficult moments.

But the support from Child Life also helped Lincoln remain who he was – a curious kid with a love of learning and a whole world to explore.

An Extra Boost

Camey, Facebook Page for Lincoln, August 2021
Blinatumomab could very well be the future standard of care in fighting leukemia. Lincoln is just getting the opportunity to receive it early. For that we are blessed.

After the initial month-long stay, Lincoln only needed to be in the hospital from time to time when he needed chemotherapy. As part of Lincoln’s treatment plan, his family was invited to participate in a clinical trial of a drug called Blinatumomab.

Blinatumomab is not chemotherapy. It’s an immunotherapy drug that stimulates a patient’s immune system. While chemotherapy drugs target all rapidly dividing cells, this immunotherapy drug was designed to specifically target and destroy Lincoln’s leukemia cells.

Even though they opted into the clinical trial, receiving the drug wasn’t guaranteed.

“As soon as we said yes to the trial, they do a randomization. It's a 50/50 chance if you actually receive the drug or not,” she said.

Lincoln was eventually selected to receive the drug.

Blinatumomab was less harsh on Lincoln’s body than chemotherapy and reduced the length of Lincoln’s overall treatment. The family hoped that the clinical trial drug would reduce Lincoln’s chances of relapse down the road. It’s too soon to know the outcome for Lincoln, but his family feels confident in their decision.

“Why say yes to participating in research?” His mom reflected. “For the future of kiddos who will have a diagnosis like Lincoln's. I hope that we can be part of a breakthrough drug that will help others.”

Cancer affects every child differently. Unfortunately, only about 4% of federal funding for cancer research is dedicated to pediatric cancers (Coalition Against Childhood Cancer). Because of these unique experiences and the limited funding, doctors and scientists at Children’s Health continue to rely on donor support to push forward advancements in care – like Lincoln’s clinical trial drug – that can deliver better outcomes for kids.

Lighting the Way Forward

Camey, Facebook Page for Lincoln, August 2023
Yesterday he rang the bell loud for himself, but also for each and every one of those brave warriors out there still fighting and also those beautiful souls that didn’t get the chance to ring it. We know they were with him, standing alongside him, ringing it together.

Three weeks after he started kindergarten, Lincoln returned to Children’s Health to ring the bell and celebrate having completed his treatment plan. And for a few months, the family was enjoying the everyday routine of having three kids in school.      

Then, sadly, on December 13, 2023, labs from one of Lincoln’s monthly check-ups revealed his leukemia had relapsed. Five days after news of his relapse, Lincoln began 28 days of chemotherapy, which meant he spent Christmas in the hospital.

Like they did with the first diagnosis, Lincoln’s doctors had a plan and Lincoln held on to the power he felt ringing the bell.

“We’re taking this one day at a time. We celebrate every victory – and there have been many. Keeping Lincoln’s spirits have been riding high with friends and family shaving their heads in solidarity with him,” Camey said.

And like they did before, the Children’s family has been by their side. They’ve also become even more deeply grateful for the leading-edge care and research advancements that have been made possible thanks to donor support.

“If the chemotherapy works like it’s supposed to, Lincoln will have a bone marrow transplant. If there’s any trace of cancer, we’ll pursue CAR T-cell therapy,” Camey said. “We participated in research the last time and research has brought us these options today. We won’t give up hope.”

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