Cecilia Crockett is accomplishing "important stuff," even in death

By Courtney Finafrock, Riley Children's Health videographer, cfinafrock@iuhealth.org

Among her five brothers and sisters, Cecilia Crockett was the second youngest in her family. Her mom, Allison, said she was everyone's sweetheart.

"She was daddy's little girl on the farm," Allison said. "Loved to be outside. Probably her best friends in the world, just right here in our home, are her siblings."

Like every family facing medical issues, Allison and Benjamin Crockett never imagined the trajectory their lives would take after Cecilia, then four years old, began vomiting and complaining of headaches on their way home from a 2022 spring break trip.

"It was probably only a matter of a couple of weeks and then one of her eyes quit tracking," Allison said.

At that point, Allison made a call to their family doctor who ordered testing.

"I think the comment was after just a couple of simple tests, the comment was, "'I want a CT scan yesterday,'" Allison and Ben said in unison.

Allison said the doctor called soon after the scan and told her to drop everything and head to Riley's emergency room with Cecilia. She will never forget the doctor's news.

"She's got a golf ball-sized mass in the geographic center of her brain," Allison recalled of the message.

Benjamin explained that doctors realized quickly that the mass was blocking the flow of cerebral spinal fluid and causing hydrocephalus.

"So, they went in and did an emergency surgery to relieve the pressure, put in a shunt," Benjamin explained. "And it was during that time that we were with one of our early doctors, Doctor Balsara, that he sat with Allison in a consulting room and said words to us that that are so true; He just said something to the effect of, 'your lives are never going to be the same. This will change everything.'"

After Cecilia's diagnosis, Allison scoured the internet for every bit of information she could find on the type of tumor in her daughter's brain.

"The probability of success was very, very low, and the amount of research that existed there was just very little," Benjamin explained. "We made a decision to start down the path of chemotherapy first."

Merely two weeks passed before their young daughter took a turn for the worse. Even her oncologist, Dr. Alex Lion, commented on how dire Cecilia's situation was at that point.

"So, the tumor hemorrhaged and she had hydrocephalus again, but really, really, really bad," Benjamin explained. "They pretty much said you've probably got about 24 hours."

Allison said together they made the decision to bring Cecilia home on hospice care; then a miracle happened.

"She recovered," Allison said.

Benjamin explained they decided to make a phone call to the team at Riley.

"We're like, 'this is miraculous,'" Benjamin explained. "Do you think that we should try chemo again?"

The Crocketts brought Cecilia back to Riley for an MRI and discovered the tumor actually shrank, though she still had lesions down her spine. Cecilia started her second round of chemo in August and then a third round of chemo on December 1, 2022.

"That round was awful," Allison recalled.

The Crocketts made the decision to do a resection on January 11, 2023. The surgery took hours, and Benjamin and Allison remembered the powerful moment of prayer over Cecilia that morning.

"Dr. Lion came and Dr. [Jignesh] Tailor came, and some of the leaders of the hospital system that we knew came, and then the nurses started just all gathering," The Crocketts remembered. We gathered and said a prayer and just prayed that things would go well. We didn't know if she would survive the surgery."

Following the resection, the Crocketts were forced to make the most difficult decision to date: whether Cecilia would continue her fight with radiation or return home to her beloved farm with her siblings. Allison explained that doctors told her that, aside from not curing Cecilia of her cancer, it would require the family to split up as Allison would head to Cincinnati with Cecilia for treatment while Benjamin and other family members would care for the other Crockett children. Also, Allsion said doctors explained that radiation would likely alter her personality, and her IQ would drop.

"We, for our family, decided that we would not go to radiation, that we wanted to preserve Cecilia and her brain for who she was right then and not put her through that, especially because they told us, as we were getting ready to make the decision, that it would not be curative," Allison said.

As Cecilia's health continued to decline, Allison continued to search for information on end-of-life care for patients with brain tumors. She stumbled upon several from Great Britain that offered her and Benjamin a choice that could keep Cecilia's fight going.

"At least one of them said at the end, if you know that you're going to lose this battle and you feel like maybe there's some time, then maybe consider donating your child's brain for research," Allison said.

Benjamin said it took him some time to come to terms with making a decision about his little girl's brain tissue, after all, at that point, Cecilia's health had once again improved and she was having a wonderful time on the farm.

"No longer has a pain pump," Benjamin said. "She's just having a wonderful summer back home. To have this thought of, I'm going to make a commitment to potentially donate tissue, brain tissue, for research was painful at first, but over just a couple of days, we had a lot of dialogue together. If we did lose the battle, this is something we could do."

Cecilia passed away July 19, 2023, at merely five and a half years old. Benjamin tearfully remembers feeling Cecilia's heart beat for the last time following a nap with her mom. Shortly after, the family officially donated their daughter's brain for research.

Dr. Tailor is a pediatric neurosurgeon and an assistant professor of neurological surgery at the Indiana University School of Medicine. It is him and his team of researchers who are helping to advance pediatric tumor research using Cecilia's brain tissue.

"It's a big deal," Dr. Tailor said of Cecilia's donation. "A lot of times we lose the battle of fighting brain cancer because we don't have the right treatments to offer. The biggest problem is that we often don't know why. We don't know why that tumor progressed because we are not able to study that end game. We're not able to study what happened to the cells. Having the opportunity to do a deep dive into that tumor and ask the question, 'why did we fail,' is not always possible unless you have access to that tissue, and that's what the Crockett family provided. They provided the opportunity for us to at least ask the question."

The Pediatric Neuro-Oncology Research Fund at Riley Children's Hospital

Along with donating Cecilia's brain, Benjamin and Allison decided to devote even more of their lives to pediatric cancer research. Through a contract with the Riley Children's Foundation, they pulled together funds from Cecilia's life insurance and their savings to create The Pediatric Neuro-Oncology Research Fund at Riley Children's Hospital.

Through sowing the first $25,000 in 2024, the Crocketts were able to name the fund and direct the fund. Now, that fund holds around $850,000.

"We wanted it to have a generic name," Allison explained. "We want to support the research that's going on in this lab and at Riley Children's Hospital, and we don't want it specifically to feel like, oh, other people wouldn't want to donate if their child died of a brain tumor because that's her thing. It has a just the generic the Pediatric Neuro-Oncology Research Fund at Riley Children's Hospital because it belongs to everyone."

"I have important stuff to do."

One memory permanently marked in Benjamin's mind is an early morning at Riley in 2022, shortly after Cecilia underwent a shunt surgery. She unexpectedly popped up in bed and asked her dad if they could wake up. Benjamin said he asked his daughter, "How are you so brave?"

How Cecilia responded would become the family's motto.

"With perfect clarity [Cecilia] said, "I have important stuff to do," and that has been kind of a theme that we've had," Benjamin said.

As donations continue pouring in for the Pediatric Neuro-Oncology Research Fund at Riley Children's Health, the Crocketts feel its success is divine.

"It's really organically has its own momentum that cannot be explained, except that there's important stuff that needs to be done, and the children should not be dying from something that we can cure, if there's enough research to do it," Allison said. "So, let's get in the lab and let's solve this like we've solved other problems, because I think the knowledge and the science and the technology is all there."

Dr. Lion thoughtfully expressed how brain donation and growing this fund can give families some peace who are left to grieve their children.

"Some of the things I think about are our families asking the question, "'why,'" Dr. Lion said. "It seems meaningless that a child would be diagnosed with disseminated brain cancer without a standard of care. This family, as well as the second family who participated in the brain donation program, they both talked about how they believed the body was not the full existence, that this donation should help others, because we believe there is a future time when there will be a restoration of all things. For us to be able to do this, it's an inbreaking of meaning now. For her to have this amazing gift given actually means the fight is still going on even though she has died."

Though their hearts are broken, the Crocketts find new purpose in helping future children and families who will stare down this brutal diagnosis.

"I truly believe that that's why we're here," Benjamin said. "God's giving us an experience to grow and learn, and that comes with pain and suffering and death. But out of it can come lots of good and growth and help helping others."

Benjamin and Allison also acknowledged that this battle forces the whole family to fight, and that can be immensely difficult when there are other growing children.

"What I really want them to know is that we are still their parents and we are still a family, even though she's not here, and even though now we have ones that are kind of leaving the nest, like the core home group, like we're still here for you," Allison said. "We love you just as much as any of the rest of them. They are wonderful children, each of them and all of them together."