The truth about infantile cancer

Rachel Leman

Links to CJ’s and Lily’s GoFundMe pages are available at the bottom of the story.
 
The only time Sara Tilkens laughed when talking about her son was at the thought of it all being over. ‘It,’ in this case being the overwhelming stress and concern over her infant’s cancer treatment.
Sara is not a stranger to cancer. Her uncle died after a lifetime as a smoker, but she is newly introduced to the unpreventable kind. Remembering her uncle’s passing, she shrugs it off as an expected outcome due to his chain smoking. But when it comes to the diagnosis of her sixth-month old son, she shakes her head and says, “he doesn’t deserve this.”
Christian “CJ” Tilkens was born seven weeks premature in October of 2017. His parents, Sara and Ryan of DeWitt, Iowa, had their first son, Aaron, four years prior, but the circumstances surrounding CJ’s arrival caused Sara and Ryan to become the nervous parents they had never been before. Not only was CJ born much earlier than anticipated, but he was born with blood in his stool. While this turned out to be nothing, the testing and waiting and nerves that would become Sara and Ryan’s new normal started then.
Throughout the first few months, CJ had trouble breathing and was developing at a relatively slow rate. Sara and Ryan just assumed his problems were results of his premature birth, but even with trips in and out of hospitals during his first few months, nothing was determined. It wasn’t until April that the word “cancer” was considered. Following a biopsy and second looks at previous x-rays, they discovered that CJ had a baseball-sized tumor in his abdomen.
CJ has the most common form of infantile cancer known as neuroblastoma. Neuroblasts are a type of fetal nerve cell that usually develops into normal cells following birth. In the case of neuroblastoma, these cells instead become cancerous and grow rapidly into tumors. The cancer comes from embryonic cells, meaning that from the moment CJ was born, he had cancer.
However, CJ’s youth is one of the only things keeping Sara sane. She said the only good thing about their case is that “he’s not going to remember this.”
Neuroblastoma can have anywhere between a 50 and 95 percent survival rate, depending on the risk level of the patient. Neuroblastoma treatment plans are similar to most types of cancer, involving either surgery, chemotherapy or radiation, sometimes including more than one. According to St. Jude Children’s Research Hospital, lower-risk patients usually can get by with chemotherapy and surgery, but the higher the risk of the patient, meaning the more advanced the tumor growth and placement, the more difficult treatment is. If the risk is high enough, some patients require a stem-cell transplant.
Also known as a bone marrow transplant, a stem-cell transplant might be required due to the effects of chemotherapy or radiation treatment. Higher doses of chemo and radiation are used on higher-risk patients to kill the cancer cells, but in the process can also kill the stem-cells in bone marrow used to create the blood cells that all people need to live. To remedy that side-effect, some high-risk cancer patients need a stem-cell transplant following their cancer treatment.
For CJ, his is a relatively treatable case. While it had its difficulties, following four rounds of chemotherapy and the surgical removal of the remaining tumor, CJ has a high chance of survival and a low chance of recurrence. In the case of 1-year-old Lily Sbaiti, however, treatment was not so straight-forward.
Lily had a completely normal birth to parents Kerri Rogers and Ryan Sbaiti from Pittsboro, North Carolina. Because she wasn’t born premature like CJ, she didn’t have her first check-up until she was already 9 months old. By that time, the tumor in between her kidneys was the size of an adult fist and had already spread to her liver. Within a couple of days, she went from a non-symptomatic baby girl to a stage four neuroblastoma patient.
Lily’s treatment plan had to start with chemotherapy immediately since her team at the University of North Carolina Cancer Hospital (UNC) believed her tumor to be inoperable. But after four rounds of moderate-strength chemotherapy, Lily’s family was told that while they hadn’t grown, none of her tumors had gotten any smaller, meaning that around the time of her first birthday, Lily would have to undergo four more rounds of high-risk chemo. Soon doctors will start harvesting Lily’s stem-cells to prepare for a probable transplant.
But Lily’s tumor has disseminated, meaning it’s spread throughout her body, which, in combination with her lack of response to the first rounds of chemo, has made Lily’s grandmother, Mandy, doubt the help Lily can get at UNC.
“I’m not very optimistic,” Mandy said. She even ventured to call Lily “unsaveable” at UNC, which led her to accept the opportunity to send Lily’s case to Memorial-Sloan Kettering in New York City.
Memorial-Sloan Kettering is one of the highest ranked private cancer centers in the world, well known for operating on tumors previously called “inoperable” – cases like Lily’s. At the moment, Lily is still enduring her second chemo treatment, but come August 16, Mandy just wants to find new hope in a trip to New York.
CJ and Lily have no relation to each other. CJ’s life began early and allowed his cancer to be caught sooner. He has a mother who teaches at a Catholic school in Davenport and a dad in IT analysis. Both parents are college graduates who have been married for five years. They waited until their mid-twenties to have kids. They took all the commonly referred “normal” steps to adulthood, but still found themselves in an unexpected and hurtful position.
Kerri and Ryan found themselves pregnant with Lily after a very short time of dating. Neither Kerri nor Ryan fully grasp the idea of what’s happening with their daughter, but both love her and put her first in all their life decisions. Kerri’s still in school for early childhood education at a local community college. Both work as bartenders and both live with their parents. Neither can afford to do anything else. As Kerri’s mother put it, taking care of Lily is “a full time job” in itself, “It’s hard enough as it is with an infant.”
This is the reality of pediatric cancer: it can affect a child from a typical American-Dream family or a baby from a single-parent household in rural Nebraska.
CJ and Lily could not be farther from each other, but both had guardians that said that same thing about their situations: childhood cancer can’t be understood until it happens, so people don’t understand the good outside help does.
Sara and Ryan had friends and family throw a benefit in support of CJ and emphasized the help they had received from local organizations like Dance Marathon the Pinky Swear Foundation. Lily and her family essentially had their entire town rally behind them. Both families had someone start a GoFundMe to help with medical and travel expenses. While each had their own struggles and frustrations and each will have their own stories to tell after, any lessons they take are universal: pediatric cancer is common and the help that comes from experiencing it can renew faith in humanity.
 
CJ Tilken’s GoFundMe: https://www.gofundme.com/CJCancerFight
Lily Sbaiti GoFundMe: https://www.gofundme.com/unwq6m-lily039s-fight