No parent expects that common symptoms of illness will be more than just that. When Einat Dado Baralia’s son Shir began exhibiting symptoms that were nothing too out of the ordinary, she was ultimately blindsided when his symptoms led to a diagnosis of a fatal childhood cancer.
Shir was just a toddler when he was diagnosed with neuroblastoma, a cancer primarily affecting children under the age of five. Had his mother brushed off his symptoms as “just little kid things,” her son’s fight for his life might have come to a close much sooner.
Shir had exhibited symptoms that were frequently associated with “kid things,” including but not limited to diarrhea. However, that tummy ache did not subside. His continued excretion was not necessarily more alarming than other symptoms, but his mother knew that she would not wait for it to pass before having him checked out by his doctor.
They wanted to cross everything off of their list. It could be a virus, it could be an allergy – the possibilities were endless. However, the resilience of this mother could not be tarnished.
One of the many devastating aspects of neuroblastoma, the cancer that took Shir too soon and kills around one-third of children with the disease – mostly under five years old – is that the symptoms don’t show up as anything out of the ordinary.
What were some symptoms that led to the neuroblastoma diagnosis?
Shir’s symptoms manifested in diarrhea, though the symptoms a child with neuroblastoma could have can be a range of options. Children diagnosed with neuroblastoma may have weight loss, lumps in their bellies, and pain in their bones, according to the American Cancer Society. Some other symptoms include loss of appetite or feeling already full, problems with going to the bathroom, and bruising around the eyes.
Other symptoms of the disease that may not have raised eyebrows initially include constant watery diarrhea, fever, irritability (caused by high blood pressure), a fast heart rate, flushed skin, and sweating. Though these symptoms were not the first ones to get Einat and her husband, Asaf, to assume that the diagnosis was cancer, they did want to eliminate every possible option before moving on.
They were not going to take the word of a single doctor but would keep seeking answers until one was found and confirmed. It took three months of testing and seeing different medical professionals before Shir’s diagnosis was confirmed as neuroblastoma.
Einat reflected back on this grueling experience. “Medicine and scientific research have advanced so much in recent years. With this, how can it take so long to come across this?”
“Medicine and scientific research have advanced so much in recent years. With this, how can it take so long to come across this?”
Einat Dado Baralia
This emotional roller coaster is what launched an organization in honor of their son’s memory, Shir for Life.
After those three months, Shir was finally diagnosed when an ultrasound revealed a massive tumor in his stomach. “Widespread metastases. Stage 4. High risk. It was the first time we ever heard this frightening word – ‘neuroblastoma,’” the organization writes.
“I could see with my own eyes in the ultrasound, that Shir has a very big tumor in his belly…Within a week of this terrible news, Shir had started treatment in our hometown in Israel,” she told the Magazine. “After five long, hard months of chemotherapy, immunotherapy, and surgeries in Israel, which did not leave an impression on Shir’s cancer, we left with our entire family and moved to New York to continue the treatment in a great hospital under a highly renowned doctor in New York.
“Even before treatments in New York began, first scans showed that the cancer was out of control and spread significantly in Shir’s lungs,” his mother said, choked up with an overwhelming sense of emotion. “It’s not only spots now, but big masses. And a genuine question mark was raised whether we should go back to Israel even before we started.”
There was no chance this family would give up hope. They would work to the last minute to make sure that they had done every possible thing to keep him alive and well.
Though he may not be standing here today, embracing the childhood that was brutally stolen from him, there is no doubt that he is looking down from up high at his parents’ ongoing fight to make sure other children are given access to treatment and testing to help diagnose and eradicate this disease early on.
Understanding neuroblastoma – diagnosis and treatment
A rare form of childhood cancer that develops in parts of the peripheral nervous system, neuroblastoma primarily occurs in infants and children ranging from infancy to five years old.
Childhood cancer may not be as rare as we think. Data provided by Shir for Life, as well as the American and the Israel Cancer Associations, shows that childhood cancer rates had been on the rise in the preceding decades but have stabilized since 2010.
In Israel, 300 to 400 children will receive a cancer diagnosis annually. In the United States, around 9,910 children under the age of 15 will be diagnosed with cancer.
“Despite the fact that neuroblastoma is common in about 8% of childhood cancers, it is responsible for some 12% of the causes of death due to cancer in children,” Einat said. “Every year, 15,000 kids will be diagnosed with this disease, and the mortality rate is just horrifying.”
Of those 15,000, more than 5,000 will die, despite constant invasive treatment due to late diagnosis, by which time it will have reached stage four cancer and become metastatic.
Shir’s parents were greatly troubled by the slow rates of treatment and lack of research in respect of neuroblastoma, whose symptoms are unknown in most cases. This created a burning desire in their hearts to raise funds to enable physician-researchers, such as Dr. Yael Mosse, to push extensively for roll-out clinical trials in order to help find a cure and ultimately to eradicate the disease.
After seeking treatment outside of Israel at New York’s Memorial Sloan Kettering Cancer Center, and still falling short of the ultimate goal of finding a cure, this Israeli couple was connected to Dr. Yael Mosse, a pediatric oncologist and physician-scientist, who studied at Tel Aviv University’s Sackler School of Medicine. Like Shir’s parents, Mosse genuinely wanted to make sure that Shir was given every last fighting chance.
Though it is clear that Mosse approaches every patient with love and care as she would her own children, her connection with Shir also turned into a lifelong friendship and partnership of action with his parents.
“I wanted to know, and still want to know, what is the fuel that cancer thrives on? How can we keep the disease from outsmarting us? Cancer is truly thousands of different diseases, and we can only effectively eradicate it if we know where it comes from,” Mosse told the Magazine.
Mosse, who has been working at the Children’s Hospital of Philadelphia for 20 years, has noted that it really does not get easier between cases, no matter how much time has passed.
“Especially in neuroblastoma, the disease looks different from kid to kid. Heterogeneity makes it hard to develop treatments. We’ve learned that this cancer, and cancer in general, sheds DNA into the bloodstream. With methods like liquid biopsies, a process that doctors have been using for adult cancer cases for years, more can be done at every stage,” Mosse said.
Persistence in the face of adversity
Mosse met Shir and his family after six months of chemo and antibody therapy, though it was increasingly clear that the disease was resistant. Before beginning treatments that may or may not be able to help prolong his life, Mosse had doctors back Israel describe the risks associated with what they would be trying to do. It was important to her that the family be fully briefed in Hebrew, to ensure full understanding.
They agreed, and proceeded to build a relationship while trying to give Shir the best fighting chance possible.
Mosse’s connection with Shir, who despite being gravely ill was still happy, as children so often are in such circumstances, really connected her further to the work she was doing.
He was still singing, dancing, and being cheerful. “All I can see is this beautiful boy who just smiled. He had these amazing dimples. He danced and sang with his siblings, and his laughter was larger than life,” she recalled.
She expressed a sense of responsibility to help this child, and her connection with the family quickly became an unbreakable bond that has endured through the years.
“Einat and Asaf, after Shir died, not only were devastated, but there was this immediate fire in Einat’s soul that was so palpable. She’s someone you can see wants to make a big difference – and she wants to do it now.”
Now donations are needed more than ever to provide for clinical trials of liquid radiation for children. When children and their disease have genetic deformations, it creates further resistant cases and frequent relapses. Should the funding become available to make this childhood cancer-specific testing clinically approved, the pediatric test could be rolled out by the summer of 2023.
It has become increasingly clear that Einat Dado Baralia, Dr. Yael Mosse, and Shir for Life operate toward a specific goal: Some day, this won’t be an issue for anyone. They will push until this disease has been eradicated.
“Not one more child should have to suffer from this. If I can change the fate of one kid, I can rest peacefully,” Einat said. “Neuroblastoma may impact fewer people, but that does not make it any less worthy,” she asserted.
Shir for Life wants to make sure that life can constantly evolve, especially for these children.
For more information: www.shirforlife.com
