Parents of New York Toddler Thought The One-Year-Old Had COVID; It Turned Out To Be Stage 4 Cancer

"She was not herself. It was the weirdest thing," Jamie Scholl, Ellyannah's mother, said. "She wouldn't drink much and she was, like, puking randomly. And she was screaming and moving her muscles like things hurt her."

Scholl originally thought her toddler had COVID-19, but doctors eventually discovered a mass near Ellyannah's left kidney. Since then, she’s received five rounds of chemotherapy with her sixth coming next week. Given the treatment schedule and necessary monitoring, Ellyannah and her parents are sometimes at New York hospitals for weeks.

"I have to live out of a duffel bag, because there always can be an emergency," Scholl said.

Thankfully, Ellyannah has responded well to treatment thus far. And though it’s been a hard road for everyone involved, Scholl says she’d do anything and go anywhere to see her daughter get better.

"If I have to travel to Mexico, I'll travel to Mexico," she said.

Understanding Neuroblastoma

Neuroblastoma is a type of cancer that starts in certain very early forms of nerve cells, most often found in an embryo or fetus. In fact, neuroblastoma is “by far the most common cancer in infants (younger than 1 year old)” with about 700 to 800 new cases each year in the United States.

Neuroblastomas can be found anywhere along the sympathetic nervous system a part of the autonomic nervous system (the system that controls bodily functions like heart rate, breathing, blood pressure, digestion and others.) The sympathetic nervous system includes:

• Nerve fibers that run along either side the spinal cord.
• Clusters of nerve cells called ganglia (plural of ganglion) at certain points along the path of the nerve fibers.
• Nerve-like cells found in the medulla (center) of the adrenal glands. The adrenals are small glands that sit on top of each kidney. These glands make hormones (such as adrenaline [epinephrine]) that help control heart rate, blood pressure, blood sugar, and how the body reacts to stress.

Symptoms of this type of cancer vary since neuroblastoma can start in different places in the body, and neuroblastoma cells can also sometimes release chemicals called hormones, which can affect other parts of the body. According to the American Cancer Society, some of the more common symptoms can include:

• Lump or swelling in the child’s belly that doesn’t seem to hurt
• Swelling in the legs or in the upper chest, neck, and face
• Problems with breathing or swallowing
• Weight loss
• Not eating or complaining about feeling full
• Problems with bowel movements or urinating
• Pain in bones
• Lumps or bumps under the skin, which may appear blue
• Drooping eyelid and small pupil (the black area in the center of the eye) in one eye
• Problems being able to feel or move parts of the body
• Eyes that appear to bulge and/or bruising around the eyes

Signs and symptoms might be different depending on where the tumor is, how large it is, how far it has spread and if the tumor makes hormones. It’s also important to note that many of these symptoms can be caused by things other than this cancer. Regardless, you should always investigate any changes to your child’s health.

Advocating for Your Child

Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. When it comes to a child, the parent must become the advocate just as we saw in the case above.

The Impact of a Childhood Cancer Diagnosis on the Whole Family Jayne Wexler Shares Her Story

And even if you're called 'pushy' or people dismiss the concerns you have for your child, it's important to remember that you never know when speaking up about a seemingly unproblematic issue can lead to a very important diagnosis cancer or otherwise.

"Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is," Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."

Be Pushy, Be Your Own Advocate… Don't Settle

In a previous interview with SurvivorNet, April Knowles also talked about self advocacy and explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.

I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer

"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."

Figuring out whether or not you have or your child has cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way make sure you are or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it's essential to talk with multiple medical professionals.

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