What Is Neuroblastoma?
- James Lewis, 3, was left unable to walk after experiencing leg and stomach pains caused by cancer. Doctors originally thought he had COVID-19, but later tests and scans revealed the truth: 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, with varying symptoms depending on where the tumor is, how large it is, how far it has spread and if the tumor makes hormones. It is by far the most common cancer in infants (younger than 1 year old).
- Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. But when it comes to a child, the parent must become the advocate and make sure any possible signs of cancer are fully and expeditiously addressed.
The parents of James Lewis, 3, know all about what it’s like to watch your child battle cancer. James began struggling with symptoms when his stomach and leg pains became so intense he couldn’t even walk. But when his parents brought him to a hospital, doctors first decided he was experiencing symptoms of COVID-19.Read More
“It’s been hard and absolutely devastating,” James’ father Ashley Lewis, 33, said. “We’re so worried about his health. It’s been a stressful experience for the whole family, going back and forth to the hospital. It has been hard as we haven’t been able to go out anywhere just in case James catches anything. So we’re missing out on family stuff and time together.”
Ashley went on to explain that the diagnosis initially left him and his wife with a lot of anger.
“But we’re trying to keep it positive for the kids,” he said. “And I think it’s easier to be more positive now because of the way he’s reacting to it. You get days when you’re down and days when you’re up but you can’t dwell on it – because there is nothing you can do, you just have to get through it.”
James is, thankfully, over halfway done with his 80 days of chemotherapy and “coping well.”
“He’s doing brilliantly with it, and you know he’s feeling ok because he’s still running around being a dinosaur,” the father said. “He’s starting to lose his hair now and has the odd tantrum with it, which is understandable as he’s going through a lot, but he’s so far responding well to the chemotherapy.”
Following chemotherapy, James will have more MRIs for doctors to see how he’s responded to the treatments before he undergoes surgery to remove the tumor in his stomach. In the meantime, James’ immediate and extended family has decided to fundraise for LATCH – a local charity that supports the children and their families who are being treated by the Oncology Unit at the Children’s Hospital of Wales –
“When we found out about James, there was nothing we could do, and it was heart-breaking,” Ashley’s brother, Daniel Lewis, 36, who set up the family’s fundraising page said. “Apart from being there for Ashley and his family during this time, you can’t actually do anything and you feel helpless.
“So I think doing this for LATCH with Ashley is the one thing myself and family can do to help fund LATCH to support other families. It’s a horrible situation and I wouldn’t wish it upon anyone. It’s what my brother and I can give back to LATCH for all the support they’ve given the family.”
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.
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.”
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,” 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.