A Neuroblastoma Journey for 6-Year-Old Mason
- Mason Hughes, 6, was diagnosed with stage four neuroblastoma in September 2021. Prior to his diagnosis, doctors dismissed his ailments as growing pains. Now his mother is telling other parents to trust themselves when they think something is wrong with their child.
- 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.
Mason, 6, was diagnosed with stage four neuroblastoma in September 2021. Prior to the diagnosis, Mason had been having on and off stomach aches, until he started becoming ill more often than not. He even had blood tests in July, but they only revealed mild anemia.Read More
“It was awful. I always get so emotional when I speak about it,” his mother, Robyn Hourd, said. “And I feel guilty because, obviously we were taking him to the doctors, I don’t know, I feel like I shouldn’t have believed that he was OK.”
He’s since had multiple rounds of chemotherapy, but Hourd says the treatments “[haven’t] done much.” At the present time, his bone marrow is clear, but he has a long way to go until recovery.
“The day-to-day for Mason is hit and miss. Sometimes he can have really good days, and he can go a few days with being quite well,” Hourd said. “But on days like today, he’s just not wanted to get out of bed at all, and he’s just thrown up all over the bed. It’s just horrible.
“It’s completely different to before, he was so active, he did swimming lessons, gymnastics lessons and bike riding.” \
Reassessments in April will show whether or not his current round of chemotherapy is working, and, if it is, Mason will undergo surgery to remove the tumor followed by hydrotherapy, radiotherapy and more chemotherapy. If his current round does not work, the next step will be to look into clinical trials.
In the meantime, Mason’s aunt is raising funds for the family on GoFundMe, and Hourd is sharing her story as a cautionary tale for other parents.
“I feel like parents should trust their instincts more,” Hourd said. “Because I felt like I did know something was wrong with Mason, but obviously I’m not a trained doctor, so when I was taking him, I was putting my trust in them.”
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.