Understanding Neuroblastoma
- Isabelle Grundy was 5 when she was diagnosed with stage four neuroblastoma. Her devastating diagnosis came after she complained to her mother, Louisa Moss, of a sore stomach and Moss subsequently found a lump.
- 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).
- Grief is an unavoidable and essential part of the healing process following the loss of a loved one to cancer, but things like therapy can help.
Isabelle was always a “happy little girl” before the summer of 2021. On June 30, she woke up and complained of a sore stomach to her mother, Louisa Moss. Moss kept her daughter home from school that day thinking Isabelle had a stomach bug, but her condition only grew worse throughout the day.
Read MoreAfter days of terrible worry and going back and forth to many doctors, Moss was eventually told that her then 5-year-old daughter had stage four neuroblastoma.
From there, Isabelle’s treatment included chemotherapy and blood transplants. But, in a devastating turn of events, 6-year-old Isabelle did not beat the aggressive cancer.
"Courageous, Strong, Brave, fearless, a true hero and warrior, she fought until the very end. Her fight is finally over and she can rest in peace without any more pain and sorrow,” Moss said in a heartbreaking statement. “Life just simply will not be the same, a void in all our lives, one that we will try to fill with happy and treasured memories and love that she gave immeasurably.
“Our hearts are shattered. No matter how we try to rebuild them there will always be a piece missing. The most precious six years.”
SurvivorNet wanted to share Isabelle’s story to educate others about this disease in the hopes that tragedies like this one never happen again.
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.
Losing a Loved one to Cancer
Grief is an inevitable and essential part of the healing process after losing a loved one to cancer. And there's definitely no one way to cope, but Doug Wendt shared his thoughts on grief in a previous interview with SurvivorNet after losing his wife Alice to ovarian cancer.
"We're never gonna move on, I don't even think I want to move on, but I do want to move forward," Wendt said. "That's an important distinction, and I encourage anybody who goes through this journey as a caregiver and then has to face loss, to think very carefully about how to move forward."
Everyone's journey of grief looks different, but therapy and support groups can also be wonderful options to explore. It's also important to keep in mind that time does not heal everything, but it certainly helps.
In an earlier interview with SurvivorNet, Camila Legaspi shared her own advice on grief after her mother died of breast cancer. For her, therapy made all the difference.
"Therapy Saved My Life": After Losing A Loved One, Don't Be Afraid To Ask For Help
"Therapy saved my life," Legaspi said. "I was dealing with some really intense anxiety and depression at that point. It just changed my life, because I was so drained by all the negativity that was going on. Going to a therapist helped me realize that there was still so much out there for me, that I still had my family, that I still had my siblings."
Legaspi also wanted to remind people that even though it can be an incredibly difficult experience to process, things will get better.
"When you lose someone, it's really, really, really hard," Legaspi said. "I'm so happy that I talked to my therapist. Keep your chin up, and it's going to be OK. No matter what happens, it's going to be OK."
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