Neuroblastoma is a malignant tumor which grows in immature nerve cells of mostly infants and children under the age of ten. Most infants are born with it unknowingly. Some say it is genetic, and tests are still being conducted around the world in laboratories and universities. There are really no answers to why an innocent child is born with a life threatening disease such as this one. I wish there was, though. My daughter Lilyanna was born with stage 4 neuroblastoma. I could probably tell you everything about it.
I don’t have it, but I live with it every day as if this tumor has made its way uninvitingly into my life. First, I want to introduce to you the facts of this specific type of cancer. Facts are something that just doesn’t change, so informing you about the mysterious cycle of this cancer comes first. I would also like to share with you an actual life story about my daughter’s progress with neuroblastoma. First, neuroblastoma is a rare disease that occurs in children under the age of ten, but mostly it is diagnosed before the age of 5. It is a solid mass that is formed by uncontrolled cell growth.
The special cells that abnormally grow are called neuroblasts. Instead of growing normally into nerve cells, they become distracted…something in the process interrupts the cell division and they become cancer cells instead. Scientists believe that the abnormal growth is related to a defect in the genes of a neuroblast cell that allow it to grow uncontrollably. It most commonly starts in the tissue of adrenal glands. Adrenal glands are located right above the kidneys and produce hormones responsible for controlling heart rate, blood pressure, and other important functions.
Like most cancers, neuroblastoma can spread throughout your body to locations such as lymph nodes, skin, liver, and bones. This cancer is slightly more common in boys than in girls and 98% of cases of neuroblastoma aren’t inherited. Childhood cancer is the leading cause of death by disease in the United States. According to allieandfriends. org, it kills more children per year than cystic fibrosis, muscular dystrophy, asthma, and AIDS combined. Each year, Approximately 700 children are diagnosed with neuroblastoma a year and fact that there is no known cure scares me since a child dies every 16 hours from this disease.
Only two special medicines have been produced in the past 20 years for child cancer, but there are positive progresses in other fields. Studies show 5-10 years ago, the average child with any type of cancer undergoing treatment would have a less successful survival rate than they would today. There are specific signs and symptoms to look out for with this disease. The first symptoms are usually vague and include irritability, fatigue, loss of appetite, and fever. Unfortunately, these symptoms are also common in infants alone, with cancer or not which make it difficult to diagnose.
Usually when a doctor feels a lump or mass, more precautions take place. Otherwise, you don’t even know it’s there until the dramatic effect occurs. Now, neuroblastoma can occur in different parts in the body where nerves are present. If you have a tumor in the abdomen, your symptoms would include a swollen stomach, abdominal pain, and decrease or loss of appetite. If the cancer has spread to the bones, your symptoms would include bone pain or soreness, black eyes or bruises, and pale skin. If the cancer has spread to the spinal cord, you would have symptoms including weakness, numbness, inability to move a body part, or difficulty walking.
If you have a tumor in your neck your symptoms include a drooping eyelid, unequal pupils, sweating, and red skin which are a sign or nerve damage in the neck known as Horner’s syndrome. Lastly, if you have cancer in the chest you would have difficulty breathing. When you find your cause of concern and symptoms of this disease, and have to be then diagnosed. This includes a variety of tests which include urine and blood tests, imaging studies such as X-rays, CT scan, MRI, MIBG, ultrasound, bone marrow aspiration, a bone scan, a biopsy (which is a removal and examination of a tissue sample).
All of these tests are in benefit to your child’s health. They can help your oncologist conduct the location of the tumor, size and shape of the mass, and they can tell whether or not the tumor has spread to other areas of the body or not. In most cases, neuroblastoma can be detected by ultrasound before birth, but not in all cases. Treatment is an extreme factor once you have a diagnosis. The type of treatment depends on several factors: the child’s age, characteristics of the tumor, and whether or not the cancer has spread that determine the risk.
There are three risks to take into consideration: low risk, intermediate risk, and high risk. Low risk and intermediate risk patients have a good chance of being cured. High risk patients have more difficulty because their tumor has probably spread to other parts of the body, the size may be substantially large, or the location might be unpleasent, which would be a diagnosis of stage 3 or stage 4 cancers, the 2 worst forms of cancer in any case. Typical treatments include chemotherapy and/or radiation.
Also, depending on the characteristics mentioned earlier, surgery may be performed for removal of the tumor. Another therapy doctors might suggest is called retinoid therapy. Retinoids are a class of substances chemically related to vitamin A and can also help prevent the cancer from returning. Scientists believe that retinoids can help cure neuroblastoma by tricking cancer cells to turn into mature nerve cells. All in all, many children with neuroblastoma have a good chance of survival. Depending on your age, the cancer can be treated easier the younger you are.
Other cancer patients whose cancer have spread or are high-risk are more likely to become resistant to standard therapies or the cancer can return after initially successful treatment. My daughter Lilyanna was diagnosed October 08, 2011 with stage 4 favorable neuroblastoma. The malignant tumor was the size of an orange in her lower left lumber, protruding into her spine. Doctors informed me that if I had waited 2 more weeks to bring her in for a check-up, she wouldn’t have survived. My family and I became curious as her first birthday had passed she still wasn’t walking.
She also had “dancing eyes” and we didn’t know why. We went to her pediatric doctor and to orthopedic doctors and got her tested. We also went to a children’s optometrist. They referred us to Joe Dimaggio Children’s Hospital. There, she was immediately processed into the system as a cancer patient before we got any results back. Everybody knew she had cancer and told us before tests were even performed. Blood and urine were drawn and we went from room to room, doctor to doctor, nurse to nurse. They took her vitals, and then put us in a room.
I didn’t know this room would be our home for the next month, but it was. I couldn’t believe what was going on for I was only 17 years old. I didn’t have the knowledge or the questions; I basically went along with the poking and prodding of my child. It was torture for her and I. One day she had an MRI, the next a MIBG, they tested her hearing for two hours, and then came the serious stuff. Her new oncologist performed a biopsy and a bone marrow aspiration. They cut a 3 inch line into her abdomen and I didn’t even know it until I got her back.
She was put into the PICU (Pediatric Intensive Care Unit) and was drugged up and unstable. I felt helpless. She woke up, dried, and was given pain medication, and went back to sleep. Over and over for 3 days until she was stable. As soon as she was stable we went into another floor of the hospital where patients like her stayed for consecutive days…or weeks…or months, or until they died. It became her home where gifts were given, the playroom was organized by us, and we knew everybody and made friends with our neighbors. Some patients spent time with us, and others mysteriously disappeared.
After her first chemotherapy treatment she was walking! Her eyes stopped moving and a month later we were able to go home. Finally the nightmare was slightly over. We walked the halls enough to earn this trip home. Although we had a strict schedule getting her blood tested twice a week and chemotherapy every 3 weeks, it was still the first step to the cure. We survived days in the hospital, different chemotherapy treatments, her port implant, and every stupid little prick on the finger that made her cry every single time.
After 8 rounds of chemotherapy she went into remission. Her tumor was not completely cured, but it was wafer thin. Now, she is walking, talking, riding her bike and jumping into the pool without a care in the world. Her hair grew back, she doesn’t stop eating now, and she doesn’t have “dancing eyes” anymore. Although she is still on a careful watch with her oncologist doctors having a MRI and MIBG test every 3 months, it’s still progress. Our story is rare because she could have died, and she didn’t.
She ran down the halls with a needle attached to her port after her chemotherapy treatments as if it was normal. We dealt with the tubes and wires, puke baths, constantly making the bed in our “hotel suite”. She made friends and everyone there loved her personality. My only concern is that she could have a relapse in the future, but I know she is a fighter. She has come a long way and I can only thank the hospital’s team for giving my daughter another birthday. I chose to come to City College because I was interested in the Medical Assistant field.
Not for the money, not for the opportunity, but to hopefully become more aware of what is going on with my daughter. I want to be trained enough to help children feel comfortable in any medical situation. I also want to be able to get the training to help my daughter because cancer is a lifelong disease that will never go away. So, every instructor that I have here at City College is only helping my daughter have a trained medical assistant mother to help her as she gets older. Thank you, Professor Grantham!