by Linda L Kinyon

Created on: October 10, 2007   Last Updated: April 22, 2011

Neuroblastoma, My daughters rare disease

What is Neuroblastoma? Neuroblastoma is a rare cancer of the sympathetic nervous system, a nerve network that carries messages from the brain throughout the body. It forms solid tumors, which take the form of a lump or mass, these tumors commonly begin in one of the adrenal glands, though they can also develop in nerve tissues in the neck, chest, abdomen, or pelvis. Though this form of cancer is normally only found in children, in rare instances it can also occur in adults.

My family history for this disease goes back well over 70 years. In infancy, my uncle at age 3 months died of this disease, in previous generations several infants died of "stomach" tumors (the doctor's now believe they were most likely neuroblastoma but at the time there was no definitive diagnosis). I had a cousin die at age 4 months of neuroblastoma, my sister died just past her 2nd birthday, my aunt (a very rare case) died as an adult of the disease and lastly I had one daughter die just shy of her 2nd birthday due to complications of this dreaded disease. Unfortunately, at the time of my first daughters death the doctors still were not certain it could be familial (genetic).

15 years after my daughters death, I had a routine ultrasound during the 7th month of my pregnancy. I knew immediately something was wrong. The tech was very concerned and went for the doctor. The doctor came in and continued the exam. I finally asked her, "What is that 'blob' there by her kidney?" "Well, that is what we are going to talk about" she replied. As she proceeded to tell me it was "just a cyst and fluid filled", I had a sense of dread pass over me. I calmly told her, "No, its cancer...I had another daughter die of neuroblastoma and an aunt, uncle, cousin, and a sister." The doctor looked at me and for a moment I thought she was just going to pass me off as another neurotic parent. She instead asked me for more details of my family history. Thankfully this doctor took me seriously and put me in contact with a pediatric oncologist. My daughter was born 3 weeks early via C-section. Within an hour of her birth she was in having a CAT scan. 3 weeks later we finally had our appointment with the pediatric oncologist.

The pediatric oncologist wanted some further testing. She scheduled our daughter for an MRI and some other tests. She then called social services and had them get us a room for the night. (we live about 65 miles from her clinic). During the MRI our daughter

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