After a routine vaccination in October 2009, my daughter Medi developed a sore throat and a cough. I became concerned when Medi lost her voice for a couple of days and even became reluctant to whisper. Her pediatrician examined her chest and told me he couldn’t hear any fluid in her lungs but as a precautionary measure, recommended a chest x-ray to rule out pneumonia. I will be eternally grateful to him for that. The radiologist identified something ‘unusual’ and recommended an esophagram, for a suspected hiatal hernia. Having ruled out a hernia, Medi underwent an MRI and was diagnosed with a possible malignant thoracic neuroblastoma tumor. I have never felt such shock, fear and disbelief.  As we drove to the Children’s Hospital of Philadelphia (CHOP) that evening, my friend told me over the phone, what it was and staging prognosis - again, my heart sank as I dared to think about the possibility of losing her.
 
Medi was diagnosed with Stage 2 ganglioneuroblastoma, a nervous system cancer, in November 2009. It's a rare tumor that occurs in less than 5 out of 1,000,000 children per year. She had 95% of the paraspinal tumor successfully removed on November 12, 2009 at CHOP. The tumor was in her lower abdomen in front of her spinal column – it measured 6cm by 2cm. They were unable to remove the tumor in its entirety because of its spinal proximity, and the danger of severing nerves, causing paralysis.
 
We continue to have Medi monitored with a scan every three months for the next couple of years. The small cluster of cells that remain contain trace pockets of malignancy which need consistent and careful monitoring with MIBG and CT scanning. There is a 20% chance of the tumor growing back, and in this instance Medi would require chemotherapy.  We remain hopeful that the cells will remain unchanged.
 
More than half of neuroblastoma cases are diagnosed at untreatable stage 4 because symptoms are mild and hard to diagnose. Medi exhibited no symptoms.  I thank ALSF for all their hard work in helping to eradicate childhood cancer.
 
Written by Catherine Jones Sheffield, Medi’s Mother
03/10