Ayven began having strange symptoms back in April 2012
when she started vomiting randomly. It was shortly after we had introduced solid foods. After discussion with her pediatrician, we chalked it up to either a food aversion or gas bubbles. Shortly after, Ayven also began to have a swollen, hard belly. Again, after discussion with her doctor, we decided that it may have been caused by a food allergy or an intolerance. She tested negative for a few food allergies, so our next step was to eliminate dairy from her diet. After almost two months of no dairy, and no real change with her stomach issues, we approached the doctor about the possibility of Celiac Disease. Ayven’s symptoms were almost identical, and we were certain that we had finally figured out what was causing her problems. She was sent to our local hospital on Tuesday, December 11, 2012 (Ayven was 15 months old) to have routine blood work and an x-ray to confirm Celiac Disease. To our great surprise, and our worse possible fear, the x-ray raised some red flags and she was sent for an emergency ultrasound. The ultrasound confirmed that our nightmare had become a reality. It showed that she had a tumor the size of a large grapefruit in her abdomen. The tumor was inoperable because of its size, and the fact that it encased her aorta and many major vessels. Ayven was given the official diagnosis of stage III, intermediate risk, neuroblastoma.
She began treatment on 12/14/12. After four rounds of chemotherapy, we took her to MSKCC to discuss surgery with Dr. LaQuaglia. He decided that since Ayven was stage III, MYCN non-amplified, it may be a better option to observe her tumor instead of performing the risky surgery.
Since Ayven’s tumor had been reacting so well to chemo, her doctors decided to go ahead with two more rounds, and eventually two more…a total of eight rounds of chemo.
Ayven’s tumor still encases her aorta and many of the major vessels in her body.
We now are waiting to hear from Dr. L for his recommendations and also Dr. Maris (from CHOP).
We know that our little girl will beat this, and keep the faith!
You can follow Ayven’s updates on facebook: www.facebook.com/SavinAyven