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11/13/2016 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Matt and Jade noticed a skin mass on Brandon's armpit around age 4 months in May 2016. We contacted our pediatrician. She examined it and recommended he see a pediatric dermatologist. After visiting the ped derm, she recommended a 6 week watch period. After 6 weeks, it was still there and had not changed. She recommended an ultrasound at Peyton Manning Children's hospital. That did not clue in to a diagnosis, so the ped derm did a punch biopsy. The pathology was stuck between a connective tissue nevus- fibroblast type or dermatofibrosarcoma protuberans. The ped derm recommended the mass be excised by a plastic surgeon at Riley Children's Hospital. On October 28, 2016 Brandon went into surgery for the removal. A week later he was official diagnosed with DFSP. That is a soft tissue sarcoma.
We know DFSP only metastasizes in 5% or less of cases, however it is very locally aggressive. It will grow into surrounding muscle, bone, joints, the chest wall, and lymph nodes if not completely removed. Because this cancer normally occurs in adults, it has been challenging to find care for Brandon in Indianapolis. We will be traveling in December to the Mayo Clinic in Rochester, Minnesota to a doctor that has done surgery on pediatric DFSP patients before and claims to see the most DFSP in the country. This is a one in a million disease. It is very rare.
We are hopeful the doctor at Mayo can completely remove it in one surgery. We are praying no skin graft is needed and that the cancer does not regrow. It has a high rate of re-occurance within the first three years after it is removed.
This will probably be a life long journey for Brandon, due to the high rate of reoccurance. If it never reoccurs, we will always be watching and testing for it. We decided to make this site so our friends and family can read about what the latest developments in Brandon's treatment are. We will try to post frequently when we are in Minnesota as well.