Pediatric Melanoma

[stephanie83]

Good morning, all

My son was diagnosed with stage 3b melanoma when he was 3 years old. At the time, I thought melanoma was strictly an old person's disease. Or a disease that people got from tanning too much. I had no clue that genetics played such a huge role. His melanoma started as a tiny spot on his face. As it turns out, that tiny spot actually went from his eye socket to his jaw bone under the skin. After two surgeries (one to remove all of the tumor and the closest lymph node and another to remove the remaining lymph nodes), a year of interferon, and countless scans and blood tests - happy to say he is NED! He's now a 7 year old rock star who loves baseball and plans to be a doctor one day (he says he wants to go into gastro because... well... butts 'n guts).

Please feel free to reach out anytime!

[Toniff]

Thanks for sharing. I need to hear good stories. How often does he have PET scans? We've been NED for 18 months and finished our interferon last month? I just want to make sure we are getting all of the right scans and tests with the right frequency. My son had his mole in his scalp and enlarged lymph node in his neck with melanoma cells.

[missyrand Ambassador in reply to Toniff]

Congratulations on completing interferon for your son, Toniff.

[missyrand Ambassador]

Hi Stephanie. What a blessing to hear how successful your son’s treatment was. He must be a tough fella to have partnered with surgery and interferon at such a young age. I wonder if you might consider reaching out to Lilmama who has a teenage daughter currently in treatment?

[Saumann]

Wow what a story! I’m so glad your son is thriving. We didn’t know much about melanoma but as is turns out my children and grandchildren have a 50% chance of carrying the cndk2a gene mutation. 3 of my sons have this FAMMM ( Familia Atypical Multiple Melanoma Syndrome). I have a son yet to be tested and a daughter who doesn’t want to know. We live “as if” they have it.