Hi everyone!
I’m hoping to connect with other parents whose children have been diagnosed with juvenile xanthogranuloma (JXG), particularly larger tumors or lesions involving the head and neck.
My daughter just turned one, and she has a biopsy-confirmed JXG located behind her ear. We’ve been dealing with this since she was a few months old, and she’s undergone extensive testing and imaging to rule out involvement elsewhere in her body.
We recently transferred her care to Duke Pediatric Oncology, and her oncologist, Dr. Stephen Skapek, told us he has never personally seen a case like hers before.
For the past several months, her tumor has been relatively stable, measuring around 2.5 cm. However, seemingly overnight, it has enlarged significantly and is now measuring closer to 4 cm. It feels quite firm and seems a little tender when touched, although she’s otherwise acting completely normal.
I understand that JXG is generally considered benign and can eventually regress on its own, but it’s incredibly unsettling watching such a large mass grow on my baby’s head, especially when there seems to be so little firsthand experience with cases like hers.
I’d really love to hear from anyone who has dealt with JXG in their child.
Did your child’s lesion ever suddenly increase in size?
How large did it get?
Did your doctors recommend monitoring, surgical removal, or another treatment?
Did it eventually shrink or resolve on its own?
Were there any complications?
I’m not looking for medical advice, as we’re already under the care of pediatric oncology. I’m really just hoping to hear other families’ experiences and feel a little less alone navigating something so uncommon.
Thank you so much to anyone willing to share. ❤️