Married to Paul 29 years, parents of Erik (23), Karl (19), Lesa (13), Aron (9)
Our son Erik:
NB4 6 years old Dec 1991 rt adrenal, nmyc non-amp, 1p del (9 rounds chemo, surgery, autologous bone marrow transplant at DFCI, no accutane, no antibodies, NED 13 years)
Relapse (bone--multiple sites, marrow-- packed with NB) at 20 years old May 2005
Treated at Fargo ND and U of MN:
6 rounds of chemo (2 dox/vin/cyclo and 4 topo/ cyclo)
First person ever stem-cell transplanted with total marrow irradiation conditioning (TMI) Nov 2005;
chemo for SCT busulfan/thiotepa/melphalan;
accutane (6 months)
second relapse: hu14.18-IL2 two rounds, progressed, 3 cycles irino+temo, response, quit treatment for 4 months, progressed, 2 cycles oral fenretinide, progressed, 6 more irino+temo, response--clear scans, BMX+, 3 months (1 cycle) COMBAT oral combo (accutane, celebrex, etoposide, temozolomide).