Wednesday, September 9, 2009


Another amazing story, of a brave warrior who is currently fighting neuroblastoma for the 3rd time. Here is a bit about amazing Erik

Background Story

Dec 27, 1991

Erik was diagnosed with stage 4 high-risk neuroblastoma (cancer of the sympathetic nervous system) at 6 years old. He was in remission and very healthy for 13 years

May 12, 2005

Erik was diagnosed with recurrent neuroblastoma at 20 years old in bone and marrow. He was in remission for one year

Nov 10, 2006

Erik relapsed again at 21 years old in bone and marrow

FRONTLINE TREATMENT (1991-1992)for high-risk neuroblastoma at Dana Farber and Boston Children's (right adrenal primary, bone+bone marrow packed, MYCN non-amp, 1p del, poor histology, diploid DNA):9 rounds chemo, surgery, 16 doses radiation to abdomen, autologous bone marrow transplant, no retinoids or antibodies

TREATMENT FOR FIRST RELAPSE (2005-2006): two rounds dox/vin/cyclo and four rounds topo/cyclo at MeritCare Fargo, ND and U of MN. Erik was the world's first patient to undergo a stem cell transplant with head-to-toe total marrow irradiation conditioning (included busulfan, melphalan, and thiotepa) at University of Minnesota-Fairview in Minneapolis (Nov 2005).He was on high-dose 13-cis-retinoic acid (Accutane) for 6 months.

FOR SECOND RELAPSE (2006-2009): Nov and Dec 2006: two courses of hu14.18-IL2 antibody trial (Phase II), but progressed with skull, spine, pelvis, and femur involvement, and bone marrow biopsy showed 70% NBJan 15, 2007: began IV irinotecan (2 weeks) + oral temozolomide (1 week) and had a miraculous response after two courses!!!Feb 20 & 21, 2007: scans dramatically improved, bone marrow biopsies clear!!!March 2007: one more round irino+temoApril 26, 2007: scans were again significantly improved, only two light spots remain in pelvis, two light spots in spine, faint uptake in femurs, and small amount in marrowMar 23 to Aug 15, 2007: no treatmentJuly 31, 2007: scans showed five spots in spine, one spot in pelvis, femurs clear, and biopsy (right side) positive Aug 15, 2007:started new oral formulation of fenretinide (Phase I trial); completed 2 roundsSept 24, 2007: scans show more progression in skeletal system, especially entire spineOct 2007: two rounds of irino+temo with CelebrexNov 2007: great improvement in scans again (few spots in spine, pelvis, femur)Dec 2007 and Jan 2008: two more rounds of irino + temo with CelebrexJan 31 & Feb 1, 2008: scans "borderline normal" with faint uptake remaining in marrow, and bone marrow biopsies clear!!!Mar & April 2008: two more rounds of irino + temo with Celebrex; also gallbladder surgery (2/21) and another hospitalization (3/29 to 4/1) for fever May 2008: PET/CT normal; bone marrow biopsy positive (NB<3 href="">COMBAT (calendar)or see simplified diagram of COMBAT May 19--oral drugs Accutane, Celebrex, etoposide, temozolomide varied combos on 78 day cycleAug 2008: PET/CT clear, and < href="">Treatment and Response since 2nd Relapse

Aug 2009: new skull lesion (4.6x1.5 cm on MRI), rt hip worse (cortical bone destruction), entire spine, lung nodule 0.8 cm and ill-defined liver spot. Started 2 wks oral irinotecan + 1 wk oral temozolomide; started 250 cGy x 13 days 3D conformal radiation to skull; started back to college. MIBG scan Sept 3 and consult with Dr Maris in Philadelphia Sept 9

So Erik is currently fighting again - but through all this is still studying , still being a mentor to other young adults and kids fighting neuroblastoma, still trying to raise funds for research, still smiling and living life to the full.

Erik has the most amazing attitude and amazing outlook on life . He talks at the Neuroblastoma conference held every year and motivates, inspires and drives more to be done to find the cure

Donna, Eriks amazing Mom is such a wonderful advocate for her son and for the entire neuroblastoma community. Donna is so up to date with treatments and options , side effects and most of all the best advise to give parents. She is truly amazing.

Please pray for Erik to find the right options to get him back to NED, that he is pain free and can continue doing all the things he loves doing and living life to the full. You can visit Erik and his family at

We continue to pray for you Erik and Donna and look forward to celebrating good news with you soon. God Bless and lots of love

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