3/19/1985 - 2/9/2010
Erik first fought high-risk neuroblastoma in 1991-1992 as a 6-7 year old. (MY STORY has entire summary)
He relapsed after 13 years at 20 years old May 2005.
You can see his old journal entries at
Dec 27, 1991
Erik was diagnosed with stage 4 high-risk neuroblastoma 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% NB
Jan 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+temo
April 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 marrow
Mar 23 to Aug 15, 2007: no treatment
July 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 rounds
Sept 24, 2007: scans show more progression in skeletal system, especially entire spine
Oct 2007: two rounds of irino+temo with Celebrex
Nov 2007: great improvement in scans again (few spots in spine, pelvis, femur)
Dec 2007 and Jan 2008: two more rounds of irino + temo with Celebrex
Jan 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 percent) on left side (right sample inadequate); start COMBAT (calendar) or see simplified diagram of COMBAT May 19--oral drugs Accutane, Celebrex, etoposide, temozolomide varied combos on 78 day cycle
Aug 2008: PET/CT clear, and < 1 percent NB in marrow! Continue on COMBAT, 2nd cycle (3 months)
Nov 2008: PET/CT clear, no biopsy performed (too difficult to obtain adequate sample); begin 3rd cycle COMBAT
Feb 2009:No biopsies; no PET/CT (CT of abdomen clear); HVA/VMA normal but slightly higher; start 4th cycle of COMBAT
May 2009:PET/CT shows new spot in pelvis near right hip (SUV 5.8); bone marrow biopsies still positive with <1 percent NB; HVA/VMA normal but slightly higher; start 1st cycle of year 2 of COMBAT
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. 2 wks oral irinotecan + 1 wk oral temozolomide; 250 cGy x 13 days 3D radiation to skull;
College fulltime fall 2009
MIBG scan Sept 3; see Dr Maris in Philadelphia Sept 9
Oct 13 - 16 2009: more NB in all bones, marrow (>90% L), liver, lungs;
Oct 16 MIBG radiation therapy at CHOP (16.8 mCi/kg); low counts 4 weeks
Nov 13 2009: stem cells infused (last rescue)
Dec 14 - 16 scans at CHOP, some reduction in NB (10-20% L)
Dec 17, 2009 start ABT-751 200 mg per day x 7 days (21 d cycle)
Jan 1 doxil 20 mg/m2/2 wks
Jan 12 spine surgery
Jan 16 - Feb 2 radiation to brain and spine
* Feb 9 with the Lord *
The year of the Lord’s favor
Sep 9, 2013 10:29pmAfter more than a year, move cross country, new email addresses, etc, I had lost the login capability. But now I am back! Ha!
With so much news....!
July/Aug 2012 - All the Ludwinskis moved from ND and MN to one of the poorest areas in the US -- McDowell County in WV. Our daughter Lesa accepted the proposal from a fine young man -- Kyler Wilson.
Sept to Dec 2012 - Lesa completed her senior year, we all got adjusted to new house, town, and ministry. I continued to work on research programs for Solving Kids' Cancer from home, and worked on the Community Crossing mission website. Everyone excitedly prepared for Lesa and Kyler's wedding in January!
January 12, 2013 - Lesa and Kyler got married on the most miraculous day -- 75 degrees! They are now expecting a son in November!
Feb to May 2013 - Three years since Erik left us, we are enjoying working, homeschooling Aron, and volunteering for the mission.
June to Aug 2013 - We welcomed our beautiful grandson Benjamin Erik on June 12! Karl and Raeanne (and Kaylen) greeted him in a perfect home birth. Busy mission season with teams coming to serve in the area, and welcoming 5 interns to serve for the summer. Greatly enjoyed meeting the teams and seeing God move in the lives of the team members, homeowners, interns, and our own lives! Enjoyed quick trip to see family and friends in MN. The trip went MUCH too fast!
So here we are! Several people have asked me how we are adjusting. I love it here, and Paul is constantly meeting new people and we are slowly getting plugged in this new community -- it is a big challenge after being in MN so long and knowing everyone in town! Aron is so blessed to have a very big brother-in-law Kyler who looks after him and engages Aron in all he does! Aron enjoys the youth activities, including airsoft, gym nights, and guy workouts. Aron is doing a fabulous job on his schoolwork, and actually tells us regularly how much he loves his school work. He is in 8th grade this year, and sailing along in Algebra 2 and Biology as well as a host of other subjects.
Karl and Raeanne have such a beautiful little family! You just have to see our adorable Kaylen (2 yrs old) and perfect Benjamin (3 months old) to believe me when I say how extremely lovable they are (photos are on CCX website on their staff page!!!) Karl did a great job working on the new internship program for the mission, and revamping the process for teams coming as well as coordinating the teams and their work projects. Raeanne is passionate about natural birth, breastfeeding, and healthy babies, which is a huge need here where 40% of babies born go straight to foster care. Lesa and Kyler are such a joyful, loving couple. Lesa is radiant and we all look forward to meeting their precious son soon!! Kyler oversees the home repair ministry and the Friday night youth program, and Lesa helps to lead the girl's youth group. (See Lesa and Kyler's staff page HERE.)
God works wonders
Reflecting back, after the 2011 week-long mission trip here, God did such a wonderful thing in my heart. After a year of walking the necessary path through grief, God opened my eyes to a world of people everywhere who need help, answers, and hope. Children with cancer (and their parents) still need help, but so do aimless youth without fathers, struggling single mothers, and elderly widows. God has graciously expanded the capacity of my heart, and in the process He has restored such great joy in my First Love -- Jesus! Every day I remember that Erik worshiped Jesus as he drew his last breaths. We all look forward to meeting our Lord and our reunion with Erik some day!
So I am still connected to the many families still fighting cancer in their children. I get frequent requests for help navigating the relapse terrain, and the dark days facing hospice care.... Meanwhile the research projects of Solving Kids' Cancer continue to get more exciting all the time. We really see some great potential with new immunotherapy approaches that are rapidly advancing and showing great results in adults, and so we push to get these in the clinic quickly.
So we welcome everyone to visit! Come and see what the mission is doing, and what life is like tucked in the Appalachian mountains. Or bring a team to serve here!
You will be blessed, and we will be so blessed to welcome you!
To read about the mission here see The Community Crossing website -- isn't it a great website? :)
With great love for you all who lifted us up through Erik's life and death!
Jesus did this!
to comfort all who mourn,
and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.
Guestbook signed 0 times today
Erik loves to hear from YOU!
See WONDERFUL article on Erik:
Erik's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.