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My Story

Erik Paul Ludwinski
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

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

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.

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 *


Donna Ludwinski posted a new journal entry, "4 years".

Being a hopelessly quantitative thinker, I am always tempted to look for significance in numbers. God seems to be more qualitative. Even though Moses writes ... Read more

Patti Hook signed Erik's Guestbook.

DONNA PAUL and growing family,This is your fellow NB warriors Patti Hook Virnig and family. I tried to contact you on Erik's aniversaries but alas, your addresses and ... Read more

Cris & Suzanne Friedrickson signed Erik's Guestbook.

Donna--I hope to some day have the time to read Erik's journal entries.  I'm encouraged by your faith in God!  Bless you for all your efforts in the fight against ... Read more

Kris Huson signed Erik's Guestbook.

You and Erik are often in my thoughts, especially in February. I hope you are well. Read more

Tony Kamp signed Erik's Guestbook.

Donna and FamilyWe are grateful to have shared some that short time with the big Erik (ashe was known in our home) and your family. You are all so amazing and ... Read more

A signed Erik's Guestbook.

Thanks for sharing. It's very appreciated!  I think of this anniversary date since we have a family birthday on the 10 th and in 2010 were heading into the Supi, Grand ... Read more

Claire & Rex signed Erik's Guestbook.

Donna, we are thinking of you as you and your family mark this anniversary. With our own grief so raw, I think of what you might have felt then, and am in awe that you ... Read more

Janet Forvour signed Erik's Guestbook.

Dear Donna, Although we've never met, I have to say that this is not the first time that your post has helped me at a time when I need it the most. Donna when you posted ... Read more

Robin Kriens signed Erik's Guestbook.

Having just finished the book "Choosing to SEE" by Mary Beth Chapman, I am more keenly aware that your pain as a mom of losing your child still must be intense some days! ... Read more

Ah Suzy signed Erik's Guestbook.

As usual my friend, you manage to bring to tears, tears that are mixed with both sadness and joy.I, of course, am sad because I would have preferred to have more time here ... Read more

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