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Erik Ludwinski 
Erik in "Merry Old England" at Epcot!
PLEASE PRAISE GOD FOR ERIK
AND PRAY FOR HEALING!
Isaiah 58:8
Then your light will break forth like the dawn,
and your healing will quickly appear;
then your righteousness will go before you,
and the glory of the Lord will be your rear guard.
CLICK THE BARS below to expand or collapse the "extras"....Art Video See Erik's graduation slide show--or click for full screenClick PLAY below to hear Erik tell his story! Neuroblastoma Conference Chicago 2007 History Dec 27, 1991Erik 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, 2005Erik was diagnosed with recurrent neuroblastoma at 20 years old in bone and marrow He was in remission for one year Nov 10, 2006Erik 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.
He was again in remission for one year
FOR SECOND RELAPSE (2006-2008):
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!!! (first clear biopsies in 18 months)
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 Quote What Erik says about his cancer experience:
"It took away my job, but it gave me better values.
It took my hearing, but it gave me an appreciation for what I can hear.
It took some of my feeling, but it gave me more compassion for others.
It took my stamina, but it gave me a willingness to serve.
It took away a lot of fun I could have had, but it gave me a love for life.
It took my muscles, but it gave me a bigger heart.
It took my spirit, but gave me a stronger one in its place.
It took part of my life, but it gave me an experience I don’t regret." Friends  Please also pray for Anna, who is the same age as Erik and has neuroblastoma as well. She has been continuously treated for the past 6 years
her website is www.annabanana.org
Also, urgent prayers are needed for Joe (no website) who is 26 and has relapsed four times since his first dx at 9, Max, Sam, Janie , Spencer , Katie and Amber Dugan (carepages) among many friends fighting neuroblastoma and other pediatric cancers.
And please pray for those parents trying to keep going without their little ones.
Sadly Emily lost her battle May 12--she was 7 years old and has a twin sister MaryGrace.Contact My Myspace page:  My Facebook page:  Check out the SCANS in "view photos"...and
PLEASE SIGN THE GUEST BOOK!
Psalms 31:7
"I will be glad and rejoice in your love,
for you saw my affliction
and knew the anguish of my soul."
See Erik's Disney Trip photos...courtesy of LUNCH FOR LIFE!
PHOTOS
Journal
Saturday, May 17, 2008 12:09 AM CDT Ahhhh. Saturday!!!
It is really feeling like spring.
After cis-retinoic acid (Accutane) was denied, our awesome NP Jody straightened out insurance and got it approved in record time. All drugs in hand, and Erik is ready to start Monday.
His counts are great (PLT 107 and ANC 800) and we all expect this not to hit his counts much at all. The main thing is watching triglycerides, since he is starting out so high and cisRA can raise it. No word yet on the rest of the lipid panel.
After picking up all the drugs, I looked at the totals. (I am hopelessly quantitative in my thinking).
If you are interested you can see his drug calendar here: COMBAT (calendar)
cisRA (claratin generic for accutane) is $10 per capsule, he takes five a day for two weeks, three times in 13 weeks. Etoposide is $49 per pill, 21 days per 13 weeks. Celebrex is only $5 per pill, so $10 per day for all but two weeks in 13 weeks. Temodar is the shocker at $249 per day for 6 weeks out of every 13 weeks. The grand total is $14,500 for 13 weeks, or an average of just over $1100 per week. If he stays on it a year it will cost $58,000 in just drugs, and that doesn't include ANY clinic visits, blood tests, or scans or biopsies...or other drugs like zofran to help with nausea ($50 per pill)....
wow.
All that for a low-dose "easy" oral chemo to maximize quality of life and keep the cancer down.
Meanwhile please add Sam to your prayers--his parents just found out he progressed and he is starting a new treatment to beat back the NB.
Blessings to you,
Donna
Read Journal History
Hospital Information: Fairview--University of Minnesota
500 Harvard Street SE
Minneapolis MN 55455
Links: http://www.beebo.info/ned/nedwarriors.html Neuroblastoma kids
http://www.geocities.com/neuroblastoma_awareness/ more neuroblastoma kids
http://www.nbhope.org/ NB research, information, conferences, and more
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