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 *
Feb 8, 2014 10:47pmBeing a hopelessly quantitative thinker, I am always tempted to look for significance in numbers.
God seems to be more qualitative.
Even though Moses writes in Psalm 90:12
the rest of the chapter contrasts God's eternity with our brief moment here.
So teach us to number our days,
That we may present to You a heart of wisdom.
What about the quality of our days? Is that not more important than the quantity? What really matters if you live 24 years or 80 years?
You turn man back into dust
And say, “Return, O children of men.”
For a thousand years in Your sight
Are like yesterday when it passes by,
Or as a watch in the night.
Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away.
Therefore be careful how you walk, not as unwise men but as wise, making the most of your time, because the days are evil. So then do not be foolish, but understand what the will of the Lord is.
He has told you, O man, what is good;
And what does the Lord require of you
But to do justice, to love kindness,
And to walk humbly with your God?
So I will not try so hard to look for significance in the 4 years since Erik died. I will find meaning instead in the quality of his 24 years of life, and the impact he had on me and so many who knew him and loved him. Erik understood his time was short, he made the most of his days, he lived as wise and not foolish, he loved kindness and walked humbly with God. He worshiped God as He entered His presence on that last day. Read HERE what Erik wrote the last few months and last few days as he finished his race. Start at the end and go backwards, and see the work of God.
How I praise Jesus who heals our pain and gives us deep insight to His love and sacrifice for us. He supplies grace and peace and extreme joy, and gives us purpose and passion to serve Him!
I am overawed by all God has shown us these past 4 years, and all the years before that. He has provided such opportunities to glorify Him! People sin and create chaos. Children keep dying from cancer. Broken hearts and broken lives are every where. It is so terrible. But God's mercy and grace are never exhausted. His healing power is infinite.
God is so good!
I will praise You with all my heart, Lord my God,
and will honor Your name forever.
PS Read HERE about the new direction God is taking Karl and Raeanne as they serve here in McDowell County WV!
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