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Nick’s Story

PLEASE HELP US RAISE MONEY FOR New Treatments at Memorial Sloan Kettering

People ask what can we do....

 Become a monthly band of parents donor at 

Participate in our second annual Band of Parents golf tournament at Chantilly National on 4/30/2012



After an appendicitis attack in June 05 the surgeon saw a small cyst on the back of his pelvic wall and on the spine. He thought it was congenital and ordered a cat scan a few weeks later. On Aug. 17th we discovered that we were in the awful nightmare of neuroblastoma diagnosis. He never had a symptom. He was stage 4 with packed marrow and extensive MIBG involvement. We packed and left for NYcity and receive all treatment at Sloan-Kettering Cancer Center.

Nick has received

5 induction chemo rounds using cytoxin//doxyrubicin/adromyacin,vincristine cisplatin, etopocide

round 6 was vincristine, cytoxin and topetecan

Minimal Residual marrow involvement, 7th round with Irinotecan/Temador, iv and oral.

After 3rd round had 11 hour surgery complete resection. MIBG follow up was totally CLEAR!



Started 3f8 antibodies April 10- one round finished clearing marrow, announced on May 2, 2006 created hama

Hama gone 3 weeks later,

Second round. completed then got shingles. 5 days in hospital.

Radiation 14 doses/7 days, July 06

Switch to double dose antibodies one week instead of two/ per protocol change at Sloan, Sept. 06 Continued NED until scans in April 07 several spots on bone.

One year on Irino/temador always slow improvement. Bowel obstruction and surgery July 08, continued for more irino/temador until Sept. 08. Tried to get ABT751 off study because he didn't have progression and was as close to NED as possible with only faint uptake on a couple of ribs. Decided to do 3 rounds of Temador/celebrex/thalidomid... great quality of life, enjoyed senior year of high school until scans in Jan. reveal massive relapse with multiple lesions on bony areas and two bone marrow aspirates positive. Currently recovering from a mid dose round of cyclo/topo/vincristine.

After one medium dose and one low dose round aspirates clear but bony lesions persistent.  Opted for clinical trial at CHOP in Philadelphia using ultratrace mibg therapy.  Tough, tough therapy on Nick.  BUT outcome..... no marrow disease and all cancer gone but one faint spot on left hip.  Started ABT751 in July 09.  Graduated high school, started college.  Bowel obstruction again, rushed home from college MIRACLE cleared with no surgery in two days. 

Latest Journal Update

I've started the final section of the book...

32 people hearted this



Rebecca Beidler
By Rebecca Beidler
What a sweet kiddo...
Colette B
By prayer warrior Colette
Thank you so much for sharing. My God continue to heal the sorrow in your hearts. Surrounding you with Love Light and Blessings.
Joan Fletcher
By Love - Joan
Good for you to move along even when it is so hard. I am looking forward to reading it and learning from you and from Nick.
Kathy Jasien
By Kathy Jasien
Beautiful wording! Beautiful meaning! Great job Caryn, and the guidance of Nicks spirit has been with you throughout !! Xo
Gail Doyle
By Gail Doyle
So full of love and a beautiful tribute to Nick
Joan Moody-Tyson
By Joan Moody-Tyson
Beautiful. Just beautiful and full of love. God Bless You