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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

To Live Like Nick Did takes on a whole new meaning!!

For those of you not on Facebook as my "friend"  there is an exciting online campaign going on right now!  My oldest son Jeff who is the drummer for the world famous group Thievery Corporation has been growing dreadlocks for almost 7 years.  As they took on a life of their own they became a metaphor for "letting go of things you can't control". 

Now, he wants to give back by shaving his dreads in a campaign to raise funds to help get the next 3 trials into clinic that Band of Parents is currently helping to fund at Sloan, Chop and St. Jude.

It would mean so much to have our caringbridge family support this cause.  No amount is too small! He has 15 dreads and his goal is 15.000.00 in the next two weeks.  We will videotape the shave and use it to bring more awareness. 

A portion of the money will also go to help an organization in New York that was our lifeline during treatment.  Barbara Zobian runs Candlelighters NYC and she makes sure people have what they need while living away from home.  A stroller, a bag of groceries, a hair cut for mom... all of this is done through her budget.  We would like to give back for all she did and continues to do by supporting Candlelighters.

Please go to  https://www.indiegogo.com/projects/shed-the-dreads-and-grow-hope-for-childhood-cancer

Have your debit or ccard ready and it only takes a minute. 
Please help us get this out to the world! Share the link on your social media pages.  Friend me if you haven't already.

If you have any connection to a media contact for the "shave" or to get awareness spread for the cause, let me know!!!

 One love, one heart, let's get together and it will be all right! One of Nick's favorite Bob Marley tunes! Caryn Jim and family

18 people hearted this



Bud West
By Bud West
I will make a note and on next Thursday I will donate. I am trying to manage three e-mails two personal and one college; for some reason CB does not post on g-mail and I forget to come over and check yahoo. I will donate!

In Christ's love,

Bud West
sara varner
By sara varner