My 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. 


Caryn Franca posted a new journal entry, "Perspective".

The Blog has been updated. I am now in the first relapse phase of writing. I had to take a break. Now I am back and ready to LLND.NOTICE:  On Nov. 22 we will host  the ... Read more

Caryn Franca posted a new journal entry, "The Fourth and Freddie".

Blog is updated... book is emerging! So many passages will unfold when it is published that will hopefully offer strength, hope and courage to the world. Here is today's ... Read more

Caryn Franca posted a new journal entry, "A new blog post".

For those of you not on twitter or facebook, here is the link for another entry. I wrote for 4 hours today... a really blessed time.  Sometimes when I am down and sad ... Read more

Pamela Matthews signed Nick's Guestbook.

Remembering Nick today on his three-year anniversary...Praying (still) for you and your family,Pamela Read more

Uncle Ricki signed Nick's Guestbook.

Thanks once again for so humbly reminding us that there is more to our humanity than just surviving the daily grind. The inspiration from Nick's memory should serve to ... Read more

Kathy Brockman signed Nick's Guestbook.

Thanks for the information to follow the blog.  I went back and my "follow" was upper left, but I got it.  I look forward to future posts. Read more

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