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.
One Love Wednesday May
1..... To remember Nick and his amazing spirit on this day that he left
earth... If you are on facebook, (or maybe could just join so you can access Nick's Tribute page), you can join in. Type in his tribute page Live Like Nick Did LLND. Then "Like" his page and then "share" the page with your friends. For
those of you that don't know how to "like" a page, you just go to it and click the like button. Then anytime someone posts an LLND moment you will receive the it in your "newsfeed". Ask others to join you in a "One Love Wednesday" ... He
loved that Bob Marley song. To join in the chain of love, simply do ONE
small act to go out of your way tomorrow.... as small as a smile, as big as
paying someone's tab, to giving blood. After you do your LLND act, Then... make an entry on His Live Like Nick Did page... keep it "alive" by making a post of what you did. Can we get at least 23 (his age)
entries tomorrow, and the likes to 100?let's do it!
If you absolutely can't do facebook then make you entry here in the guestbook after you "act of LLND".. I will cut and paste them into fb..
Thank you for helping us through our grief this week... Caryn