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Salvatore’s Story

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On September 10, 2007 Salvatore was diagnosed with Stage IV  Neuroblastoma , a very rare kind of cancer that mainly affects children under the age of 5. On September 12th, still in shock and overcome with grief, we left our four other children behind with family members and flew to New York City to Sloan Kettering Cancer Center to meet with the doctors whom we were told were the best in the world for treating Neuroblastoma. Sal had a massive tumor filling his abdomen which was also wrapped around his aorta. We were told the cancer had also metastasized to his bone marrow. We were not given very good odds. Since that date Sal has undergone 8 surgeries, the main surgery to remove the tumor was over 12 hours, 14 cycles of very intense high dose chemotherapy, 10 cycles of low dose chemos, nephrostomy tubes placed & removed, kidney stents inserted and removed and 50 rounds of radiation to both legs and abdomen. He's had countless numbers of blood tests, bone marrow biopsies, nuclear scans and blood & platelet transfusions. Sal has also had over 220 days of inpatient hospital stays. He received 8 cycles of an excruciatingly painful, experimental 3f8 antibody therapy in the hopes of clearing his bone marrow. On August 4th, 2008 he was officially declared NED (no Evidence of Disease) On December 31, 2008 results of scans & bone marrow biopsies revealed positive findings which indicated that his disease was progressing. January 15th he again started high dose chemotherapy. February 2010 a decision was made to undergo I131MIBG therapy (being infused with highly radioactive iodine) at Childrens Hospital of Philadelphia under the care of Dr. John Maris. He was then enrolled in a Phase I study of ABT 751 on which he progressed after 1 cycle, he was then enrolled in a Phase I study of Aurora Kinase and was found to have progressed after 3 cycles and underwent surgery to remove lymphnodes in the groin which were found to be positive for NB. He was then enrolled in a Phase I study of an ALK Inhibitor and was the first child in the world to take this new drug on the pediatric trial, unfortunately he continued to progress on this drug and started hi dose chemo again. March 2010 a Phase I trial of the Seneca Valley Virus opened in Minnesota and Sal was also the first child in the world to undergo this new treatment. Unfortunately Sal continued to progress with the SVV and went on to do 2 rounds of ultra hi dose chemo in NY. Summer 2010 a trial of BSO/LPAM nearly took his life. Oct 2010 he was the first child to undergo the ATOMIC vaccine trial which showed improvement in boney disease but unfortunately after 6 injections scans showed soft tissue progression. Currently he is awaiting the start of the Jennerex virus trial.

At this time there is no cure for Neuroblastoma. We MUST find a cure for Sal & all the other children afflicted with this horrendous disease. For this reason we have founded, in Sal's honor, The Mystic Force Foundation. This foundation will fund research to find a cure for neuroblastoma with the research being conducted at various institutions around the country, among them the University of Miami where we have a dedicated Neuroblastoma lab. Donations are 100% tax deductible.

Our lives are dedicated to finding a cure for our son & all the other NB kids. Steven & Silvia Vanni

Thank You & GOD Bless You

You can view a video of Sal's journey thru Neuroblastoma during the past 2 years @: www.youtube.com/NeuroblastomaWarrior 

Click Here To See Sal's News Article on NBC (if you click on the small picture to the left of the article you can watch the full broadcast.)

Latest Journal Update

Untitled

"Hope is what cancer parents live on. We live on the hope for the next
new trial, next new treatment. We live for the hope that our child will
be cured from cancer one day."              
 Silvia Vanni

Read more: http://www.wsvn.com/features/articles/medicalreports/MI96075/#ixzz2VUq62XRG




Hello my Friends,














































































































































Last month I met a beautiful young teenage girl that is
fighting Childhood Cancer.



























A week later I was put in touch with a mom who’s 19 month
old son had just been diagnosed with Childhood Cancer. The following day she
lay in one hospital giving birth to twins while her baby lay in another
hospital undergoing his first cycle of chemotherapy.




























The following week a friend called to tell me his cousin’s
daughter was just diagnosed with Childhood Cancer and could he pass along my
info because she needed help.




























And in the last month 8 children I know have died from
Childhood Cancer.




























 




























And they say Childhood Cancer is rare??? Really???




























 




























Childhood Cancer continues to be the leading cause of death
by disease in children. More than Asthma, Diabetes, Cystic Fibrosis and
Pediatric HIV/AIDS combined.




























 




























I am writing to you now, as I do every year, to ask for your
support. People ask me why I still do this. “Your baby died, you can’t bring
him back, why do you continue this fight?
“ they ask. It’s simple, I’ve been
there, I’ve seen how these kids are tortured, I’ve felt the agony of watching
my baby suffer and cry out for help, unable to do anything to help him or relieve him of
his pain.  I personally know the devastation that is Childhood Cancer. I have made it my mission to
save every child I can. To keep every child from going through what my precious baby
did, to keep every parent from feeling the unending pain of losing a child to
such a vicious disease.




























 




























I hope each and every one of you will join me in my mission.




























 




























This Sunday June 9th we will be holding our 5th
annual Walk For A Cure at Oleta River State Park in North Miami Beach. We will
also be adding Cycle of Hope an approximately 60 & 30 mile bike ride from
Oleta down to South Beach and back, led by our local police, including SAG support by BikeTech. It will
be a fun filled day of bouncehouses, cotton candy, popcorn, face painting and
more. Have breakfast sponsored by Offerdahls and Nestle. Join us for a barbque after the Ride & Walk including delicious
hotdogs from National Deli, amazing chicken wings from Sports Grill, McDonald's burgers, and
refreshments provided by Coca Cola. Visit our vendor booths for samples from
Zico Coconut Water, chips & salsa from Lime Mexican Grill, bars from Kind Healthy Snacks, snacks from
Costco and Free bike helmets for the first 75 kids provided by the Epilepsy Foundation. Visit our Candy Bar, meet
Stanley the Florida Panthers mascot, give blood in the mobile blood unit, enjoy
the music from Rock with U Entertainment, meet some of the Miami Heat Dancers and so much more. All of this for only
$25 per person, under 12 are free with paying adult. 100% of your donation goes directly to Childhood
Cancer Research.




























 




























Join in on our raffles for spectacular prizes such as a
large flat screen T.V., Apple iPod, Turnberry Golf for 4, Turnberry
Spa package worth $240, Designer Sunglasses, Invicta Watches, Waterford Crystal and so much more!




























 




























If you can’t attend and still want to help these kids
battling this devastating disease just donate online @  www.MysticForceFoundation.com/Donations.html
 



























Get your team together! Start an office collection (remember
many companies have matching gift donations!!!), Walk or Ride in memory or
honor of a loved one! Or just join in on the festivities!!! But definitely
remember we need your help, the only thing keeping us from finding a cure is
research and research needs funding.

305.726.1155 or 305.726.7306 for more information




























 




























My love to all of you who have followed our journey for so
long and to those of you who are new to our devastating plight. Thank you for helping me give Hope to all children with cancer and their parents.


























Silvia