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My 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.)

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Silvia Vanni posted a new journal entry.

"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 ... Read more

Silvia Vanni posted a new journal entry.

"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 ... Read more

Silvia Vanni posted a new journal entry.

My dear family & friends, It's been a long time since I've written on caringbridge. I've been putting my thoughts and writings on my new blog as this page was ... Read more

Silvia Vanni posted a new journal entry.

Click below for those who wish to read my new journal entry towww.WakingUpWithaBrokenHeart.comWe should all follow Sal's example and live every day like it is your ... Read more

Silvia Vanni posted a new journal entry.

HOPE Hope is what Cancer parents survive on. Hope for new medicines, Hope for new trials,  Hope that their child will one day be cured of cancer. Silvia ... Read more

Silvia Vanni posted a new journal entry.

5 years ago today Steven and I stood in a tiny little room at the hospital and were told our baby had a very aggressive form of Childhood Cancer called Neuroblastoma. I ... Read more

Silvia Vanni posted a new journal entry.

Hello my dear friends and family, I hope this finds you and your families well.  I haven’t written since before Sal’s birthday in April so I thought I would just let ... Read more

Silvia Vanni posted a new journal entry.

This Sunday April 22nd would have been my precious baby's 9th birthday. Never in a million years would I have thought one of my children would not live to see their ... Read more

Silvia Vanni posted a new journal entry, "One Year".

Tomorrow marks one year since my precious amazing baby was taken from me. One year of sheer torture. I have yet to find any peace, any solace, any acceptance of this ... Read more

Silvia Vanni posted a new journal entry, "Chapters...........".

Someday I will now the meaning of life………. Someday I will know why my baby had to suffer so…….. Someday I will know why GOD felt the need to take my ... Read more

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