Sal's Story
See an interview about Sal & the Mystic Force Foundation by clicking here:
March 19, 2011 After a very long and torturous 3 1/2 years fighting this disease, Sal lost his battle with Neuroblastoma cancer. He passed away in the arms of his parents surrounded by family and friends.
February 2011 Scans show rapid progression of disease. Sal is transferred via ambulance from Miami Childrens Hospital to Jackson Memorial's Holtz Childrens Hospital PICU. He is undergoing a very experimental treatment in the hopes of saving him.
January 11, 2011 Sal is hospitalized at Miami Childrens Hospital with severe pain.
Jan 2011 Scans show progression in the liver, taken off the ATOMIC trial, awaiting start of Jennerex Trial March 1, 2011
9/2010 - 1/2011 Phase I trial of ATOMIC Vaccine
8/2010 After near fatal side effects from the BSO/Melphalam, scans show stable disease with slight improvement.
6/2010 After a 5 high dose chemo combination scans continue to be stable.
5/2010 After high dose ICE chemotherapy scans show stable disease.
4/12/2010
Scans were under read in Minnesota and actually show further
progression. At the present time Sal is undergoing ICE chemotherapy (the
strongest & harshest of the
chemotherapy agents) at Sloan Kettering Cancer Center in New York
City. Please see Sal's website for further updates.
March 2010 Scans again show further progression. Entered a new Phase I Trial of the *Seneca Valley Virus
in Minnesota. Sal is the first child in the world to have this new
virus infusion. The theory is the virus replicates in his body and kills
the neuroblastoma cells. Sal must remain in Minnesota for 28 days until
his body clears the virus and he undergoes disease reevaluation mibg
scan.
1/2010
After 2 cycles of hi dose chemotherapy scans show further progression
with a new lesion found on his skull. Continuing on a new combination of
hi dose chemo.
November 2009 Scans show further progression. ALK Inhibitor trial is suspended. Starting High dose chemotherapy.
September 2009
Scans show new areas of progression. Aurora A Kinase trial is
suspended. Surgical removal of lymphnodes were found to be positive for
Neuroblastoma. Another Phase I study of a new experimental drug, an ALK
Inhibitor was started.
August 2009 Scans show improvement and bone marrow biopsies are negative. Continue on Aurora A Kinase trial. Will rescan in 6 weeks.
June 2009 Scans show further progression. Removed from ABT751 study. Started new Phase I Trial of Aurora A Kinase Inhibitor.
April 2009 Scans continue to show progression and bone marrow biopsies are positive. A Phase II Clinical Trial of ABT751 was started.
February 2009 Scans
and bone marrow biopsies showed continued progression of his disease.
He is currently undergoing I131MIBG Therapy at Childrens Hospital of
Philadelphia.
1/20/2009 At
the present time Sal is undergoing another round of high dose
chemotherapy and an additional 20 rounds of radiation to the right
femur. He was found to have relapsed on his most recent scans and bone
marrow biopsies. Future treatment is dependent on the results of
upcoming scans & biopsies.
On September 10, 2007 at the age of 4 1/2 Salvatore was diagnosed with Stage IV Neuroblastoma, a very rare and aggressive cancer that primarily affects children under the age of five. In the past 2 years Sal has undergone 8 surgeries, the main surgery to remove the tumor was over 12 hours. 14 rounds of very intense high dose chemotherapy, and an additional round of low dose chemo in combination with radiation to the abdomen, which was the original tumor site. He has had nephrostomy tubes placed and removed, kidney stents placed and removed, a mediport placed in his chest, surgery to remove a new tumor after his 6th cycle of chemo, and most recently, surgery to the neck where there was concern of new tumor growth. He has had 50 rounds of radiation to the left leg and abdomen, two stem cell collections, dozens of bone marrow biopsies & scans, and countless numbers of blood and platelet transfusions. He has had more than 275 days of inpatient hospital stays. He completed a total of 7 cycles of a very painful experimental 3f8 antibody treatment before he developed HAMA. A Radioactive I131 MIBG Therapy was done in February 2009. A Phase II trial of ABT751 was started in April 2009, scans showed progression of his disease and the ABT751 was stopped. A Phase I trial of Aura A Kinase Inhibitor was started in July 2009. SEE ABOVE FOR FURTHER UPDATES
Sal must be rescanned and have bone marrow biopsies repeated frequently due to the high recurrence rate of this disease.
Diagnosis was made September 10, on September 12, Sal, Mom & Dad packed up and flew to New York City to the Memorial Sloan Kettering Cancer Center where he received the first 18 months of treatment. Sal has three brothers and a sister, Steven 18, Adrian 12, Samantha 11, and Sergio 9. It was very difficult for us to leave all our other children behind, but after very quick research and recommendations from Steven's colleagues we decided that Memorial Sloan Kettering, under the direction of oncologists Dr. Brian Kushner, Dr. Kim Kramer, Dr. Shakeel Modak, & Dr. Naong Cheung, & surgeon Dr. Michael Laquaglia, was the best decision for Sal. In February of 2009 after a 2nd relapse we made a decision to have I131 MIBG Therapy at Childrens Hospital of Philadelphia under the care of Dr. Maris. We continued with his care there with the ABT751, the Aurora A Kinase Inhibitor, the ALK Inhibitor, and the BSO/Melphalan. Sal was also treated at the University of Minnesota with the Seneca Valley Virus. Unfortunately, his disease continued to progress. He is received the ATOMIC Vaccine in Houston, Texas under Dr. Crystal Louis and here at home at Miami Childrens Hospital under the expert care of Dr. Guillermo DeAngulo.
During all of his treatments and everything he has been thru, Sal insists he is fine.....(rarely will you see him without a smile on his face) but after all, he is the Blue Power Ranger! He does not realize that he has spent the last 3 years fighting for his life. Sal is the smartest, funniest, strongest, most courageous and loving 7 year old boy, he is truly our Superhero.
We founded the Mystic Force Foundation in an effort to find a cure for Sal & all the other children afflicted with this very painful & aggressive disease. This foundation will fund research to find a cure for Neuroblastoma and other aggressive pediatric cancers. Pediatric cancer research, especially for such a rare type of cancer, is severely underfunded and researchers must rely heavily on donations and grants from public entities. 100% of money donated to the Mystic Force Foundation goes to research to find a cure for this very life threatening & aggressive disease.
We appreciate your donations & support in our effort to find a cure.
Steven & Silvia Vanni
You may visit Sal's website by clicking here:
