Help Steven Fight his Rare Tumor

I’m writing this to try to help my 29-year old nephew, Steven Marino, to gather funds to help pay for travel and medical bills at Memorial Sloan Kettering in New York, to treat the rare tumor in his back.

Steven’s Story:  Steve married my niece Lindsay in June, 2015, after proposing to her during an exercise class he was teaching (and she was attending) in February of the same year.  Prior to early 2015, Steven was living a pretty normal life -  he had graduated from CSUS with a Bachelors in Kinesiology a few years before and was working as a personal trainer at California Family Fitness in Sacramento, where he met Lindsay.  Shortly after they met and fell in love, Steven was diagnosed with an extremley rare tumor (Juvenile Trabecular Ossifying Fibroma-JTOF) in his spine.  He underwent his first successful surgery in March of 2015 and proudly walked down the aisle (while wearing a back brace) to marry Lindsay in June of that year.  They welcomed their beautiful daughter, Hailey Jule, on October 4th, and things were good… for a while. 

In January of 2017, Steven experienced severe back pain, and was shocked to learn that the tumor had returned agressively (previously he had been told that was less than a 5% chance  of recurrence).  Upon further tests it became apparent that the tumor was growing fast and had completely subsumed his sacrum (tail-bone).  A second, and then a third surgery were performed during the spring and summer of 2017, both seemingly successful. In August of 2017 Steve again started severe pain and an MRI revealed that in the 6 weeks since the last surgery the tumor grew aggressively – to the size of a football. An American football (!). Radiation was started but the tumor continues to grow as of October 2017, and Steven is now in a wheelchair with severe pain and very limited lower body mobility due to pressure on his nerves.

What’s Next:  It’s possible there is one more surgery in Steven’s future – the good news is that it will hopefully remove the tumor for good.  The bad news is that it would result in total paralysis below the waist and loss of all neurological function (bladder/bowel/reproductive).  So for now, that surgery is a last resort.  Steve and Lindsay are currently looking for help to travel to Memorial Sloan Kettering hospital in New York, which specializes in rare cancers and has one of the few doctors in the world that have ever worked this type of tumor.  There they will help him understand his options and possibly – hopefully – enroll him in a late stage clinical trial and/or recommend a course of non-surgical treatment.  The problem is -- staying in and traveling to Manhattan isn’t cheap.  And regardless of what happens, Lindsay has quit her job as a flight attendant for Virgin Airlines to care for Steven full time.  Steven and his family are living off of state disability while trying to juggle living costs, doctors bills, travel costs to and from the doctor, as well as the cost of insurance payments.  Time is of the essence at this point and finding an alternative treatment now is critical.
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Organizer and beneficiary

Jennifer Wheaton Juneau 
Organizer
Walnut Creek, CA
Steven Marino 
Beneficiary
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