Spotlight: Michael Orbany

Meet Michael Orbany, a soon-to-be- nine-year-old from Rocky River, Ohio, who has been fighting a valiant battle with cancer since October, 2010. Michael's journey is one of faith, hope, and love, coupled with patience and perseverance, sadness and strength, maturity and melancholy, and honesty and humor, and so much more, that this little "spotlight" will hardly shine one ray on his vibrant personality.
 

Nausea and headaches were his original symptoms which led his mom, Georgianne and father Steve to the ER at Fairview Hospital, a CT scan, and ultimately an ambulance ride to Cleveland Clinic. There an MRI confirmed a 1cm mass in the back of his brain, obstructing spinal fluid flow to his fourth ventricle. His surgery, scheduled for the following morning, removed "all of the tumor," diagnosed as a medulloblastoma, the most common, but also the meanest type of tumor, with regrowth inevitable. 

Just days after surgery, Michael was asking for homework and delighted to be visited by Father Eric, pastor of St. Bernadette's where Michael was a first grader. In addition a visit from Father Rocco, soon-to-be assigned pastor at St. Bernadette's, followed, with Father Rocco telling Michael that he was the first parishioner he would meet from St. Bernadette's. Little Michael lives and loves his faith, as only a child can, with deep devotion and love of his mentors: pastors, both old and new; parents, Georgianne and Steve; teachers, past and present ; and teenage brother, Matthew. While his parents were busy meeting with doctors regarding  the"next step,"  Michael was yearning for home and the Halloween party at school, having made a remarkable recovery from the surgery. His treatment plan included six weeks of radiation, followed by, one month later, the beginning of nine cycles of chemo. Not wanting to miss too much school, Michael's daily radiation treatments were scheduled for the afternoon so that he could attend school every morning. To top that, Michael opted for radiation without sedation --- not recommended by the doctors---, but allowed with an "okay, we'll give it a try," and that they did for all six weeks, with Michael remaining motionless, having contrived many methods of keeping still. 

The new year brought:  the end of radiation; Mom's gradual return to her classroom of girls, and a complete  NED (No Evidence of Disease) MRI. Michael happily rang the "End of Radiation Bell!" and bravely entered his chemo regimen, usually involving, one-to-two overnight hospital stays. During the ensuing chemo cycles which continued throughout the summer, Michael experienced some ups and downs, testing his strength, but proving his persistence and patience, with a great deal of humor on the side. Upon arriving at the chemo clinic for an earlier-than-scheduled chemo treatment, his surprised nurses asked what he was doing there so early. Michael's response: "Can't you see I am on low power and I need some blood!"  The chemo often played havoc on him, and Michael sometimes needed transfusions following the chemo. Surprisingly, Michael knew his own body so well, and acted accordingly.  Michael was repeatedly asked at  each intake: "Are you bringing any valuables?" Finally, he said, "Well, I am valuable!" Humor? Yes! Honesty? Absolutely! 

Chemo involved hair loss, but also hats from his classmates, and a very hairy rescue Shih-Tzu, Rigby, who became Michael's constant companion. Comical Michael could not pass up the "bag of candy blood" he had found at a specialty candy store, and presented it to his chemo nurses amid horror, then much laughter. In mid September, his classmate Lily, who has been saving the coveted KFC prize points for Michael for almost a year, invited friends and families to KFC for "the presentation: a new bike, secured with prize points." KFC obliged with the accessories and free dinners for all, celebrating his September MRI: NED and the end of chemo. 

Second grade was a whirlwind of activity, both making and re-living memories: Christmas holidays, parades, the contents of his memory box (a ZIP LOC baggie of hair, included, accompanied by his  removed mediport), Lent, Easter Break, Matthew's 15th birthday, and his First Holy Communion.  

Unfortunately, the summer of 2012 was not so kind; Michael's cancer had returned --- three tumors on his spine and a cancerous material on the covering of his brain. First Phase of Round 2 of chemo would begin following Michael's and his family's very memorable Make-A-Wish trip to Disneyworld and a visit to Nana, in Florida who could no longer travel. His prayer warriors were back at it --- a prayer service at St. Bernadette's, a friend's visit for Michael to St. Gobnait's Shrine in Ireland,  and a healing blanket from Medjugorje ,  --- all of part of the warrior brigade. Throughout   Round 2 Michael continued to be honored and supported by friends and strangers alike, including Matthew's classmates at St. Edward's, Theo, a new chemo patient, Faith, his friend from Minnesota, (yes, her name is  really 'Faith,' ) participating  in the Miracles of Mitch Foundation's triathlon in Michael's honor,  St. Mark's , the school where his mother once taught and his Aunt Jan now teaches, the Superheroes of Ohio, and the Miracles4Michael Fundraiser, courtesy of the efforts of Mo Loesch, to name only a few;  each a story in itself. 

The love, support, and prayers, however, did not change the report:  Chemo: ongoing; Tumors: stable. Time for alternatives because "stable" was not a good report. A  December visit to Boston to Newman-Lakka Institute For Personalized Cancer and Floating Hospital For Children at Tufts Medical Center for a complete study of Michael's tissue to determine the best possible chemo. Michael's request to doctors in Boston, after first asking Mom if he could use a dirty word, "Take this shi_____ cancer away!"  The studies and testing began.  A March 28th CT scan, ordered after recurring headaches, revealed swollen ventricles, indicating cerebrospinal fluid being trapped, warranting a ventriculosity (making a hole in the brain to establish flow of fluid) and the placing of a shunt, temporarily turned off,  to drain fluid.  

The new chemo drugs were being given on a stop and start basis, depending on  his platelet counts. Steroids were given to reduce swelling. Meeting with doctors trying to determine the next treatment as Michael's tumor progression continues.  Another round of radiation was ordered on May 15; two seizures on May 18 sent Michael to Fairview, then on to Cleveland Clinic. The demons were returning, fast and furious, the probable cause, as there was no bleeding on the brain.

Back home in time for his pre-birthday celebration at St. Bernadette's on May 28; it's a must see and provides on film the continued outpouring of support for Michael. Check it out here.

For the entire and very real story of FAITH, HOPE, AND LOVE visit Michael's website and his Facebook page, Miracles for Michael. 

SFSF is proud to have provided the Orbanys with a family grant in May and reiterates for Michael: "NEGU, (Never Ever Give Up)!"

TCSN's (The Cure Starts Now) DIPG Collaborative, of which SFSF is a sponsoring member, met again on May 2-4, 2013, at Cincinnati Children's Hospital. SFSF's founders, Marc and Emily Quayle, were among those in attendance.  With over 90 of the world's leading cancer experts, researchers, and foundations from five countries, the DIPG Collaborative gathered for the second "homerun cure" pediatric brain cancer symposium in the U.S.  Together, nearly $1.1 million was pledged for new research through a collaborative network in the U.S., Europe, Canada and Australia. The revolutionary collaborative meeting showcased both the best and most innovative cancer research proposed worldwide and featured innovative, groundbreaking research. The first of its kind within the U.S., it represents not only a collaborative educational seminar, but a series of symposiums that will also seek to advance cancer strategies in a multi-disciplinary manner with the support of foundational funding garnered from the nearly 25+ foundations and families that attended this meeting.

SFSF St. Jude Marathon Weekend Team forming 

The SFSF St. Jude Marathon Team is now at 16 members, the largest team to date, and still has room for more. With a May 31 cut-off date for registering as Gold Heroes, several team members are  committed to raising a minimum of $2500, guaranteeing them, not only  two-night hotel rooms, but also paid registration fees, tickets to the Friday night pasta dinner, entrance to the Race Day Heroes Lounge, and  St. Jude incentive gifts, as well.  Committing to the Gold Hero status are Emily Quayle, SFSF Team Captain and 6th year participant, Amy Wilson, returning for the 3rd time, Kathy Farquhar and Jennifer Slater, 2nd year participants, and Andrea LaForce-Bergenser and Misty Karn, on their maiden voyages at St. Jude.  

Registered Gold Heroes willingly share their room accommodations with team members, who are all also registered as St. Jude Heroes (at varying levels), and whose goal is to raise $1000 each in order to secure the various incentives listed above. 

This year's SFSF team includes veteran runners: Emily Quayle, Jennifer Slater, and Amy Wilson (26.2); Kathy Farquhar, Elizabeth Rolinski, Sarah Smith, and Trent Wilson (13.1); and Susie Miklaski (5K); and newcomers: Nina Stanossek (26.2), Andrea LaForce-Bergenser, Kelly Bova and Lauren Hicks (13.1), and Brad Farquhar, Doug and Misty Karn, and Adam Rolinski (5K).

To make a donation to St. Jude in support of Team SFSF, visit their fundraising page and please share it with all your friends!