Melanie

In February of 2002, Melanie Fay was diagnosed with Retinoblastoma at only nine months old. After her diagnosis, for nearly three years, she underwent various treatments including the removal of her right eye to fight the cancer.

With the grace of God, Melanie went nine years cancer-free, adjusting well to having sight in only one eye. In the summer of 2013, life could not have been more blissful when the family welcomed another baby into the world. However, the happiness came to a screeching halt when Melanie was diagnosed with a secondary cancer, Osteosarcoma.

For two years, Melanie fought bravely against this aggressive form of the disease. In order to save her life, she underwent surgery to remove her left eye, now causing her to become completely blind. For her family, it was one of the hardest experiences they had to endure. Along with Melanie, their world went dark. Yet, through the darkness, their strength returned as Melanie’s fighting spirit triumphed as she adjusted to her new life. She learned to read Braille and how to walk with a cane. Along with her teachers, she learned how to become an independent, blind teenager.

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Melanie worked very hard to be accepted into the program of MIRA, USA. This program required Melanie to be independent in using her white cane to navigate around, and to be able to cross the street safely. After many hours of hard work practicing walking, crossing the street, carefully listening to traffic and feeling confident in doing so, she was accepted into the program. It was a very happy time for Melanie and her family.

In the summer of 2014, Melanie traveled to Montreal after a long month of training; she reached her goal, and was the recipient of her very own guide dog, Baza. 

Through it all, Melanie continued to enjoy life as much as she could. Even when she was terminal, her smile could brighten up a whole room. This young warrior taught her family what life is really about, keep trying, enjoy every single moment and never give up.

On October 29, 2015, Melanie Fay, passed away from Metastatic Osteosarcoma at the age of 14. Melanie left her family with the beautiful wisdom of an old soul, "Sometimes you have to make a legacy to end a story.” 

This is her legacy. 

Jedidiah

Jedidiah was born December 23rd—the greatest Christmas gift his dad, mom, or big sister would ever receive. He was an easy, happy baby and little boy. As he grew, he was hungry to try everything; wanted to try every sport, did theatre, played drums, volunteered in school and his community, loved snowboarding, Disney, and fishing, and especially loved his family. Eventually, he became a lifeguard, Eagle Scout, captain of the swim team and his plan after graduating high school was to join the Coast Guard and train for search and rescue. Jed was everyone’s friend, was known for his kindness and—oh!—what a goofball he was! His greatest joy was making people laugh!

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Three weeks after graduating high school, we learned that Jed had a football sized tumor in his chest—sarcoma.

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Jed endured 8 months of treatment with chemo and radiation. He had surgery on April 6, 2015 at Sloan Kettering in NYC. The surgery was declared “miraculously successful” and we were told “this kid has years of life ahead of him.”

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Sadly… that is not how Jed’s story ends. He died just 46 hours after surgery from heart failure  caused by chemo and radiation—the “treatment.” It was the same treatment offered 50 years ago… because there are no new options for sarcoma and most pediatric cancers.

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We share Jed with you tonight in the hope that he continues to do good. That his life… and death help bring about change for future kids. The boy with the biggest heart would want that.

Jonathan

 Jonathan was always the healthiest of his siblings, so when he developed a limp in June 2013 that lasted more than a week, it prompted his mother to take him to the doctor.

As the doctor examined him, she became concerned when the source of his pain was isolated in the sciatic area. Immediately, Jonathan was scheduled for an x-ray, and by the end of that day, was sitting in an oncology clinic.

Within a week’s time, after a whirlwind round of extensive medical testing, Jonathan was diagnosed with Ewing's sarcoma, localized in his pelvis. Though the grim diagnosis, the family was hopeful.  They were told that they had caught it early, and with surgery and/or radiation, they should be able to eliminate it.

Soon after his diagnosis, Jonathan began six preliminary rounds of chemotherapy. Despite his terrible nausea, his counts recovered well each time, and he was able to stay relatively on schedule. Once he completed his rounds of chemo, scans were done in preparation for surgery. Unfortunately, the scans showed more spots, and a biopsy confirmed they were also Ewing's.

At this point, surgery was no longer an option. He was switched to an alternative chemotherapy, and had thirty-one sessions of radiation along with it. In October 2014, he completed chemo, and all the lesions were stable. In an attempt to return to normal life, Jonathan returned to school on a part time basis. At the time, Jonathan and his family thought they had three months before he was required to do more scans, but, as it turned out, it was just 3 weeks.

In that short amount of time, Jonathan was complaining of pain in his clavicle. They wanted to believe it was caused by playing in the band again, or carrying his backpack after so much time away - anything but cancer! Unfortunately, that was not the case, and the scans came back showing more tumors. This time, local treatment was not an option.

They traveled to Charlotte, North Carolina, to meet with the “Ewing's Sarcoma Guru,” Dr. Anderson, at the Levine Children's Hospital. He spoke about an oral chemotherapy option that Jonathan could take for the rest of his life, if it could stabilize the disease. He also spoke about a new proton radiation center that had recently opened near their home. Within a week, Jonathan was seen at the proton radiation center, and his treatment was prioritized. By the following week, he started his new treatment plan.

By the time treatment started, the tumor at the base of his skull had caused his face to droop as if he had had a stroke. He also had a lemon size tumor on his left side. The radiation worked better than expected, and he recovered enough to go on his long awaited “Make a Wish” trip to visit family in Mexico, and spend a week in Cancun. However, his energy levels didn't recover the way they had in the past, and he chose to use a wheelchair throughout the stay.

Upon return, Jonathan had developed a cough that was so violent it would cause him to throw-up. He was taken to the hospital where he was admitted to the ICU with fluid on his lungs. He was inpatient for 10 days when the family suffered another devastating blow. Dr. Anderson, unexpectedly resigned, leaving the family feeling deserted and hopeless.

During his hospital stay, Jonathan did show some improvement which caused some confusion as to why the medical staff continued to talk about hospice care. It was then that his most recent scans revealed the cancer had spread everywhere except for his head, and from the knees down. He was enrolled in hospice and brought home.

Jonathan didn't want to die in the hospital, and his family could not bear the thought of him passing away at home. In the end, he picked an in between place, the oncology clinic. On February 3, 2015, Jonathan passed away relatively peacefully while awaiting hospital admission. He was 15 years old. Jonathan bravely fought against the disease for 19 months. As of February 2017, he has been gone as long as he fought. It is his family’s hope that someday, there will be no one who has a similar story about Ewing's.

Billy 

Billy Cicio was a rock of loyalty and honor in a world full of pain and discontent.  He was a lover of life, of family, of friends, and of justice. He was especially a lover of justice, which is why his painful, untimely death is so tragic. It's not simply “who he would become ….” It’s who he already was.

Billy was the first of my three beloved children. He was the first to send my heart to a euphoric level of joy and happiness. When I held him in my arms for the first time, and I looked into his alert eyes, I realized I loved him so much he could break my heart. I promised to protect him until I died. At Thanksgiving break when Billy was only eighteen, the worst nightmare happened: Billy was diagnosed with Ewing’s Sarcoma.

If ever a baby was sunny and vibrant, Billy was it. Wise beyond his years, he had the gift of empathy. He was intelligent, intuitive, and mature from the start. He was also compassionate. Even as a toddler, if someone was sitting alone, Billy would see to it that they soon had a companion: clever and witty as he was, he diverted others’ loneliness and made them laugh. 

He had one of those real laughs, a contagious laugh, a laugh that made people around him think he was always jovial, but that’s not so. Billy was a serious thinker and an ardent pursuer of truth.

Billy selected his battles with care. In a 2012 essay for the National Honor Society, he wrote, “If I believe in something, I will battle for it, and I won't stop trying. I regret very little of what I've done in the past. It is rare that I make a decision I can't be proud of.” What Billy did fight was injustice. Billy stepped in whenever he saw injustice, from the playground bully to the arbitrary teacher. Billy fought for justice, honor, family, and friends. He wrote, “My love of family is matched by nothing else.”

He was also patriotic. No one could remember Billy without remembering that he loved his country. He wrote, “It is important to me to be proud of what I do and have honor in what I do. I want to work for the betterment of my country.”

Without even trying, Billy did make people feel safe. Billy’s friendships were not ordinary: they were deep, pervasive, all-encompassing expressions of joy. His friends, siblings, and cousins looked up to him because he was loyal, honorable, and merry.

His siblings, Alyssa and Ryan, who knew Billy’s love best of all, were there until the bitter end. Billy’s love for them was instrumental in forming the strong young adults they are today. For their sake, Billy “did not go gentle into that good night.” The three of them were lifetime playmates, confidants, and friends. They watched TV, played video games, and rode through the woods in Billy’s jeep. Billy was the big protector, especially when Alyssa started to date. Ryan and Alyssa watched their 6’2” brother transform into a ninety pound skeleton riddled with pain. Though he tried to mask his excruciating pain, they witnessed his humiliation and struggled to help him.

With Ewing’s came a series of gruesome infections, smells, seeping and weeping wounds, and weakness that no children should endure. Alyssa and Ryan yearned for the Billy who loved to linger after dinner, to laugh and be with his family. They longed to alleviate his agony and revive his spirit, but instead, Ewing’s made them witness his torment. Try as they might, this was a storm they could not weather.

In his short life, Billy accomplished a lot. He was captain of the kayaking team and the boat building team. He played the guitar in the band. He was fun and funny for as long as he could be. Ewing’s, the persecutor, destroyed both him and his family. His aunt, Christine, was invaluable near the end. She travelled to us weekly in spite of a busy life, and Billy loved her like a second mother. Billy was a creator, not a destroyer. Billy built boats. He took fundamental materials—wood, metal, glue—and lovingly formed them into honest, practical boats.

Billy Cicio earned his life. Now, all that is left is love.

                                                                                                ~ Susan Cicio, September 2017