Copyright Joliet, IL Patch
A "Shave for Scarlett" takes place Sunday in Southampton, with proceeds benefiting Scarlett and her family. Faith carries her family forward SOUTHAMPTON, NY — The Southampton community is coming together Sunday to open their hearts and help a little girl facing her greatest challenge. Scarlett Parry is just six years old. Earlier this year, she was diagnosed with having medulloblastoma, a rare and aggressive brain tumor, her father John told Patch. A "Shave for Scarlett" event is taking place Sunday from noon to 3 p.m. at the Southampton Fire Department, located at 470 Hampton Road in Southampton. "Join us as we shave our heads to show love and support for Scarlett Parry," organizers said. "A brave fighter battling cancer." A GoFundMe, "Support Scarlett Parry's Battle With Brain Cancer," has also been created. "Scarlett is our sweet 6-year-old girl who was recently diagnosed with medulloblastoma, a rare and aggressive brain tumor," Elizabeth Falkwoski, who organized the page for Scarlett's parents Susan and John, wrote. "Scarlett bravely underwent brain surgery, during which doctors were able to remove most of the tumor. While the surgery was a success, it has left her needing intensive speech, occupational, and physical therapy to regain her strength and skills." She added: "Scarlett's cancer treatment plan includes intensive radiation and chemotherapy treatments, followed by months of recovery and rehabilitation. It's more than any child should have to endure. Scarlett has been incredibly brave and has been facing it all with such determination." And, her family said: "We are doing everything we can to give her the best care possible, but the costs are overwhelming — from medical bills and therapies, to travel expenses for out-of-town medical treatments. We've created this fundraiser to help cover some of the medical costs and unexpected expenses that come with a diagnoses like this. Scarlett is a fighter, and with your help, she can return to the things she loves most, like riding bikes with her twin brother, Easton, and playing on the swings with her sister, Maddie. Whether you can donate or simply share this page, your support means the world to us." The support from the community has lifted Scarlett's family up during their darkest hours. "Thank you for keeping Scarlett in your thoughts and prayers and for standing beside us during this incredibly difficult time. Your kindness, love and support are helping to carry us forward one day at a time," her family said. Speaking with Patch, Scarlett's father John said back in March, he and his wife first learned that something might be wrong. "We were at a parent-teacher conference and the teacher said, 'Scarlett is not really acting like herself. She's hitting children and yelling in their faces.' And we said, 'That doesn't sound like our girl. I don't think we're talking about the same person; she's so sweet,'" he said. At the next parent-teacher conference, the Parrys were told that Scarlett had been going to the rest room, taking wet paper towels, then throwing them and making them stick to the wall. "Again, I said, 'That doesn't sound like my daughter,'" John said. When they asked Scarlett about the paper-towel throwing, John said, "She looked at us in the eyes with a dead stare and said, 'That's not me. Who did that?'" Next, with strep throat raging through their home, and everyone sick, Scarlett was vomiting, as were her siblings; all three were given antibiotics. The other two children eventually recovered, but Scarlett continued to vomit every time she lay down in her bed, her father said. The Parrys, searching for answers, took Scarlett to the pediatrician and various doctors and were given a number of possibilities, including constipation or a bladder infection. "We knew that something wasn't right," John said. Then one night, Scarlett was watching television and covering her left eye. When Susan asked why, Scarlett told her that it was "really blurry." Next, the Parrys thought that maybe Scarlett might need glasses, since her parents and grandparents all had them. Four days later, John said, his beautiful little girl was watching "Bluey," her favorite television show, when she began covering her eye again, and told them that she was seeing black spots. John, a firefighter with the Southampton Fire Department, had lost two very good friends to glioblastoma, brain cancer — and he knew then, with certain dread, that something was very, very wrong. "I said to my wife, 'Get her in the car now. This is neurological.'" They rushed Scarlett to Stony Brook University Hospital, where Scarlett was admitted immediately into the pediatric ER. "My wife started crying," John said. "She said on the way to the hospital, she looked up the symptoms of a brain tumor — and Scarlett had six out of seven. We were just so scared to death." They were told by a doctor that tests were needed. Around 2 a.m., a doctor brought a nurse to stay with Scarlett and told them he needed to speak with them in another room. "My heart dropped into my shoes," John said. "The MRI came back and showed a large mass on the back of her brain." The shock and fear shook the foundations of the Parrys' world, he said. "I cried my eyes out in that room," John said. "I bawled in that room. My wife and I were absolutely devastated. We had to figure out what we were going to do. We felt like our lives were over — this is our little girl." The Parrys were told that they were set to meet the next day with Stony Brook pediatric neurosurgeon Dr. David Chesler. John said he called his parents immediately and his mother told him that she'd sensed that something was wrong. His family, who live in Water Mill, John said, are very spiritual, Catholic with a deep and abiding faith. "She told me, 'I had a feeling. Dad and I are going to get in the car and come to you.'" Dr. Chesler, John was, is "an incredible human being." He told them that the mass was about the size of an apricot and the plan was for a procedure that would drain the area and take pressure away, so that Scarlett's side effects should ease; the procedure was slated to last about 45 minutes. The Parrys learned that their little girl had a brain tumor and that she needed surgery to have the tumor removed; they were told that the surgery was not easy and involved risk, "that she could bleed to death and die on the table," John said. "I was like, 'Oh, my God, please don't tell me that,'" he said. The days were a whirlwind: Scarlett had been admitted to the hospital on June 25, she was diagnosed on June 25, and had surgery on June 26, her parents said. During the surgery, John said, "We were a panicked mess." The doctor came out and told them, thankfully, that Scarlett had done very well during the procedure. "Then he told us that she had medulloblastoma. When he said that, I lost it," John said. They were told by the surgeon that genetic testing of the tumor was needed to inform them about the severity of what they were facing. But he assured that the tumor was genetically-based. "He said, 'Please don't beat yourselves up — there is nothing you could have done. It's genetic.'" After the surgery, radiation was still needed for a small portion of the tumor that had been wrapped around blood vessels in the brain; chemotheraphy was needed, as well, John said. For two weeks after the surgery, their daughter had no use of her left side and wasn't able to speak, he said. "I was just a freaking mess," he said. "This is my baby girl." And then, John said, signs of faith and spirituality began to blossom, imbuing Scarlett's family with hope. He got a message from Fr. Liam McDonald of St. Therese of Lisieux, a Catholic parish in Montauk. "He left a message saying his entire parish was praying for her. Then he said, 'I think the Lord wants me to talk to you and to help your family get through this,'" John said. "He said, 'I have two proven miracles and I want your daughter to be my third. The Lord is bringing me to your family.'" The pair had been connected through another faith leader in Hamptons Bays, John said. For John, the words were a balm; he'd recently converted to Catholicism because he wanted a "more holy" and deeper relationship with God. And now, he believes, "The Lord brought that priest to me." When Fr. McDonald prayed over Scarlett, asking the Holy Spirit to come to her, his daughter kept pointing in the room with her right hand. "My mother asked her, "Did you see Jesus?' and she nodded her head yes.' Fr. McDonald said he believed the Holy Spirit brought Jesus into that room. He said, 'Jesus is here now. He’s in charge.'" There were other instances when prayer offered a guiding light and hope, John said. One time, after prayer, his little girl once again began to speak again — the joyful moment all had been praying for so fervently. One day, Fr. McDonald told John and his family: "I can't really explain my connection with the Lord. I just know that this is a hiccup in Scarlett's life. The Holy Spirit told that that she's going to be fine — she's going to beat this. And she's probably going to grow up to be a veterinarian," he said. John added, awe in his voice: "We all stared at him. All she's ever wanted to be is a veterinarian." The next day, Scarlett's fever, which had been lingering, broke. "It was just absolutely incredible," John said. To date, Scarlett has had three surgeries, as well as radiation; chemo is slated to start Tuesday, a total of nine treatments over 54 weeks, he said. Chris Brenner, public information officer for the Southampton Fire Department, said the many who have wrapped the Parry family in their arms during their journey want, with open hearts, to help. "John and Susan are amazing and little Scarlett is so precious," he said. "We as a fire department family stick together and take care of our own. We will help in any way to get Scarlett the best care she can get," he said. "She is an inspiration. Scarlett, always keep the fight going." Looking ahead, John said: "My wife and I feel pretty confident with what the doctors are telling us. But, as parents, we still have a lot of concerns. Her spinal test came back negative, that there were no cancer cells in her cerebral spinal fluid, which is also a plus." And to the many who are coming together Sunday to shave their heads and share in hope, John said: "We would like to thank everyone for their support and love during this very challenging time. We are going to win this battle together!" To donate to the GoFundMe, click here.
