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Charity

    Tyson Peacock was diagnosed with Acute Lymphoblastic Leukemia and underwent nearly 6 years of chemo. Tyson’s been cancer free since 2009 and his mom, Elizabeth, tells us even though he was going thorough chemo, he would wake up every day happy.  “He would get his little iPod and he had this bear that played the music and he would sing and dance for all the nurses, and so here’s this kid who has to go through all of this and there’s some days he feels absolutely horrible, but he gets up and he does it.” Elizabeth says.  She says on his last scheduled hospital visit he cried because Tyson wasn’t going to be able to go back there again.  Tyson says when he was in the hospital, he was able to have fun, and there was one person in particular who was influential in his journey: Miss Joli.  “Its something about her personality and the way that she is and the way that she interacts with everybody. Not just the children, but the parents too that regardless of what is happening or how you feel, she can just walk in the room and talk to you or you can walk in to the clinic and see her and she instantly makes you feel happy.” Elizabeth says.  She says having someone like Miss Joli around makes a big difference.  “We’re not just sitting there in our beds like people think, were not, yes there’s pain but were not acting like it we’re having fun and everything and with the donation we’re actually, we’ll be able to have more fun and with all this we will get through it.” Tyson says. Tyson says if it wasn’t for having cancer, and going though all the experiences he’s gone through, he wouldn’t be the person he is today.
  • “I think he’s been pretty lucky,” Zane mom says as she reflects on the months-long journey they had to go through as a family as Zane battles cancer.  She says Zane was normal for the most part, but he kept getting different types of respiratory infections.  “We had begged our doctor to let us see a specialist and they finally did. And the day before he came up to us and was like, ‘what is this?’ and there was a lump coming out the side of his stomach.” That’s when their lives changed, the tests started and then they found it…Wilms Tumor stage three. Zane’s family says there were times when things were difficult but thanks having an amazing support system who they were able to reach out to in times of need.  “There are a lot of days where its just rough. Just make sure that you have a good support system and there’s families here that would be happy to reach out to you.” Zane had surgery not too long after his diagnosis and then went on to undergoing chemotherapy and radiation. He did have some side effects from the radiation like nausea, but his family says he has been doing fairly well. His family says they can see the finish line because Zane is almost done with chemo now.   Zane says he’s feeling good especially after having a good port access and says he’s looking forward to being both a scuba diver and police officer when he grows up. 
  • Bryce Williams’ battle with cancer started when he was just 8-years-old. “I fell off a chair and I hit my knee, and it hurt way more than it needed to. And that happens with a lot of cancer patients, they break a bone or sprain something, and it will start hurting way more than it needed to. Luckily, I didn't break anything, I just fell on the ground. But it really hurt, and we went to go to my regular doctor just to check it out. He touched it, and I screamed in pain,” he says.  Initially, he was diagnosed with a benign tumor.  “We didn't really exactly feel like we trusted it, and so we went to get a second opinion, and it was cancerous,” he says.  At such a young age, Bryce says he didn’t really grasp what was happening. He remembers a lot of sitting, a lot of waiting, and a lot of pain.  “You don’t really want to move, you just feel terrible, because they’re just pumping poison in your body,” he says.  And when he didn’t feel pain, he felt nothing.  “You don’t really feel anything. You just sit there, and you're so sick, you just don’t feel anything. It’s like a coma, but you’re awake,” Bryce says.  He leaned on faith and family to get through this time, especially when he learned he would have to have his leg amputated as part of his treatment.  'We sat down there and just told- him I know this sucks, you know this is horrible, and we love you,” says Bryce’s father, Shane.  But even with that, it took one more key player to keep him going- Ms. Joli.  “Burst through the door- ‘Oh hey, Bryce! How you doing? What’s up!’ Then she’ll hug me, and then we’ll start talking, and do some arts and crafts, go mess with me sister, stuff like that,” Bryce says.  He says Ms. Joli would always be there for him to talk to, and helped him somehow forget what was happening through everything.  “Happy, cheerful, amazing, super duper cool- any words that you would think of being cool is what Ms. Joli is,” he says.  Bryce is now 17-years-old, and has been post-treatment for six years. He enjoys playing soccer, swimming, and strumming on his ukulele. Despite what he has gone through, he says he’s optimistic about what the future holds.
  • John and Liz Schiefen first started noticing issues before the diagnosis came. It was 2003 and their 9-year-old daughter, Kelsey, was limping on one leg and had problems controlling her bladder.  Doctors performed all kinds of tests. Finally, an MRI was performed at Nemours Children’s Specialty Care.  “At that point they found a very large tumor, about the size of a grapefruit attached to her tailbone and in her stomach area”, John Schiefen said.  FULL STORY:  Listen to John Schiefen honor his daughter, Kelsey It was diagnosed as Ewing Sarcoma, and it had already spread to her lungs. Kelsey’s prognosis rapidly deteriorated.  “It spread, it’s under 20%, she only had a couple of months to live”, Schiefen said.  They explained to Kelsey that she had cancer.  “She looked up and said ‘Am I gonna make it ‘till I’m 10?’”. She lived to be 19.   Treatment took the family across the country. They spent months at St. Jude Children’s Hospital.  About five years later, there were complications from chemotherapy and radiation. Kelsey was diagnosed with Osteosarcoma in the same area.  She underwent surgery at the Mayo Clinic in Minnesota. Following a 20-hour procedure, Kelsey needed a wheelchair.  In high school she joined the crew team, and loved every minute of it.  “A few years later it came back, but there were no more surgical options.  They tried different experimental approaches and stuff like that, but eventually it took her”, Schiefen.  John calls Kelsey the bravest person he’s ever met.    Their first experience meeting the Child Cancer Fund was meeting the Child Life Specialist, Miss Joli.  “It changed the experience completely.  Joli was there for ten years with us. She’d turn up, I don’t know whether we contacted her or she was just there. If there was a visit, there was Joli”, Schiefen said.  He said Joli convinced Kelsey to go to Camp Boggy Creek for a family weekend, and it ended up being her favorite place in the world.  “Everywhere we went and everything we did, there was always Joli to help back us up and give us that support”.  There is a playhouse with Kelsey’s name at the Oncology Department at Nemours Children’s Specialty Care to brighten the spirits of children during their treatment.  
  • Lucy Sembach had been a late walker and experienced problems with her balance.  The family pediatrician recommended an MRI.  In November 2016 during the MRI, a mass was discovered.  It was a brain tumor.  Ten days later, Lucy underwent a 10-hour surgery.  She wasn’t even 2-years-old at the time.   Her parents, Melanie and Casey, had to explain to their other two children what Lucy would be facing ahead.  After surgery, Lucy had to re-learn how to walk.  In March of 2017 she began chemotherapy. She completed 45 rounds of chemo, and now she is in monitoring status.  Every four months Lucy needs an MRI to make sure there is no regrowth.  The Sembachs credit Miss Joli, the Child Life Specialist, with helping make each visit to Nemours fun for Lucy.  “She treats it like she gets to go and play with kids”, Casey said.  “They always made it fun. Someone was always there to greet you, and she would light up the room when the port was being accessed”, Melanie said.  Lucy used to sing a song in the car on the way to get her chemotherapy: Time to get my chemo on.  FULL STORY:  Listen to the Sembach family’s story  Today, Lucy is a healthy 3-year-old who loves playing with her sister, Kate and her brother, Ben.   Melanie credits the Mothers for Hope, a group that the Child Cancer Fund sponsors, for helping process her emotions during Lucy’s treatments.   “You’re worried about the same things and you can cry together and have those types of talks that you wouldn’t normally have with your best friend or your spouse”, Melanie said.  “This has been the best worse experience of our lives”. 
  • Cristian Bernal may be 10-years-old, but he has the compassion of an adult, perhaps because he has faced challenges that forced him to grow up fast.  Last July, Cristian was feeling bad during a family trip to St. Augustine, he had trouble catching his breath.  His mom, Jennifer, thought he may be having an asthma attack.  But what doctors discovered was far worse, a mass on top of his chest cavity.  “I was scared and I had no idea what was going to happen to me. I didn’t know if I was going to live or if I was going to pass”, Cristian said.  The diagnosis was Leukemia.  One of his lungs was completely flat.  Doctors treated the mass with steroids, and it was gone in eight days.  FULL STORY:  Listen to Cristian Bernal’s cancer journey Cristian began chemotherapy, but he has had multiple setbacks along the way, the most serious coming in March when he had to be hospitalized for 74 days with sepsis.  The family needed financial assistance and reached out to the Child Cancer Fund.  “They’ve helped with our home bills, so if we need help with the lights or a car note, stuff like that they’ve assisted with. It’s one less thing we have to worry about”, Jennifer said.  The Child Cancer Fund has also helped pay for Cristian to be tutored so that he could keep his grades up.   Cristian is looking forward to celebrating the next big milestone, maintenance.  He wants to be an actor when he grows up, and his Mom says that’s a perfect fit for his personality. 
  • They've helped turn a tragedy, into a triumph. 'That's why we do what we do to honor her legacy. She was so brave. She's our inspiration,' said JF Kiernan about his daughter Christy. JF and Carol Kiernan created Christy's Fund as part of the Child Cancer Fund of Northeast Florida after losing their daughter Christy to brain cancer back in 2005. Their journey started back in 1997 when Christy was about to enter first grade, but was diagnosed with brain cancer. Christy went through rounds of chemotherapy, and even a surgery that left her payalyzed on her right side. Undaunted, she taught herself how to write with her left hand, even joining her first grade class despite a number of challenges, including losing her hair. She continued to battle through the years, earning a spot on the honor roll numerous times, but sadly Christy's cancer would return in 2003. She underwent a number of experimental treatments, including a stem cell surgery, but sadly Christy would pass in May of 2005. During her treatment, the child life specialist position at Nemours was crucial for not only Christy, but the other children battling cancer. Carol Kiernan said, 'she has the most infectious laugh and I think that’s another reason why the kids love her. She makes them all laugh,' when speaking about Miss Joli. She even said that many kids come back As a tribute to Christy's life and spirit, the Kiernan family started Christy's Fund. The fund aims to keep that child life specialist position permanantly funded. For the Kiernan family, it's their daughter living on. 'Imagine that no family in Jacksonville will have to go through this alone. That the Joli position will always be there. That’s our daughters legacy,' said JF Kiernan. With your generous donations, you can help every kid fighting cancer have that ray of sunshine in their battle.
  • It’s been more than 20 years since Ellen Saltmarsh walked through the revolving doors at Nemours Children's Specialty Care in Jacksonville for her last cancer treatment.  But, Ellen says the memories are still so vivid.  “When I first saw the train in the lobby I just remember going up and loving to push the button and watch the train go around,” Ellen recalls. Nowadays Ellen lives and works in Charlotte, North Carolina but she spent a lot of her childhood in the hospital battling cancer. While she says there were certain days that were harder than others most of her memories are positive. “The nurses and the doctors who helped me through my cancer and the treatment were just such wonderful that I can’t help thinking of good things when I walk through the doors,” Ellen says. Her parents, Jan and Chris, along with her older sister, Amy, attribute a large part of the positive memories to Miss Joli, the Child Life Specialist, who was there every step of Ellen’s journey.   Chris says his daughter managed to go through treatments fearless. “Joli was a big part of that because of the play therapy…she actually looked forward to it in some ways,” Chris says.  Play therapy is a form of counseling which allows children to express their feelings. Ellen says this really helped her understand what she was going through and make fun of all the treatment. “We played with all of her dolls and sat at the little low plastic tables and wrapped bandages around the dolls’ arms and hooked IV’s up to them so they would look just like me,” Ellen says. So, when the Saltmarsh family found out that Miss Joli’s position was being cut due to funding they knew they couldn’t lose her. “We were a gasped because I was the one living in that tiny little room at the end of the hallway with her day after day after day … and Joli was what kept us sane,” Jan says.  The Saltmarshes paired up with other Jacksonville parents whose children were undergoing cancer treatment and founded the Child Cancer Fund in 1994 with a $15,000 grant. But, its affects are priceless. The fund secures Miss Joli’s position and financially helps families of children battling cancer. Whether it’s making a house or car payment, sponsoring a weekend at Camp Boggy Creek, or something as simple as a family dinner, the Saltmarshes say the fund will provide about anything.  “If the Child Cancer Fund can come in and pay for a couple of hours or the family to go out and get an ice-cream cone, for the family to go out to a movie, or dinner or the parents to have adult time, that’s huge, that’s huge,” Jan says.  Ellen says returning to Nemours and seeing all of the children really makes her proud that her parents’ founded the Child Cancer Fund and kept it going. “I appreciate everything that they did for me so much and for the Child Cancer Fund because, uhm, they were there for me every step of the way,” Ellen says holding back tears. “My mom never left that windowsill, my dad never left that chair, my sister was always there even when she was looking through the glass and couldn’t get to me.” To find out how you can support the Child Cancer Fund, click here. 
  • Every family affected by child cancer has a unique journey, yet they all share something in common: they all begin with heartbreak and fear. In an instant, a completely normal life full of schoolwork and playdates suddenly turns into dozens of hospital visits and procedures. Carolina Parson and her family experienced this two years ago in Jacksonville when she was diagnosed with medulloblastoma, a brain tumor. “The unknowns,” says her father Kris.  “You have no idea what to expect.” Carolina’s mother Tabatha remembers what she was thinking in early 2014 when she first walked into Wolfson Children’s Hospital. “Walking in there not knowing what in the world,” she says.  “All we know is we just had a tumor removed and not knowing what to expect and what you’re going to hear.” Before the tumor was taken out, Carolina stopped breathing and became unresponsive.  Doctors had to drill a hole in her head to relieve pressure. “We almost lost her that night,” Kris says.  “The brain tumor had shut off the ventricles that allows the fluid to go down your spine.  But God’s been good.  She went through an eleven-hour brain surgery the next day, and they were able to get it all, which is a huge blessing.” Kris says they thought they were in the clear when they were told the tumor was removed, but they were far from done.  Doctors told them their daughter could not be considered “cancer free” at the time, and she had a 70 percent chance of survival. Kris and Tabatha, new to child cancer at the time, feared for their daughter’s life.  They didn’t realize at the time that 70 percent is actually an amazingly high number. “Perspective,” he says.  “Seventy percent…some people would kill for a seventy percent diagnosis.  It changes your perspective big time.  Other things in life don’t really matter anymore.” The Parson’s sought treatment at Wolfson, Nemours and the UF Health Proton Therapy Institute. Carolina went through seven rounds of chemotherapy and 30 rounds of proton radiation.  Right now, two years after Carolina’s tumor was removed, every MRI and spinal tap has been all clear. Now that life is becoming more normal, the Parsons have decided to give back. “We would love to be able to help families,” Tabatha says.  “Encourage them, support them emotionally, financially spiritually – and just be there.  And we’re not sure where all that’s going to lead us quite yet.” Kris says he remembers seeing single parents waiting alone in the hospital waiting room. “Just heartbreaking really to see that,” he says.  “We just want to do whatever God wants us to do to meet needs along the way, especially for those that are hurting and feeling alone.  Child cancer can obviously take you to a very dark place.” Tabatha says they want to do something to help families; they’re considering equine therapy. “We are not immune to anything,” she says.  “Childhood cancer can affect any family.”
  • There are many ways to offer support to families whose child is going through the cancer treatment process. It was that line of thought that lead Carla Montgomery, Executive Director of the Child Cancer Fund, to found The Mothers for Hope 16 years ago. Her son was undergoing cancer treatment and she felt it was a way for the mothers to come together. “We spoke a language all our own.“ She added, “Going beyond that, we just wanted to give back.” The Child Cancer Fund decided about a year ago to bring back the group Mothers for Hope to provide support for mothers who currently have a child undergoing chemo.  Although the group meets quarterly, the mothers who attend have someone they can reach out to 24 hours a day who understands what they are going through. “Our goal is to have them pick up the phone and reach out to one another whenever necessary.” Says Carla Montgomery. The Mothers for Hope has a variety of members including those who have a child with cancer, to those whose child is a cancer survivor. “Obviously there’s a need, and hopefully it’s fulfilling that need.” says Carla Montgomery.