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Charity

    “It’s tough, right now Kacey, what would you say? Your blood is sick and we’re making it better?” Mike Ladd finds himself in a position no parent is every prepared for. His four-year-old daughter Kacey has leukemia.  The signs started innocuous enough; a fever. The family took Kacey to a doctor, who dismissed it as a run-of-the-mill sickness. Mike says they didn’t think much of it until one day, “I came around the corner of my house and Kacey was just in a hulk. Just a lifeless mass on the ground.”  An alarming sight, the family took Kacey to Nemours to be tested. As they started to eliminate possible ailments, doctors zeroed in on a diagnosis of Leukemia.  “At some point they start talking about Leukemia and we’re very, very scared. You kind of hear about it. You kind of go through life with blinders on not knowing what’s out there and get woken up like that.”  And it wasn’t easy news for Mike to process. “You break down because you start letting your mind run. You start thinking about life without your child and my wife was like ‘hey suck it up.’ You know, ‘put the rucksack on and let’s get going.’“  Mike said they buckled down, reading every pamphlet and piece of information available to them about the disease. His wife never left Kacey’s side through it all. They were building up for the fight of their life.  But the Ladd family didn’t have to do it alone. Mike recalls the support he got from family, friends and even his workplace. Despite the hardship, Mike found an opportunity for gratitude and a chance to count his blessings. “It sounds odd to say, but I’m one of the most fortunate cancer parents you know. Being a full-time National Guardsman and luckily having Tri-care for medical insurance that’s very comprehensive.”  Grateful for the medical care Kacey was receiving, the Child Cancer Fund helped fill in the gaps. Whether it was a toy or something as small as a lollipop, things that Mike says often don’t come to mind or simply can’t be purchased because of time constraints.  “Even a doll, a $10 or $15 doll given at the right moment, that’s more important than a million dollars,” Mike adds.  Kacey is currently undergoing daily chemotherapy and antibiotic boosts on the weekend until 2020. A tough schedule, but the family remains positive.  “God willing we’ll stay cancer free. We won’t have any ‘r-words’ come up,” So Mike says they remain extremely optimistic. “We never ever talk about losing the fight, she doesn’t know that’s an option and she’ll never know that’s an option. “  Mike wants you to know your donation to the Child Cancer can help tremendously.  “It matters to these kids, and I guarantee you there’s no one that deserves it more than these kids.”
  • Cancer is one of the toughest diagnosis a parent can face, but when Rankin’s parents found out he had acute lymphoblastic leukemia, they had already been dealing with two tough diagnosis.  Rankin is a child with Autism and Down Syndrome. It all started in 2008 with a swollen hand, but when his father took Rankin to his doctor for some tests, he found it was much worse than he feared.  “His white count came back incredibly high, so fear and panic started with my wife and spread to me, obviously,” Pete Lee said.  “He was checked into Nemours that very day, and treatment started the next day.” It was a diagnosis that changed their lives again.  For even though they were used to their struggles with their young son’s conditions, they didn’t know how he would react to a tough treatment regimen.  “A lot of times Rankin would struggle and fight,” Lee said, “but the people at Nemours were fantastic so we were able to get it done.”  Lee credits a Child Life Specialist “Ms. Jolly” with brightening their day, and keeping Rankin calm or distracted when he’d undergo his blood draws.  “She could bring a smile to your face when you had no intention of smiling.  Some people say, ‘you fight cancer,’ and you do, but you fight cancer with help.”  Lee said Ms. Jolly, whose position is funded entirely by the Child Cancer Fund, also made the difficult, exhausting time the adults a bit easier.  “We always had someone there to make the situation lighter, and Ms. Jolly is the best at that.  The best I’ve ever seen.” Against the odds, Rankin beat cancer and has been in remission since 2012.  He’s now 20 years old, and his parents say they still have his miracle story in the back of their head every day, but they cherish the moments they have with their son thanks to his fantastic treatment and the people who fought alongside them at the Child Cancer Fund.
  • “My heart was prepared for a big life-changing diagnosis, I wasn’t thinking cancer.” It’s the last thing on the minds of a lot of parents when they notice something different about their kids. Katie and Jeremy Albers just knew something was off when Gabe started to show atypical symptoms. He started to have a lot of belly pain, a lot of joint pain, and it was hard for him to do certain movements. It was a revolving door at the doctor’s office for the Albers family for months as they try to pin down what exactly is happening to their child. It wasn’t until June of 2016 when the family took Gabe to the ER after having severe belly pain and after about 24 hours they were given news that would change their lives. An MRI found one tumor over Gabe’s pituitary gland, but that was just the beginning. A subsequent MRI showed tumors all throughout his central nervous system…his brain and his spine. The tumors were blocking the flow of fluid from Gabe’s brain which is what led him to have those troubling symptoms. Then the family got the diagnosis – a rare form of cancer called Diffuse leptomeningeal glioneuronal tumor. The family started talking about treatment after Gabe went through brain surgery to help alleviate the pressure.  Getting the diagnosis was completely devastating to our family. The Albers didn’t know stop there. Family members and church members rallied behind the family. Katie says she didn’t have to cook dinner; her parents would watch the other boys while Gabe had to go to the doctors. Katie did say financially she ended up quitting work but is very thankful that the Child Cancer Fund existed, but the family didn’t need the financial help.  PHOTO GALLERY: Gabriel Albers  The family did appreciate the Family Retreat Weekends were tremendous for the Albers. Katie says the entire family was able to enjoy spending time together with everything being covered by the Child Cancer Fund.  Gabe is now in remission and is doing well. Though his mother says the tumors in his brain and spinal cord will always be there. After chemo infusions ended in March of 2018 and his scans have been stable ever since. Katie says as long as they stay stable – Gabe will never need treatment again.  We just passed the anniversary of when he was diagnosed, and I thought coming up to it, I thought it was going to be a sad day but it honestly was a very peaceful. I was very thankful that we are on this side of treatment. Looking back, Gabe mentions he loved going to the clinic. His mother would say it was because he was getting gifts and unlimited screen time. One person does come to mind on why Gabe enjoyed it so much, Ms. Jolie.  She gives me beads of courage every week and when I see her, and she talks to me, I feel better about getting my needle.
  • 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.  Today, Lucy is healthy and she 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”. 
  • 25 years ago, two mothers who were passing acquaintances joined forces when they were informed about a critical need. The Child Life Specialist in Oncology at Nemours Children’s Specialty Care, Joli Craver, was told her position was being eliminated due to budget cuts.  For Jan Saltmarsh and Laura Ferrante, that was unacceptable.  Miss Joli, as their children called her, was a critical ally in their fight.  Both Jan and Laura’s daughters were in cancer treatment. And both girls actually looked forward to going to clinic because Miss Joli made it fun.   Jan and Laura set out on a mission to find donors who would be willing to support the Child Life Specialist. And with that, the Child Cancer Fund was born.  25 years later, Miss Joli is still entertaining kids who are in various stages of cancer treatment, and her position will forever be in place at Nemours through a restricted fund.  INDEPTH:  Stories, photos, videos from Careathon In 2015, News 104.5 WOKV partnered with the Child Cancer Fund to launch the WOKV Careathon, a day-long broadcast featuring stories from local childhood cancer survivors and their families.  Every dollar raised through Careathon goes directly to local families through multiple programs offered by the Child Cancer Fund.  BID NOW:  Careathon auction In four short years, Careathon has raised nearly $720,000. Proceeds from Careathon have helped complete the Child Life Specialist restricted fund and have paid for financial assistance and support services offered by the Child Cancer Fund.  Here is what a donation to the Child Cancer Fund can accomplish:$1,000 pays for Mom or Dad’s support group for an entire year (meals, meeting space, etc.)$750 pays for a family weekend at Camp Boggy Creek in Central Florida$500 covers the cost of a private tutor so child don’t fall behind in school$100 covers the cost of a gift card for groceries for a family battling pediatric cancer$50 pays for gas to get to and from treatment, in some cases daily$25 pays for books with information for newly diagnosed families$10 covers snacks, toys, and diversionary supplies for the Child Life Specialist to use with a child Volunteers from the Child Cancer Fund and Cox Media Group Jacksonville will be taking donations by phone from 5am - 6pm on Friday at 855-636-6877.  Secure donations can be made online directly to the Child Cancer Fund.  And donations can be made through the 2019 Careathon Auction, which is open until Monday, July 15th at 12pm.  
  • The WOKV Careathon to benefit the Child Cancer Fund of NE Florida raised more than $230,000 for local pediatric cancer patients and their families. The Careathon Auction closed at Noon on Monday, July 15th.   All winning bids will be donations to CCF.   BROWSE AND BID:  2019 Careathon Auction
  • 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.