On May 8, Chai Lifeline kids got to experience the race of a lifetime at this year’s Formula 1 Miami Grand Prix race. A special anonymous donor generously provided four nights at a hotel and highly sought, sold-out tickets to 18 Chai Lifeline kids and their families. The group had a great time watching drivers race by their track-side seats up-close.read full story
In the words of a well-known politician, “It’s going to be HUGE!”
That’s the advance word on this summer at Camp Simcha/Camp Simcha Special, the overnight summer camp designed to meet the medical and social needs of children and teens with a wide variety of serious illnesses. read full story
It’s always enchanting to watch the buses pull in to Camp Simcha. Four times a summer, children alight into the waiting arms of counselors, go through a purple arch and emerge into a world where illness recedes and fun awaits. read full story
Does Chai Lifeline bring out the natural empathy in people, or are people who are touched by the organization more likely to nurture their empathetic abilities when choosing careers?
A new generation of girls fighting cancer marched over the Brooklyn Bridge in a celebration of life, joy, and hope.
Eight months ago, Becky B. was diagnosed with Ewings Sarcoma, a rare cancer that attacks bone and surrounding tissue. Since then, the 13-year-old’s life has centered around hospitals and painful treatment. The one bright spot has been the support of Chai Lifeline, whose volunteers and professionals have “adopted” the family, filling their lives with light during a very dark period.
This summer, Becky is going to Camp Simcha, Chai Lifeline’s overnight camp adventure for children with cancer and other life-threatening or chronic illnesses and disabilities. She can’t wait, and neither can her family. read full story
Your Child Beat Cancer (YAY!). 5 Things Your Pediatrician Should Know
Physicians Lisa Diller, the chief medical officer of the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and Peter Manley, an oncologist and director, Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic, note five areas for pediatricians as survivors transition back to healthy pediatric care.
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1. Physicians should receive a copy of the child’s treatment summary and care plan created by the oncologist.
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2. Remember that the end of treatment is also a time of anxiety and transition for children and parents.
3. Watch for signs of side effects from treatment. (The article notes resources for the physical effects of treatment, but pediatricians and parents should be on the lookout for emotional and social changes as well.)
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4. Know what services are available for survivors and their families.
5. Promote good health habits.
Read the entire article here.
What happens when you drag a bed around New York City and encourage people to jump on it?
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Filmmaker and Camp Simcha division head Meir Kalmanson knows. People feel likes again. Kalmanson and his crew invited people to jump on a bed to help them remember that sick children miss out on more than just being able to jump on beds. The video, released today, has already tallied thousands of views on YouTube, and Kalmanson (and Chai Lifeline) hope it will spread awareness of the organization worldwide.
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Getting Your Kids Into the Game
Most of us recognize Title IX as the shorthand for Federal regulations requiring schools to provide equal access to sports to women. But do you know that similar regulations mandate that children in schools that receive federal funding have equal opportunities to participate in all activities, including sports and extracurricular programs?
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In theory, this means that schoolchildren can’t be left out because of physical or cognitive disabilities. In reality, inclusion takes understanding and work on the parts of families, schools, community sports leagues and sports facilities.
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Many times, children who are ill or who have disabilities end up on the sidelines simply because no one knows how to include them or because they fear that inclusion will be expensive, intrusive, or uncomfortable for healthy children. Sometimes, talking to coaches, teachers, and other parents can help ease the way for a disabled athlete. Be prepared to stand your ground, though. PGA pro Casey Martin, who suffers from a degenerative nerve disease, went all the way to the Supreme Court to assert his right to use a golf cart in tournaments.
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Remember that some sports activities are easier to integrate. Disabled athletes can use prosthetics during swim meets or hand cycles during bicycling events without impacting other children. Team sports require more cooperation, but isn’t what we’re trying to teach children when they play together? If you encounter resistance (and even Casey Martin’s pro-colleagues groused when he needed a golf cart), ask dissenters to remember that sports are supposed to be fun for children. It isn’t – and shouldn’t be – all about winning. Offer to speak to classes and teams about inclusion. Many times, the kids get it before their parents. They feel good about helping someone else feel like part of the group.
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If your child needs more assistance than your school or town can give, there are organizations that specialize in everything from adaptive skiing to therapeutic riding to running marathons. Disabled Sports USA is a good place to start. The New York City Sports Commission lists NY State resources, including adaptive playgrounds; other states may have similar guides.
Physical activity promotes cardiovascular and physical strength and increases range of motion and physical activities. These are as important for sick children as healthy ones. Most important, mastery of a sport or activity (at any level) helps children feel good about themselves. The self-confidence and esteem will transfer to other areas of their lives. So encourage all children — healthy, ill, or disabled — to have fun!
When the September Dilemma Continues Into October
For children who are ill, returning to school in September can be a mixture of relief and dread. Relief, because children thrive on the order, routines, and social life of school. Dread, because school can be an ambivalent experience for students who need some sort of accommodation in school.
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While schools must meet the needs of ill and disabled students by law, administrators and teachers range from amazingly helpful to eye-poppingly intransigent when asked to deviate from their norm. Parents are often counseled to “wait and see,” but what can you do when September turns into October and your child hasn’t settled comfortably into school?
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Thankfully, it doesn’t happen all the time. But it occurs often enough for us to have gleaned some advice from Chai Lifeline’s professionals and parents of children who are out of school for cancer treatments or who need extra assistance because of chronic illness or disabilities.
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