A nasty cough and extreme fatigue first led Myrna and Lou Binder to bring their 12-year-old son, Jeff, to the doctor for an examination. But the flu-like symptoms persisted until more tests enabled the doctors to arrive at the shocking diagnosis: non-Hodgkin lymphoma. The year was 1975.
Over the next three years, Jeff endured chemotherapy and other treatments, usually at their doctor’s private offices in Upper Manhattan. But once a week, on Thursdays, he received his treatment in the public outpatient clinic that what was then known as Babies Hospital, part of Columbia-Presbyterian Hospital.
It was there that Jeff and his parents witnessed the suffering of families who were even less fortunate than they were. It was those Thursday visits that would forever change his perspective on access to care.
Helping Families When They Need it Most
While Jeff was receiving treatment, Myrna, who goes by the nickname Moppie, began volunteering at the public outpatient clinic. Inspired by his mother’s passion to give back by volunteering her time, Jeff told himself that if he was ever fortunate enough to have the means to help the families of childhood cancer patients, he would try to do so.
And so he did. Several years ago, Jeff established Moppie’s Love, an organization dedicated to providing financial help to the families of children who have cancer. The funds are provided in block grants to children's hospitals and the local staff is empowered to make decisions about how they are used. Moppie's Love has donated to several hospitals around the country.
Recently, after meeting Piper Medcalf, the executive director of The Leukemia & Lymphoma Society (LLS)’s Georgia Chapter, Jeff was inspired to join forces with LLS to launch the Urgent Need Program. The Urgent Need program provides eligible pediatric and young adult blood cancer patients, or adult blood cancer patients enrolled in clinical trials, with financial assistance for non-medical expenses including rent, mortgage, lodging, utilities, childcare, elder care, food, transportation, car repair, car insurance, phone service, and acute dental work related to treatment. Eligible patients receive a stipend of $500, once within a 12-month period, for emergent costs that impede the patient from receiving timely treatment.
A New Perspective
Jeff and the Binder family have had a profound impact on patients in urgent need of care and show no sign of slowing down, as Moppie’s Love continues to expand year after year.
“You never choose to have cancer, but it gave me a new perspective I would not have without having gone through it,” says Jeff. “I feel fortunate that I am able to give back to a cause that is so organic to my own experience. I want all childhood cancer patients to know there is hope to live a healthy adult life.”
And what is Jeff’s philosophy on philanthropy?
“Do what you can based on your means. Try to give to something about which you are passionate and is true to your experience.”
Bolstered by the success of its adult Beat AML Master Clinical Trial, LLS has set its sights on changing the paradigm for drug development for children with acute leukemia. LLS has set a goal to launch a new precision medicine clinical trial for children modeled on our Beat AML trial for adults and has convened a collaboration to lay the groundwork for a study for children with acute leukemia in 2019. LLS also has committed to doubling its investment in academic research to find new treatments for children, particularly those who don’t respond to standard treatment and to alleviate the risk of long-term side effects.
Along with research, LLS is adding more services to help children and their families, including financial assistance programs and family support.
We’re proud to team up with Julie Guillot who lost her son Zach to acute myeloid leukemia (AML) in 2014. Not only has she survived, but thrived in her quest to cure AML. She is the founder of Be Strong, Fight On (BSFO), and a passionate advocate for LLS, especially for pediatric cancer cures.
Julie, along with LLS Chief Medical Officer Gwen Nichols, MD, are in a featured episode of Robin Roberts’ digital series, “Thriver Thursday,” featuring inspiring stories of hope, survival and thriving. Earlier this morning, the segment was previewed on Good Morning America (GMA) and Julie also helped raise awareness through a Facebook Live conversation one on one with Robin.
LLS is committed to providing information, resources and support to those affected by blood cancers. Speak one-on-one with an Information Specialist who can assist you through cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information. Our Information Specialists are master's level oncology social workers, nurses and health educators.
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The winter months bring cold and flu season, which can take a toll on your health. While flu shots and rest are common advice for prevention, a strong immune system is critical to keeping you healthy all year long. According to Margaret Martin, RD, MS, LDN, CDE, a Registered Dietitian at The Leukemia & Lymphoma Society, “Your body’s ability to fight infection and disease depends on your immune system.”
Margaret provides one-on-one nutrition consultations for people with cancer who have a weakened immune system due to the effects of treatment, but she says keeping a healthy immune system is important for everyone. “Boosting your immune system during and after cancer treatment can help you feel better, maintain your strength, avoid treatment delays and speed your recovery. This goes for anyone fighting an illness, or preventing one.”
Margaret offers these important tips to help boost your immune system and keep it running smoothly throughout the year.
Keep a plant-based, heart-healthy menu.
Choose foods first as your source of vitamins and nutrients. Unless your healthcare team directs you to take a vitamin or supplement, you likely do not need one. The best way to include these nutrients is by eating whole foods. Make sure your meals incorporate a variety of vegetables and fruits, whole grains, legumes, beans, lean protein and healthy fats.
Eat small, frequent meals throughout the day to stay energized and to ensure your body is getting enough calories, proteins and nutrients. Protein acts as a “builder” and the body uses it to build and repair tissues. Protein is also vital for making hormones and enzymes that promote the body’s daily functions and supports a healthy immune system. In addition, drinking eight to 10 glasses of fluids every day is one of the most effective ways to flush waste from your body and support the health of your immune system.
Power up with phytochemicals.
Fruits, vegetables and other plants contain naturally occurring substances known as phytochemicals. Phytochemicals give fruits and vegetables their color and flavor. Phytochemicals act as soldiers in the immune system to protect the body from damage. Studies show that phytochemicals help support the:
* Immune system
* Creation of healthy cells
* Death of damaged cells (such as cancer cells)
Decrease your risk of malnutrition.
It can be harder for a malnourished body to fight off an illness or infection. Malnutrition results when the body does not receive enough calories and/or nutrients to promote good health and sustain healthy functioning of your body’s systems. When you’re “in the slumps,” it can be easy to avoid eating altogether. Follow these tips to reduce your risk of malnutrition during cancer treatment:
* Choose a variety of foods each week from all the food groups. Talk with your healthcare team before changing your diet. Eat regularly throughout the day, every four to six hours. Even if you do not feel hungry, try to have a snack or mini meal. If you forget to eat, try setting a timer.
* Include a protein source with every meal and most snacks.
Make changes to your lifestyle. And stick to them.
In addition to using nutrition to boost your immune system, you can also make changes to your lifestyle to help support health and immunity. These include:
Decrease your exposure to bacteria, viruses and germs.
Aim for 7 hours or more of sleep every night. If your sleep is interrupted, try a 30-minute nap during the day.
Reduce stress by taking time to do things you enjoy such as spending time with family, spending time outdoors or reading. If your feelings of anxiety or depression make it difficult for you to complete daily tasks, talk to your healthcare team.
The Leukemia & Lymphoma Society offers PearlPoint Nutrition Services to all cancer patients and caregivers, providing free nutrition education and consultations. Visit www.LLS.org/nutrition for more information.
