The Forgotten Survivors: The Importance of Cancer Services’ Kids Kare Program

Paige, Danielle, Nadia, Courtney and Caleb Julien at Cancer Services after speaking to our Board of Directors about the importance of Kids Kare.

Paige and Caleb ready to ice skate at one of our monthly Children’s Events

Cancer never affects just one person. Like the proverbial pebble in a pond, it ripples out to family members, friends, coworkers and neighbors. Every day, Cancer Services attends to the various needs of ALL those affected by cancer, including the children whose family members are diagnosed. 

When people think of kids affected by cancer, most imagine children who have the disease. Our Candlelighter Program provides support for them and their siblings. But often people forget the impact that a parent’s cancer diagnosis can have on a child. Cancer Services Director of Support Programs Esther Sachse, LCSW, explains, “The children of our parents with cancer are often the forgotten survivors, yet they are a crucial part of our mission.  When Dad is too sick to toss a football or Mom is in treatment and can’t help pick that prom dress, children experience some of the losses associated with cancer.  Our Kids Kare Program creates special family moments that help carry survivors through the cancer journey.”
   
At just 32 years old, Courtney Julien, father of three, experienced kidney failure. One minute he was going about his work day as a process operator at CF Industries and the next minute he was in the hospital, soon to be diagnosed with a rare type of lymphomathat started in his prostate and engulfed his bladder and kidneys. He, his wife Danielle and their children all began a difficult journey that uniquely affected each one of them.
   
Thankfully, the Juliens found that Cancer Services could help the entire family with their various physical, emotional and financial needs. In addition to being a safe place to talk, the agency helped Courtney pay for his prescriptions to ease the high costs of a diagnosis and provided products to ease the side effects of treatment. Treatments were tough and Courtney was in and out of the hospital for weeks. His children  struggled to understand why their strong dad, their “Superman,” was sick. “The day I got home from the hospital, I still had tubes and was recovering,” Courtney says. “When Nadia saw me, she was so excited she ran up to jump on me like she used to and everyone screamed to stop her. Every day they’d ask if Dad could play and they didn’t understand when I couldn’t.”

Nadia and Paige with Santa at the Children’s Holiday Party.

As the Juliens adjusted to this “new normal” they began grasping for things that resembled their old life, including special family time and outings, now difficult because of Courtney’s limited physical abilities and their financial situation. Cancer Services and Kids Kare helped fill that void. The monthly children’s events give the Juliens and dozens of other families the chance to spend time together “outside a world of hurt” and not worry about sickness, shots or chemo. “They’re great times for us,” Danielle explains, “Even the baby can come and enjoy.” She claims it even helped her husband heal quicker, “He was able to enjoy his kids again and we got to meet other families and know we’re not alone.” But Kids Kare is not just about fun activities, it’s about families and giving children a sense of normalcy during a scary and confusing time.

Today Courtney and his family are doing well and still attend events. Despite his progress, cancer is still present in their lives. Over a year later medical bills are mounting and Courtney is still adjusting to being back at work. Danielle smiles and says, “Praise the Lord, everything’s OK today. We’re so blessed to have Cancer Services. Please don’t ever stop doing what y’all are doing.”

For more about the Kids Kare or any other program, call Cancer Services at 225-927-2273.

Cancer News

from Sloan-Kettering:

Long-term Outcomes for Prostate Cancer Show Intensity Modulated Radiation Therapy Curative: 89 Percent of Men Disease-Free Eight Years Later
"Results from the largest study of men with prostate cancer treated with high-dose, intensity modulated radiation therapy (IMRT) show that the majority of patients remain alive with no evidence of disease after an average follow-up period of eight years."


from Indiana University:
Headache Herb May Boost Cancer Survival
"Now scientists at the Indiana University School of Medicine want to write another, hoping to turn an extract from feverfew--an herb traditionally used as a treatment for migraine headaches--into a new tool to fight cancer.
The compound, parthenolide, may be a key to reducing the spread (metastasis) or the recurrence of several types of cancer, including breast, prostate, lung, bladder, leukemia, and myeloma."

Women with Mental Disorders Less Likely to Have Mammograms: Nature of Mental Illness Does Play a Role
"Severity contributed to lower receipt of mammography among women with mood and anxiety disorders, however women with psychotic, alcohol, and substance abuse disorders had decreased odds for receipt of mammography regardless of severity, the authors reported."


from M.D. Anderson:
Researcher at M. D. Anderson Cancer Center Receives $250,000 Carcinoid Tumor Research Grant
"The Caring for Carcinoid Foundation has awarded a $250,000 grant for carcinoid research under the direction of Lee M. Ellis, M.D., professor of surgery and cancer biology and The John E. and Dorothy J. Harris Professor in Gastrointestinal Cancer Research at The University of Texas M. D. Anderson Cancer Center."


from the Center of the Advancement of Health:

Direct Access to OB/GYNs Fails to Improve Cancer Screening Rates
"Laws requiring managed-care plans to allow women direct access to obstetricians or gynecologists have failed to increase screening rates for breast and cervical cancer, according to a new study."


from the International Program for Psycho-Social Health Research:

Evaluation of Use of Standardised Questionnaire for Hospice
"The study is examining the question of whether the use of a number of assessment questionnaires interferes with or facilitates holistic, compassionate hospice care. To achieve this end, this work focuses on patient's descriptions of their experience with filling out the questionnaires."


from St. Jude Children's Research Hospital:

New hope for children when leukemia treatment fails
"Clinicians at St. Jude Children’s Research Hospital have successfully demonstrated an improved technique for blood stem cell transplantations in children that shows promise for those most likely to fail standard treatment for leukemia."

St. Jude announces breakthrough in eye cancer treatment
"Scientists at St. Jude Children's Research Hospital have demonstrated in the laboratory a new, locally applied treatment for the eye cancer retinoblastoma that not only greatly reduces the size of the tumor, but does so without causing the side effects common with standard chemotherapy. "

from the Leukemia and Lymphoma Society:
U.S. OKs Gleevec for Five Rare Diseases
"The newly approved uses for Gleevec include treatment of dermatofibrosarcoma protuberans, Philadelphia chromosome-positive acute lymphoblastic leukemia, hypereosinophilic syndrome, aggressive systemic mastocytosis, and some myeloproliferative disorders. "


from MSNBC:

Control your hormones to stop breast cancer
"Researchers now agree breast cancer occurs in several distinct forms. Although researchers continue to unravel how each form develops, a variety of hormones are critical pieces of the puzzle...a few steps [are] likely to promote healthy levels of the hormones involved."

Anti-smoking messages to appear on DVDs
"Film industry veterans Bob and Harvey Weinstein will put anti-smoking video messages on DVDs of movies in which people smoke — a move sought by U.S. states to combat teen smoking.
Beginning with December's release of "Clerks II" by director Kevin Smith, Weinstein's DVDs will include an anti-smoking ad aimed at discouraging kids from lighting up."


from the United States Department of Health and Human Services:
HHS Secretary Announces Development of Physical Activity Guidelines at National Prevention Summit
"HHS Secretary Mike Leavitt today announced that the Department will develop comprehensive guidelines, drawn from science, to help Americans fit physical activity into their lives."


from the National Cancer Institute:
Lung Cancer Screening Study Spurs Optimism, Caution
"New results from a large, observational study suggest that using spiral computed tomography (CT) to screen people at increased risk for lung cancer can detect the disease at an early stage and may increase the number of people who can be cured. Currently, the vast majority of lung cancer diagnoses aren't made until the disease is well advanced, and most of these patients die within 5 years."

Cognitive Behavior Therapy Helps Survivors Overcome Fatigue
"Posttreatment fatigue is a common and debilitating side effect faced by many cancer survivors. A new study published in the October 20 Journal of Clinical Oncology reports that cognitive behavior therapy (CBT), a form of psychotherapy, can be an effective tool for fighting persistent posttreatment fatigue."


from CureXtra:
Avastin Added to Standard Treatment for Lung Cancer, Cost Capped at $55K
"Avastin® (bevacizumab) was approved in combination with carboplatin and paclitaxel chemotherapy for the first-line treatment of a common lung cancer."

Vectibix Approved for Metastatic Colon Cancer, Price Cap Set for Drug Cost
"After the announcement that Vectibix™ (panitumumab) was approved for metastatic colorectal cancer following priority review by the Food and Drug Administration, the drug’s manufacturer, Amgen, announced the Vectibix Cap, a price cap for out-of-pocket expenses for patients equaling 5 percent of their annual income, regardless of income level or insurance status."


from Merck:
Merck's New Cervical Cancer Vaccine, Gardasil®, Unanimously Recommended by CDC Advisory Panel for Vaccination of Girls and Women 11 to 26 Years
"...the U.S. Centers for Disease Control and Prevention's (CDC's) Advisory Committee on Immunization Practices (ACIP) voted unanimously to recommend that girls and women 11 to 26 years old be vaccinated with GARDASIL® ...to prevent cervical cancer, precancerous and low-grade lesions, and genital warts caused by human papillomavirus (HPV) types 6, 11, 16 and 18. "


OTHER WEBSITES OF INTEREST

If you want to find out if that "forwarded" email is really true, check out SNOPES, the Urband Legends Reference Page that researches the validity of some circulating emails.

For a while emails were circulating (and still are) about dioxins and how freezing and microwaving plastic containers can release chemicals into our foods and cause cancer. This is an urban legend. If you are concerned about microwaving food, dioxins, and cooking with plastics, the following two sites have helpful, reliable information on those topics:

Tips from the FDA on how to microwave food (imho, take a few more minutes and use the oven; toss the microwave).

What are dioxins? How do I cook with plastic? Rolf Holden, PhD. from the Department of Environmental Health Sciences, Johns Hopkins Bloomberg School of Public Health, answers these questions and more.