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.

Q&A: Physical Changes

Every Sunday, Cancer Services publishes a Cancer Q&A in the Health Section of The Baton Rouge Advocate.

Q: I’ve just completed my final cancer treatment and am wondering what physical changes are normal for survivors?

A: Physical changes after treatment greatly depend on what type of cancer you had, what type of treatment you received and your age during the time of treatment. The National Cancer Institute (NCI) compiled a list of common physical changes and problems that people have post-treatment that include:

• fatigue
• memory and concentration problems
• pain
• neuropathy
• lymphedema (swelling)
• mouth/teeth problems
• weight changes
• different eating habits
• trouble swallowing
• bladder and/or bowel control problems
• menopause symptoms

It is also common to worry about cancer recurrence. Almost all cancer survivors are concerned about the possibility that their cancer will come back. It is helpful, when coping with the fear of recurrence, to express your feelings, avoid blaming yourself for your cancer, and focus on what you can control. If you feel your fear may be excessive or simply want to express your feelings to other cancer survivors, Cancer Services offers free counseling services and support groups to anyone diagnosed with cancer.

For more information contact Courtney Britton, librarian at Cancer Services of Greater Baton Rouge at (225) 927-2273, cbritton@cancerservices.org , or visit the Resource Center at 550 Lobdell Avenue.

No Survivor Left Behind

Participants in the one of Cancer Services’ new
Survivorship Events: The Shine a Light on Lung
Cancer Vigil held this past November and sponsored by
The Lung Cancer Alliance.

Every new year brings new resolutions and Cancer Services has made another one for you in 2012. Each month, Cancer Services will be hosting a different survivorship event to celebrate and honor a survivor’s journey. It’s no secret that some cancers get more attention than others. At Cancer Services we want to make sure all our clients feel supported in meaningful and relevant ways.

Starting this past November, Lung Cancer Awareness Month, Cancer Services hosted a special Lung Cancer Survivorship Luncheon to which clients could invite their family and caregivers. We also hosted the Shine a Light on Lung Cancer Vigil, open to the entire community.

Cancer Services will continue similar events in 2012 bringing together various survivor groups in a personalized and meaningful way. Director of Support Programs, Esther Sachse, LCSW explains, “All our clients are important to us and we want to support them any way we can. Survivorship luncheons are a great opportunity for clients to network with others and celebrate the meaningful life one can lead as a survivor.”

According to the National Cancer Survivors Day Foundation, a cancer survivor is anyone with a history of cancer, from the moment of diagnosis through their journey. Thus Cancer Services refers to all clients as "survivors.” We are here for you and all 6,000 of our clients as you live with, through and beyond cancer.

For more information on our support groups or any of our support services, call Natalie at 927-2273.

Steve Lousteau for Cancer Services

Steve Lousteau (right) with his children
Jeffrey and Jennifer.

While growing up in south Louisiana, I knew that
cancer was a disease that impacted many people. Because there was no experience of cancer in my own family, I developed a false sense of security that I would go through life not having to deal with such a dreaded illness. That all came to an abrupt halt when my wife’s sister, Lena, was diagnosed with stage IV breast cancer in December 2005. In spite of an operation and numerous treatments, our family lost Lena in March of 2007. My family was devastated.

We “picked up the pieces” and began the recovery process of overcoming the loss of someone who was so dear to so many. Then in July 2008 my family was hit with more shocking news…. my wife of 29 years, Amber, was diagnosed with stage IV lung cancer. Amber fought the good fight but passed away in May 2009. While the physical, emotional, mental and financial stress in fighting this deadly disease is excruciating, the pain that I, and my children, felt after losing someone we so dearly loved is beyond description.

Then more bad news hit my family in November 2010 when I was diagnosed with prostate cancer. My first thought was, I can’t believe this is happening again! Fortunately for me and my family, my situation has a happy ending. Because of early detection and a successful operation, I am pleased to report that I am cancer free and enjoying life again.

So why do I share my story with you? It is because you never know when cancer will strike you, a family member, a friend or a colleague.

The common thread that weaves through each of my own family experiences with cancer is the phenomenal support provided by Cancer Services. This is a great organization that can provide aid in the form of information, financial assistance and resource support. I’m deeply indebted to them for providing me resources to help Amber while she fought for her life.

The life of any organization is dependent on the financial strength of its organization. Cancer Services is no different. Being that Cancer Services is a non-profit organization, it relies on contributions from the generous citizens of our great community to help continue its mission of helping people afflicted with cancer. While I hope and pray that you never need Cancer Services, Cancer Services very much needs YOU! Your gift enables Cancer Services to continue to help cancer patients and their families when they need help most. Visit their website to donate online or by mail to 550 Lobdell Ave. Baton Rouge, LA 70806. Feel free to stop by to see how your gift helps those living with cancer every day.

Thanking you in advance, please make a difference by donating today!

Breast Cancer Survivorship Luncheon a Success

On September 19^th, over 60 breast cancer survivors* gathered at Cancer Services to celebrate Breast Cancer Awareness Month. Held in partnership with Woman’s Hospital, the attendees enjoyed lunch and the company of fellow survivors, caregivers, family and friends.

The Breast Cancer Support Group meets every month but with the help of Woman’s, October’s meeting was larger and even more celebratory than usual, giving the opportunity to reach out to many new clients. Attendees ranged from currently in treatment to two weeks outs of treatment to thirty years out of treatment.

Breast cancer survivor and Cancer Services volunteer Sandra Cristal helped plan the event and was pleased with the huge turnout. “This is a cause that’s important to me and it was wonderful so many showed up – the room was almost too small!”

Adult Programs Coordinator Natalie Depp added, “This was a great opportunity to show that at our support groups we don’t just talk about problems and sad emotions but share friendships and celebrate where our clients are in their cancer journey.”

The Breast Cancer Support Group meets the third Wednesday every month at 11:30 at Cancer Services. For more information about this or any of our support groups, click here or call Natalie at 225-927-2273.

*Cancer Services defines a “cancer survivor” as anyone living with cancer, from the moment of diagnosis for the rest of their life.

Support Behind Bars: Our Program for Women Fighting Cancer in Prison

There are a few people who might say that going through cancer is like being in prison – that it sometimes feels as if your body is a prisoner to the disease. For a select group of women at the Louisiana Correctional Institute for Women (LCIW) in St. Gabriel, that statement has a deeper meaning. They are living with, through or beyond cancer - and living behind bars.

Our Program Director, Esther Sachse, began facilitating the new LCIW Survivors for Life monthly support group in January 2010. LCIW started this group as an innovative way to give support, comfort and information to inmates who were dealing with cancer.

The women in the group say that they look forward to group meetings now more than ever. “We have the same fears about cancer as those in the outside world,” said group member Melanie. “We are scared of the nausea and the side effects. We are scared of what will happen if the cancer progresses. Since we don’t have our family members here to encourage us, this group is our family and our inspiration to keep going.”

Just as with any support group here at Cancer Services, this sense of encouragement can be easily seen. When one group member, Paulette, announced that she was not yet going to pursue treatment for her pancreatic cancer, the group chimed in with words of encouragement. “You must fight for your life,” group member Gail said. “You need to be aggressive with your cancer before it is aggressive with you.”

Paulette expressed that she has all of the same fears that someone who isn’t in prison might have. “I’m scared to get sick from chemotherapy and I’m scared of losing my hair,” she said. But by the end of the meeting, with the group’s encouragement, she had decided she would ask to pursue a doctor’s appointment at Earl K. Long hospital.

The group’s administrator, Ms. Jeanetta Dent, says the program has had a positive impact for the women. “Even though they are incarcerated, they need help and comfort. Some of the women had cancer before they came here and are still dealing with the effects. Some of them are fighting now and some have also had children with cancer. This group gives them an opportunity to connect and to know that they aren’t alone in their situation - that there are others who understand what they are going through, even in this unique circumstance.”

Lorena, a group member who is set to be released by the time this newsletter is delivered, said that she feels the group has prepared her for returning to society as a cancer survivor. “I faced cancer once here and I will need some help when I leave. Now I feel like I have the support necessary in order to address that part of my life.”

Many people say that a positive attitude is half the battle when dealing with a cancer diagnosis. For these women, it may be hard to stay positive while behind bars, but thanks to the new support group, they are finding the courage to deal with their cancer. As Lorena said, “There aren’t a lot of things that we can control in prison. But we can control supporting one another.”

This support group shows that just as cancer can go behind bars, so can our mission. We are here to improve life for those living with cancer - no matter the circumstance.