Xiomara and Jaeden’s Story of Help and Hope

July 17, 2014

Xiomara, 46, had never been affected by cancer until her son Jaeden was suddenly diagnosed at age three with ependymoma, a rare type of brain tumor.

“No one in my family had ever had cancer. When you hear about it, it is totally different than when it actually hits your family – especially a toddler,” she explains.

In 2010, Xiomara noticed that Jaeden began frequently stumbling and falling. “One day he was playing on the floor and he looked up at me and his eyes crossed. I thought it was kind of strange. I told myself, now I’m going to look into this and took him to the pediatrician.”

After Jaeden received an MRI, the doctor called to deliver the news. “He kept saying ‘I’m sorry, I’m sorry.’ When he said the word cancer, I was stunned. He asked me to write down these phone numbers, but I couldn’t write. It is a feeling you just can’t describe. It hits you.”

Jaeden was quickly scheduled for surgery to remove the tumor and spent the following two weeks in the intensive care unit. “It was nerve-racking. My sister came to the hospital and waited 16 hours during the surgery with me. Waiting, waiting and waiting. It was hard on my other two children. My first son couldn’t walk into the room because of the tubes and bandages.”

As part of his treatment plan, Jaeden was transferred to a rehabilitation unit and underwent six weeks of radiation. He also had eye surgery and began outpatient therapy. He will most likely undergo eye surgery in the near future and continues weekly therapy.

Since Jaeden’s diagnosis, Xiomara has received financial assistance through a partnership between CancerCare and The Lavelle Fund. This fund supports programs that help people who are blind and visually impaired lead independent, productive lives.

Jaeden celebrating his seventh birthday

“CancerCare helped me out with medical bills that I had to pay, along with the transportation to vision therapy. If it wasn’t for that I don’t know what I would have done. I’m still struggling as a single parent, but they have helped and I’m very grateful.”

Now seven years old, Jaeden is thriving at school and summer camp. “I’m grateful to know that his tumor is out and that he’s doing as well as he is right now,” says Xiomara. “He’s walking, he’s talking. I still think about it and am still nervous about it. That’s my little angel. He’s a strong little boy.”

 


Finding Support for the Cancer Caregiver

July 7, 2014

If you are helping to care for a loved one with cancer, you are a “caregiver.” It can be an incredibly rewarding role, but it can also take an emotional and physical toll. You need support, too.

Some caregivers find it difficult to ask for help. You may feel embarrassed or like you’re imposing on others. But getting help is important—for both for you and the person you are caring for.

The website Help for Cancer Caregivers was created especially to help you take care of yourself, while you take care of your loved one.

CancerCare client Kathryn opened up about her caregiving experience after her husband was diagnosed with melanoma. “One of the biggest challenges that I was facing as a caregiver was feeling the need to be ‘on’ all the time, feeling that I had to be the one who remained strong and healthy. I was surrounded by people who loved both of us and supported us, but there was no one in the room who really understood what I was going through.”

To be the best caregiver for your loved one, seek support and information from others. Caregivers who receive help report feeling less isolated, anxious and depressed. And, having a community of support can free up their time and help them maintain their physical and emotional well-being, which in turn makes them better able to care for their loved one.

“Some of the most important things to keep in mind while caring for a loved one is that it’s important to listen to them and give them a safe space, but also to have them listen to you and let them take care of you a little bit sometimes,” shared Kathryn.

Help for Cancer Caregivers is a unique collaboration of organizations with a shared goal of improving the health and well-being of the people who care for people with cancer. CancerCare has additional resources dedicated to helping you cope, including support groups, publications and podcasts. For additional help, reach out to one of our oncology social workers by calling 800-813-HOPE (4673).

 


Greenwich 5K Walk/Run for Hope Raises over $40,000 for Anyone Affected by Cancer

May 6, 2014

Top fundraiser Sophie Khanna

Dedicated CancerCare supporters laced up to raise more than $40,000 at the Second Annual Walk/Run for Hope at Greenwich Point in Greenwich, CT on May 4, 2014.

The community-based event brought together friends and families to walk or run in memory of those they have lost to cancer, honor survivors and support those who are currently facing the disease.

Top-fundraiser and advocate Sophie Khanna, age 14 of Greenwich, raised $10,685 for the organization. “I was looking for a run to do and I saw CancerCare,” said Sophie. “My grandma suffered from cancer. Luckily she survived it and I just want to help people around who suffer from cancer.”

CancerCare client and advocate Margie Benefico, of Stamford, began meeting with a CancerCare social worker after she was diagnosed with chronic lymphocytic leukemia (CLL) six months ago. After learning about the walk, she formed a team of 55 members called ‘The Lymphomaniacs’ and raised $5,410.

“From the first time I called CancerCare, they were very warm and welcoming. They helped me to talk things through – like getting a second opinion and tolerating the chemo. I hope to be involved with CancerCare for many years to come and to help others find the services that they gave to me.”

“CancerCare is there to provide free services to those dealing with a cancer diagnosis,” said Connecticut State Representative, House District 151, Fred Camillo. “I know from personal experience that facing this illness can be overwhelming, but an organization like CancerCare makes certain that you won’t have to do so alone.”

Walkers and runners of all levels and ages participated in the event. Visit www.cancercare.org/walkgreenwich to see the top fundraisers and race results and see the event photos at http://ow.ly/wyfJ4.

“Thank you to all of the dedicated walkers, runners and volunteers who made this year’s Walk/Run for Hope a huge success,” said CancerCare Connecticut Office Regional Director Sandra Tripodi, LCSW, ACSW. “As a native of Greenwich, it gives me great pleasure to be working with local supporters to raise awareness and funds for CancerCare’s free programs and financial assistance to anyone affected by a diagnosis of cancer.”

 


CancerCare Superstar Maddy Shares Her Story of Help and Hope

April 21, 2014

Alyssa and Maddy

Maddy Gold, 13, has quickly become one of CancerCare’s most inspiring advocates by sharing her personal cancer experience. As a result, she has made a remarkable impact on the lives of others.

Maddy began coming to CancerCare at the age of four to receive emotional support after her mother, Alyssa, was diagnosed with metastatic cancer. She found it to be a safe space to talk about all of the changes their family was facing.

“I remember that when my mom started losing her hair, I didn’t understand why. My social worker explained to me that the medicine in her body made my mom lose her hair, and as a young child, that made me feel better,” shares Maddy.

In December 2006, Alyssa passed away. Maddy and her younger brother continued visiting their social worker to learn how to cope with their loss and their father joined a weekly bereavement group.

“CancerCare was one of the only places where I could go to escape the sadness of my mom’s cancer and be myself – talking about my true feelings with my social worker who really understood and cared about me and my family and what we were going through.”

In honor of Alyssa, the Gold family formed the walking team “Hearts of Gold” to raise funds for CancerCare’s free support services. Maddy also serves as a volunteer at CancerCare’s New Jersey office and has raised $1,500 by selling awareness bracelets.

Maddy will share her powerful story at the CancerCare 70th Anniversary Celebration Gala on April 23. Learn how you can get involved and support this exciting event and help Maddy’s cause: http://community.cancercare.org/gala.

“My mom got so much support from CancerCare when she was sick and would be so happy that I continue to give back to help other people just like her.”

 

 


Should I Stay or Should I Go?: Young Adults as Long-Distance Caregivers

June 15, 2013

Young adults in their 20s and 30s can undoubtedly feel overwhelmed when a parent is diagnosed with cancer. Many have limited experience with caregiving, and may feel unprepared for their new role. And young adult caregivers who have relocated far from home to pursue a career or start a family may face even more challenges.

Ultimately, the question many young adults providing care from a distance grapple with is, “Should I stay or should I go?” It’s a difficult choice to make: Young adults may end up feeing guilty if they choose to “stay” in their current location, or feel obligated to “go” while making difficult sacrifices.

The decision to provide care from a distance or relocate closer to home to care for a parent often leads to feelings of uncertainty and isolation. For some young adults, relocation may not be financially feasible. Social and cultural demands to take an active role in caring for parents may also add feelings of pressure and stress. And caregiving, whether locally or from a long distance, can also drastically impact intimacy and relationships, as well as children and family life.

Young adults who must contend with competing commitments and responsibilities often feel that their busy lives are barriers to getting support. That’s why, for many young adult caregivers, and indeed anyone coping with a cancer diagnosis, online support groups are an ideal option for sharing difficult feelings with peers in a similar situation.

Professionally led, age-specific groups such as CancerCare’s Young Adult Caregivers Online Support Group offer a safe space for group members to share experiences and feel part of a virtual community of support. Online groups allow for flexibility, as members can share their thoughts and feelings and offer advice and support at any time from anywhere with an internet connection.

Many young adults caring for a parent with cancer find these groups to be incredibly rewarding experiences that help them define and make sense of their new role. CancerCare’s specialized services can ultimately reduce distress and enhance the coping of young adult caregivers as they consider whether to stay or to go.

Learn more about our free support services for caregivers and young adults. Start connecting with others online, over the phone, or in-person by registering for one of our support groups.

Author: Carly Mesavitz, LMSW, Oncology Social Worker, CancerCare

 


CancerCare Advocate Provides Hope for others Affected by Cancer

June 1, 2013

Maddy Gold sharing her story at the CancerCare Festival of Hope Gala

After being deeply impacted by cancer at such a young age, 13-year-old Maddy has become a courageous advocate for CancerCare’s free professional services available to anyone affected by cancer.

Maddy began coming to CancerCare for emotional support at the age of six after her mother, Alyssa, was diagnosed with metastatic breast cancer. “It was important for me to be at CancerCare, because if not, I would have let my nerves and feelings get the best of me,” explained Maddy. “My mom started losing her hair and got a wig. At first I didn’t understand why, but CancerCare once again came to the rescue. They explained to me about the medicine in her body and how it made her lose her hair.”

In December 2006, Alyssa passed away. Maddy and her brother continued coming to CancerCare to learn how to cope with their loss and their father joined a weekly bereavement group.

Determined to give back to the organization that helped her family through their most challenging times, Maddy dedicated her Bat Mitzvah project to providing hope to CancerCare clients. “Because of my experience, I know a lot about cancer. I wanted to contribute my time to talking to or working with children,” she said.

She currently volunteers at the CancerCare New Jersey office each week helping to prepare for the annual Healing Hearts Bereavement Camp. One of her passion projects involves creating a memory lane path where the children can add their fondest memories of a lost loved one. She has also raised over $1,500 by selling CancerCare bracelets and collecting donations through her family’s “Hearts of Gold” walking team.

Maddy continues to inspire CancerCare staff and clients each day with her desire to provide others with help and hope in the face of cancer.


Preventing and Managing Caregiver Burnout in Young Adults

April 23, 2013

Did you know that as a young person, you are especially susceptible to high levels of stress when serving as a caregiver? Navigating your own life, starting a family, developing a career and a variety of other responsibilities can impact your ability to provide care for another person. There are many helpful strategies as you approach this new role that may help to ease the burden and prevent or manage caregiver burnout.

Define your role as caregiver:

Identify your role and responsibilities. Are you serving as a primary caregiver or a casual friend/acquaintance? These two types of roles are equally important.  Your responsibilities can be flexible, so give yourself permission to modify as circumstances change.

Set guidelines and limits. How much and how often are you willing to give? Create a workable schedule and give yourself a day off or a “vacation” from caregiving. Define your non-negotiables (i.e. not moving in with the patient to provide care, or not taking time off work).

Consider alternate options for caregiving. Who else can provide practical and/or emotional support? What respite care is available (e.g., home health aide, visiting nurse)?

Prioritize responsibilities. What is most important to the patient? To you?

Getting acquainted with your new role:

Read literature. Know what types of literature are best for you. Do you prefer concrete medical information or literature that is more emotionally supportive?

Find your role in the medical context. Consider decisions about becoming a healthcare proxy or a power of attorney. Understand the legal impact of these roles and discuss with the patient early on. Will you attend appointments?

Talk to healthcare professionals. Let doctors and the entire health care team know who you are, what your role is and how they can reach you. Hospital social workers or patient navigators can be helpful advocates for you and the patient.  Ask questions regarding what to expect throughout the process, both physically and emotionally.

Understanding your relationship with the patient:

Acknowledge differences between the caregiver and the person with cancer. These differences are to be expected and it is normal to disagree. Reflect on what your relationship was like before cancer. A diagnosis does not necessarily change someone’s personality or your relationship, so it is important to manage your expectations. Cancer can intensify problems that were there before. Plan to seek support to help sort through what issues are cancer-related and what issues are not. Ask, don’t assume, how you can be there for them–communication is essential.

Helping other people “get it” and managing expectations. Inform others about your role as caregiver and ask for help. Let them know how this change is impacting you and how they can help meet your needs. Re-telling the same story can be exhausting. Simplify by sending a mass e-mail or utilizing resources like www.mycancercircle.org. Some people are good at practical tasks while others can offer emotional support–explore the abilities of others versus your expectations of them.

Finding “me” time. Maintain commitments and activities that pre-dated your caregiving responsibilities. Create and maximize alone time (e.g., take walks, practice breathing exercises) and take care of yourself (get recommended sleep, spend time with loved ones, seek counseling).

Finding what works for you. Remember that there is no right way to be a caregiver. Allow for a trial and error period and make sure to give yourself a break as soon as you need it.

Author: Carly Mesavitz, LMSW, Oncology Social Worker, CancerCare

 


Free Support Groups for Young Adults

September 14, 2012

Young adults ages 18-39 affected by cancer may find their goals sidelined. A cancer diagnosis may mean putting off the pursuit of a degree, advancing up the career ladder, pursuing a relationship, or starting a family. Being diagnosed at this age can be particularly difficult for young adults who may have previously believed that serious illnesses like cancer happen mainly to older people.

It is important for young adults facing cancer to know that they aren’t alone. The professional oncology social workers at CancerCare can help.

Among CancerCare’s free services for young adults, we offer online and face-to-face support groups where young adults can share their concerns with other young adults and get emotional support. We offer groups for people with cancer and caregivers, and are also currently recruiting participants for a support group for post-treatment survivors to be held at our national office in New York City. All support groups are led by a licensed oncology social worker.

Two young adults who came to CancerCare for support are Jonah and his wife, Kathryn, of Brooklyn, NY. Jonah was diagnosed with stage IV melanoma at age 28. His wife, Kathryn, faced the challenge of caring for Jonah while maintaining her own responsibilities at her job.

CancerCare Clients Jonah and Kathryn

Both Kathryn and Jonah participated in our free support groups, where they shared their concerns and received emotional support from other young adults. For both of them, their support groups helped them find strength and resolve they didn’t know they had. They added that CancerCare equipped them with tools to cope with the challenges of facing cancer.

Read more about Jonah and Kathryn and watch short video clips of them sharing about their experiences.

View all of our free services for young adults coping with cancer, which include counseling, education, and financial assistance.

 


Online Support Groups for People Coping with Cancer

July 26, 2012

CancerCare’s free online support groups connect you with others in a similar situation, helping you find support no matter where you live. Our online support groups are led by professional oncology social workers and are password-protected. Once members complete our registration process, they can participate 24 hours a day, 7 days a week.

We offer over 20 different support groups targeting specific populations, such as people in treatment for cancer, people who are post-treatment, caregivers, and people who have lost a loved one.

A few support groups that are actively seeking new members include our Brain Tumor Caregiver Support Group, Metastatic Breast Cancer Patient Support Group, and People Who Have Lost A Loved One Support Group.

Even if we don’t currently offer a group for your specific diagnosis, we do offer general groups for men with cancer and women with cancer.

All support groups are completely free of charge, but registration is requiredLearn more.


Practical Tips for Young Adults Coping with Cancer

May 17, 2012

While many people in their 20’s and 30’s are focused on finishing their education, starting their careers, and finding a partner, young adults affected by cancer may face different concerns, such as where to get the best medical care or how to pay for expensive treatments.

Two new CancerCare fact sheets address the unique challenges of facing cancer as a young adult.

“Coping with Cancer as a Young Adult,” addresses topics that include preserving fertility, disclosing a diagnosis to an employer, and managing physical changes. “Young Adults as Caregivers,” provides helpful tips on caring for a loved one with cancer while also caring for yourself.

Both of these fact sheets can be ordered through our website, and are available completely free of charge.

Along with our publications, we offer free, professional counseling for young adults, including online and face-to-face support groups, moderated by a CancerCare oncology social worker. Learn more about how we help young adults affected by cancer.