Family Conversations about Cancer

December 2, 2014

Cancer is a difficult subject to talk about, and many parents coping with a diagnosis may try to avoid the topic in fear that they will upset their children. What to say about cancer, how to say it, and how much information to share are common concerns.

Through my work at CancerCare, I have found that the use of art therapy can help families to communicate about cancer.

As one example of a creative project that can bring families together, CancerCare, with a sponsorship from Bayer, recently developed a free at-home activity kit to help start these discussions, called “Pillow Talk: Conversations about Cancer.”

Families who are supporting a loved one with cancer can order a free Pillow Talk Care Package that includes a hands-on, pillow-decorating project as well as materials that will help initiate those often-difficult conversations. With this care package, families can bring a blank pillow to life—it has a sleeve for pictures or special notes, fabric markers, and decorative materials that lets families’ creative expression drive the discussion.

CancerCare client Susan, of Connecticut, was faced with figuring out the best way to start the difficult cancer conversation with her 5-year-old son after her husband Chris’ diagnosis of stage 4 colon cancer. Susan and her son sat together and colored the pillow that now features her son’s favorite things—superheroes, rainbows, planets, and rocket ships. On those long days when Chris is away at treatment, Susan’s son pulls out the pillow and reads the special messages his father left for him in the pouch.

 

Guest blogger Sandra Tripodi, MSW, LCSW, CancerCare Senior Director of Community Engagement

 

 

 

 


Xiomara and Jaeden’s Story of Help and Hope

November 14, 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.”

 


CancerCare Oncology Social Worker Pens Inspirational Book for Families

November 5, 2014

Communicating with a child whose parent has been diagnosed with a chronic illness can be both confusing and overwhelming. As CancerCare’s Healing Hearts Program Coordinator, Claire Grainger, MSW, LCSW works closely with families to help navigate these challenges.

Based on her professional experience and expertise, Claire has written the recently published book “My Daddy Sits Upon a Star.”

According to the publisher, the book follows the life of a child whose father has been diagnosed and later dies of a chronic illness. The story shares how, even though the child misses his father’s physical presence, he is able to develop a way to maintain an everlasting connection to his father’s spirit.

Claire was first inspired to write the story after forming a lasting bond with her neighbor, Joey. At six years old, Joey experienced the loss of his father to pancreatic cancer, and Claire and her husband quickly stepped in to help the family cope.

“Joey is an only child and had no immediate family in the area. His mother, Kathy, is incredibly independent and stepped outside of her comfort zone to ask if we could help watch her son one night each week while she worked,” said Claire. “We became family in no time and forged a lasting relationship with love. We are connected and are there for each other.”

Claire penned the story and began reading it to Joey during their time together. “He loved the book. I wanted him to think about his dad in his everyday life and carry on the amazing bond that they shared. I wanted him to look out into the universe and still see his father.”

Joey, now a 22-year-old college student, has volunteered for the last three years at CancerCare’s Healing Hearts Family Bereavement Camp and other CancerCare fundraising events. “I think he sees himself in the children at the camp because he has been in their shoes. He wants to show them that he’s still connected to his dad and he’s ok.”

“This experience has taught me that even from a really difficult time, some really poignant and meaningful events and relationships can evolve,” said Claire. “This is a book for anyone who has suffered a loss. It can bring peace in knowing that you will never forget your loved one and that you can let them continue to inspire you.”

CancerCare provides free, professional support services for people who have experienced the loss of a loved one to cancer, as well as grief and loss information and additional resources.

Claire Grainger, MSW, LCSW

 


Sue’s Story of Help and Hope

September 25, 2014

Sue with and her children Emily and Andy

Sue began advocating for emotional support after her husband, Rob, advanced to stage 4 melanoma in 2009. He’d been at stage 3 for almost three years, long enough for his doctor to be optimistic and for the family to feel more confident about the future. The news, received in the emergency room where he’d been taken in response to a seizure, came as a huge blow. In the weeks and months that followed, Rob desperately wanted counseling to help him cope.

“I wish I’d known about CancerCare sooner,” said Sue. “I spent whole days identifying and taking Rob to psychologists within his health plan, but we found that none of them understood his emotional state.”

She was ultimately referred to CancerCare for her own support. “When I finally learned about the CancerCare phone and online caregiver support groups, I seized them like a lifeline and was rewarded with both coping skills and lifelong friendships.”

But Rob, by then very advanced, could not manage counseling by phone. When he passed away in 2010, Sue again sought out resources to help her and their children Emily and Andy, then ages six and three, process and heal through the difficult time. That’s when she learned the CancerCare New Jersey office was nearby. She says it was life-changing.

Sue began receiving in-person bereavement counseling. She and her children also attended the Healing Hearts Bereavement Camp, picnics, holiday parties and other activities.

Andy at CancerCare’s Healing Hearts Bereavement Camp

“I think bereavement therapy is important for both the kids and the surviving spouse. The CancerCare family program was incredibly supportive for us. We benefited from group activities where we all shared our experiences and were guided by the counselors,” says Sue. “Emily told me several times it meant a lot that she could talk with and play with other kids who had also lost a parent. It was hard for her to interact with kids at school who didn’t understand, and she felt removed from them; different. I think it gave Andy words to express his loss in preschool.”

For families facing similar challenges, Sue suggests taking time to be together as a family and create special memories together. She also stresses the importance of managing the continuum of care, asking others for help when necessary, and having a sense of humor even during the hard times. “It’s critical to hang together as a family unit. At the same time, don’t be afraid to ask your friends for help and to accept it! And whenever things get stressful, try not to lose your sense of humor and perspective.”

“We have healed and grown, basking in the warmth and support of CancerCare’s wonderful, caring staff and the ability to share with other families in similar situations. CancerCare continues to be part of our lives as we move into a new role, drawing on our experiences to help other families embarking on this journey.”

In Rob’s honor, Sue formed Team Chevrier to raise critical funds for anyone affected by cancer in the CancerCare Walk/Run for Hope in Paramus, New Jersey. Learn more or donate to Sue’s team by visiting http://community.cancercare.org/robswalk


O’Neill’s Irish Pub Golf Outing Raises $175,000 for People Affected by Cancer

September 2, 2014

Ollie O’Neill moved to the states from Dublin in 1995 and pursued his dream of bringing the Irish pub culture to his new hometown, Norwalk, CT. He opened O’Neill’s Irish Pub and Restaurant on St. Patrick’s Day of 1999. Not only did he want to provide authentic food and drinks to the community, Ollie also wanted make a lasting difference in the lives of people affected by cancer.

Ollie O’Neill at this year’s event.

“I initially wanted to do something for CancerCare because my sister was diagnosed with leukemia when she was nine,” said Ollie. “We all felt that this was a cause we wanted to help because CancerCare was right here in town and we’d heard about some of the great services. I feel that if we had had these services when we found out about my sister’s diagnosis, it would have helped quite a bit.”

In 2007, O’Neill’s Irish Pub established the first annual Golf Outing. Ollie and his team of supporters have raised an astonishing $175,000 over the past 15 years.

“We figured it was a good way to get the community involved and give back. Get out there and play, eat, drink and have fun for a good cause,” said Ollie. “It is amazing. All we do is host the event and invite people to participate. They just want to contribute. I’ve sold out every year.”

“The event that O’Neill’s Pub and Restaurant hosts each year to benefit CancerCare makes a discernible difference in the lives of people affected by cancer in the Norwalk community and beyond,” said Regional Director of the CancerCare Connecticut Office Sandra Tripodi, LCSW, ACSW. “Whether it is a person who is in need of a wig, a child who is struggling to make sense of what cancer means in their family, or someone in need of financial assistance to address treatment related barriers, we depend upon our community of support to make our free services available.”

Are interested in making a difference in the lives of people facing cancer? Get your friends, family members, co-workers, neighbors, and community involved in supporting CancerCare‘s free services through Team CancerCare. There is no limit to the kinds of events you can organize.

 

 

 


Susan’s Story of Help and Hope

August 14, 2014

The family at Henri’s 5th birthday party

Susan faced many challenges after her husband Chris was diagnosed with stage 4 colon cancer. One of the greatest was figuring out the best way to talk about cancer with their five-year-old son Henri.

“Henri knows that something is wrong and I’m sure he knows more than he is able to articulate. He knows that daddy is sick,” shares Susan.

After searching online, Susan called CancerCare in search of resources to help Henri understand and cope. An oncology social worker suggested The Comfort Pillow Activity to help the family communicate with one another and feel more comfortable talking about cancer. The Activity includes a pillow that can be customized and designed to bring a child comfort, as well as a booklet and additional resources that help to initiate therapeutic conversations.

“CancerCare and their resources have been so helpful. Chris and Henri sat on the floor together, spread out all of the kit materials and colored on the pillow. It was a really great exercise for Chris – a really special bonding moment and it’s something they’ll always have together.”

The pillow features Henri’s favorite things including superheroes, rainbows, planets and rocket ships. “Henri sleeps with the pillow every night. He traced hearts on one side and wrote ‘Henri, Dad and Mom’ in each of the hearts.”

Sue feels the activity has brought the family closer and has allowed them to have difficult conversations about cancer. “When Chris has to leave for chemotherapy, he is oftentimes gone before Henri wakes up and doesn’t return until after Henri goes to bed. On those days, Henri can pull out the pillow and know that he is loved and can read the special message on an enclosed heart from his dad.”

 

 


Serpil’s Story of Help and Hope

July 24, 2014

After her husband Lance was diagnosed with advanced pancreatic cancer at age 36, Serpil struggled with how to help her young children cope. “Lance was diagnosed when my daughter Seylan was five and my son Cole was two,” shares Serpil. “The relationship that they had with him was unbelievable. They were so close, so I knew that I needed to find them any type of help. I knew I needed to move and move fast.”

Their daughter Seylan began attending face-to-face counseling sessions with an oncology social worker at CancerCare’s New Jersey office located close to home. “She absolutely connected to the social worker. My husband also needed support and participated in counseling sessions by phone.”

Four years after his diagnosis, Lance passed away. Serpil once again set out to find additional resources to help her children process their grief. “CancerCare was always in the back of my mind. There was a comfort level there, so I reached out when I heard about the Healing Hearts Bereavement Camp.”

Serpil and her children attended CancerCare’s Healing Hearts Bereavement Camp during the summers of 2013 and 2014. The Camp, located at Malibu Dude Ranch in Milford, PA, offers a healing retreat for families coping with the loss of a loved one to cancer. The weekend combines fun activities such as swimming and horseback riding with therapeutic grief activities. The annual free retreat is made possible by dedicated supporters at Eisai.

Releasing a butterfly in Lance’s memory at the Healing Hearts Bereavement Camp

“What really touched me was seeing so many kids, who all shared a similar journey, in one place where they could just be free,” recalls Serpil. “I found the camp to be a refuge for them – a happy place. The kids stay in touch through social media and it gives them a sense of community. Very few of their classmates have had that same experience, so it helps them to have peers that understand.”

The family is now focused on healing by keeping Lance’s memory alive. “Every day presents new challenges and new hopes. You learn to live with the loss and you find comfort in memorializing a loved one. I’ve found it important to embrace amazing organizations like CancerCare. They serve as an outlet and an opportunity to connect and to remind us that we are not alone.”

 

 

 


Families Remember Loved Ones at CancerCare’s Healing Hearts Bereavement Camp

June 26, 2014

 

Thirty families recently joined together to spend the weekend at CancerCare’s Healing Hearts Bereavement Camp – a retreat for those coping with the loss of a loved one to cancer. The camp combines fun activities such as swimming and horseback riding with therapeutic grief activities.

“The camp is a place where the families can come together and not feel different. They meet others who have experienced a similar loss and they don’t have to explain anything to one another; they can just come together and have fun,” said Kathy Nugent, MSW, LCSW, CancerCare director of social service. “There are a lot of tears, but there is also so much laughter. They’ve all found new friends – people that understand. Our hope is that they all made a lasting connection.”

This year’s camp featured a butterfly theme, focusing on metamorphosis and healing. Families were given the opportunity to create butterfly collages honoring their loved ones and ended the weekend with a ceremonial butterfly release.

The sixth annual camp was held at Malibu Dude Ranch in Milford, PA from June 13 through June 15. The free retreat was made possible by our dedicated supporters at Eisai.

You can view more photos from the Healing Hearts Bereavement Camp or watch a video of the song, “Fly Butterfly Fly,” written and performed by Meaghan Farrell, Andy McNamara and teens at the camp.

 


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.”

 

 


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.