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.”

 


Lisa’s Story of Help and Hope

November 10, 2014

After Lisa was diagnosed with breast cancer in February 2009, she turned to her reiki practice, a Japanese technique for stress reduction and relaxation that also promotes healing, to help make sense of it all.

“When I was initially told I that have cancer, of course, I was shocked. I turned white in the doctor’s office,” remembers Lisa, a certified reiki master and holistic practitioner. I immediately went into survivor mode. It was surreal, bizarre.”

Lisa soon underwent a lumpectomy and radiation and credits her spiritual tools for helping her through the difficult time. “I don’t believe in giving cancer power. I just called it the ‘C’ and I’d imagine Pac-Man eating away all the diseased cells out of my body. I had to do a lot of spiritual work on that.”

At times, Lisa found herself overwhelmed by her diagnosis and subsequent treatment. “I felt like I was getting lost in the shuffle and had to be my own advocate. It was hard to navigate all of this. It was like a full time job – getting a second, third opinion. The key to it was listening to my intuition as my guide, as it always leads me in the right direction.”

After learning that many of her medical bills wouldn’t be covered by insurance, Lisa turned to CancerCare. “I couldn’t believe that I was being hit with all of these bills while I was still going through treatment. CancerCare guided me in the process of receiving financial assistance. They really gave me a lot of tools that helped me and for that I’ve been so grateful.”

Lisa always knew that she would give back to those who helped her one day. She began putting her skills as a reiki master to use for a greater good. Each October, for the last three years, Lisa has donated her reiki income to CancerCare’s free support services. She also uses her healing skills to perform reiki on people going through cancer treatment. “Reiki is gentle but yet powerful. It gave me hope, inner strength and released lots of anxiety and stress.”

“I feel blessed that I came across CancerCare. They helped me when my insurance company failed me and left me with a huge portion of the bills. What I received, no words can describe.”

When Lisa was previously diagnosed with chronic fatigue and immune dysfunction syndrome (CFIDS), which has no cure, she was led to find alternative ways to heal. Since that time, Lisa has regained her health and strength and has been dedicated to healing, teaching and empowering others with cancer or any other type of illness. To learn more about Lisa’s story, visit her site.

 


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

 


Helpful Resources Available in Time for National Family Caregivers Month

November 3, 2014

Kathryn and her husband Jonah

 

 

 

 

 

 

 

 

 

 

 

 

 

As more patient care is happening within the home, caregivers are becoming increasingly responsible for providing ongoing emotional and practical support. However, fewer than 15 percent of caregivers seek professional help in addressing their own physical, emotional and financial needs. In celebration of National Family Caregivers Month, CancerCare encourages caregivers to seek out support.

Helpful resources are now available to address the unique needs of those caring for a loved one. A new online tool called Help for Cancer Caregivers provides personalized information to help monitor, track and manage the challenges each person faces in their caregiver role. For example, if individuals feel overloaded by their caregiver responsibilities, the web tool responds with information on how to cope and talk about overload with others.

“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,” shares Kathryn, a cancer caregiver. “I was having a very hard time socially because 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.”

National Family Caregivers Month is an opportunity to advocate for those who provide care for loved ones. It is also a time to advocate for support and to provide education and resources for those playing this vital role.

Help for Cancer Caregivers is a collaboration of organizations with a common goal of reducing family caregiver distress: Caregiver Action Network, CancerCare, Indiana University, Johnson & Johnson, Michigan State University, Millennium: The Takeda Oncology Company, Onyx Pharmaceuticals, an Amgen subsidiary, and WellPoint. Help for Cancer Caregivers continues to lead and innovate in the field of cancer caregiving.

CancerCare has additional resources for caregivers including support groups, counseling services, podcasts, educational materials and more. 

 


Palliative Care Inches Toward Standard of Care

October 29, 2014

The Inaugural Palliative Care in Oncology Symposium made its debut in Boston on October 24, 2014. Jointly sponsored by the American Society of Clinical Oncology (ASCO), American Academy of Hospice and Palliative Medicine (AAHPM), American Society for Radiation Oncology (ASTRO) and the Multinational Association of Supportive Care in Cancer (MASCC), this marks the first major meeting of cancer specialists and clinicians who focus on relieving symptoms.

Palliative care is specialized medical treatment that focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness. It improves quality of life for both the patient and the family.

Traditionally, palliative care has been accessed only toward the end of life. Many recent studies however, have shown that introducing it earlier into cancer patients’ care plans results in improved quality of life, living longer and lower medical costs. Patients and families may resist palliative services because they associate the term with hospice and end of life. This problem of semantics often results in patients not being adequately treated for debilitating symptoms such as pain, nausea and fatigue.

It’s time to correct these misconceptions and help patients access the care they need, be it medical, emotional, spiritual, financial or otherwise. Through palliative care, people affected by cancer will benefit from improved symptom management, reduced stress and overall, a better quality of life.

Want to know more? Visit cancer.gov or cancer.net for additional resources.

Our guest blogger is CancerCare Chief Executive Officer Patricia J. Goldsmith.

 


Financial Assistance Available for People with Pancreatic Cancer

October 27, 2014

 

CancerCare recently announced a new national grant, generously provided by Celgene, available for people diagnosed with pancreatic cancer.

The “CancerCare Get You There” program will assist both men and women with transportation costs associated with their cancer treatment. Applicants must be diagnosed with pancreatic cancer and meet additional eligibility guidelines. To apply or learn more, call 800-813-HOPE (4673).

“A cancer diagnosis is a very difficult time for many families financially and costs such as transportation can oftentimes prevent our clients from receiving proper treatment,” said CancerCare Director of Patient Assistance Programs Jane Levy. “Thanks to Celgene, these individual grants will help to alleviate some of the financial stress for people coping with pancreatic cancer.”

CancerCare offers additional services for anyone affected by pancreatic cancer, including support groups, counseling, podcasts and educational materials.

 

 


A Conversation with CancerCare CEO Patricia J. Goldsmith

October 16, 2014

 The latest edition of  The ASCO Post features a conversation with CancerCare’s CEO Patricia J. Goldsmith. In the article, Goldsmith shares her personal story and her exciting vision for the organization. Please enjoy a few of our favorite excerpts from the article.

Our CEO’s Unique Perspective

Eleven days before Patricia J. Goldsmith, joined CancerCare as its CEO last May, she received the unexpected news that she had early-stage colorectal cancer. While the diagnosis was shocking, Ms. Goldsmith said it gave her a unique perspective on what it means to have this serious disease and a greater understanding of the emotional and financial impact cancer has on the more than 170,000 people nationwide who turn to CancerCare each year for support.

“Getting my cancer diagnosis made the work we do at CancerCare very personal,” said Ms. Goldsmith. “Having cancer changed everything, including my outlook on what is important in life. I think getting the diagnosis just before starting my new position was meant to be, because it gave me an even greater appreciation of the important services the organization provides to people affected by this disease.”

About the Organization’s Vision

My overarching vision is to help the organization further expand its mission to provide support to anyone who has experienced a cancer diagnosis or been touched by cancer in some way.

About the Future of CancerCare

We are in a moment of transformation as an organization moving from what we currently are to what we will be in the future. Our ultimate aim is to be the most active support and advocacy organization in health care providing the highest-quality services to improve the lives of those affected by cancer.

To read more of the conversation, visit The ASCO Post.

 


Caribou Coffee Partners with CancerCare to Support Anyone Affected by Breast Cancer

October 1, 2014

For the third year, Caribou Coffee has partnered with CancerCare for a month-long promotion during which 10 percent of all Amy’s Blend Collection purchases benefit CancerCare’s free support services. The Amy’s Blend promotion honors Caribou Coffee’s original roastmaster Amy Erickson who lost her battle with cancer in 1995.

From September 27, 2014 to October 31, 2014, Caribou Coffee will donate 10% percent of all Amy’s Blend Collection purchases directly to CancerCare with a minimum of $100,000 donation to CancerCare.

“There are more than 2.8 million women in our country who currently are battling or have battled breast cancer,” CancerCare CEO, Trish Goldsmith. “We are thrilled Caribou Coffee is joining us again this October to support and uplift our strong community of patients, survivors, families and friends.”

Caribou Coffee’s original roastmaster Amy Erickson

To learn more about Caribou Coffee Amy’s Blend, visit Amy’s Home.

 


CancerCare Awarded $1.5 Million Grant from Susan G. Komen

September 30, 2014

 

CancerCare has received a $1.5 million grant to assist people diagnosed with breast cancer. The generous grant will support Linking A.R.M.S., a CancerCare program in partnership with Susan G. Komen. Linking A.R.M.S. provides financial assistance for breast cancer patients for hormonal and oral chemotherapy, pain and anti-nausea medication, child care, transportation, lymphedema care and durable medical equipment.

“We are tremendously grateful for the continued support of Susan G. Komen,” said CancerCare CEO Patricia J. Goldsmith. “This substantial grant will provide help and hope to thousands of people diagnosed with breast cancer during what may be one of the most overwhelming times in their lives. Costs such as transportation and child care can oftentimes prevent our clients from receiving proper treatment and, thanks to Susan G. Komen, this will now be less of an obstacle for thousands of individuals.”

“A breast cancer diagnosis is a life-altering event, and while patients are making difficult decisions about their medical care, day-to-day needs like childcare and transportation can be equally challenging. Last year alone, CancerCare provided direct financial assistance to 1,356 breast cancer patients undergoing treatment. We’re pleased to again award funding to this important program to allow them to continue this work,” said President and CEO of Susan G. Komen, Judith A. Salerno, M.D., M.S.

Those interested in learning more or applying for financial assistance can visit our website or call 800-813-HOPE (4673).

“Words cannot express the appreciation I have for the financial assistance I have desperately needed,” shares Kimberly, a recent Susan G. Komen grant recipient. “What a huge relief to know there is help. What a privilege it is to know that CancerCare does care. A huge weight has lifted from my shoulders and my heart.”

 


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