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Family & Patient Support

Hope after Loss

The loss of a child is so unnatural in our society that many parents feel utterly alone in their grief. Since it is such a rare occurrence, most people have no idea how to help or even engage with a bereaved parent. As part of our commitment to support families devastated by childhood cancer, CURE brings these parents together every year at our Weekend of Hope and Healing. During this weekend, families celebrate the lives of their children while attending presentations and workshops designed to assist them in their grief process.

But it is so much more than that. Each year, we hear of new ways lives have been touched as parents of different races, religion, income levels, and ages come together and realize they are not alone. Last month, parents of 51 precious children gathered together to move forward in their grief. Here is just a taste of what they discovered.

Jonathan Day lost his son, Owen, in September of 2017 and found peace during the weekend.

“Whenever I am in a normal group of people, I can stop a conversation or destroy the mood by just talking honestly about my children,” he explained. “But here, I sat in a room with people who know exactly what I went through. I got to talk about Owen without making anyone feel uncomfortable. I found that soul-settling.”

Jonathan also took comfort in hearing that other men share many of the same feelings with which he has struggled.

“The rational side of me understands that cancer was out of my control,” he said. “But the emotional part of me still holds onto the feeling that I failed as a father. My principle job was to protect Owen and I didn’t. It was very powerful to hear that there are other men dealing with that same feeling. I didn’t feel isolated when I was in that room.”

Also in attendance was Trish McKay, who lost her nine year old daughter, Kate in April of last year. She found meeting the parents and learning about their children particularly meaningful.

“I got to make some new friends, share our stories, and learn all about their children,” she said. “And that was the best part, getting to know some of Kate’s new neighbors! I am always wondering about the new things she is doing now in heaven, and for once, I know a little bit of who she is probably hanging out with! They are really cool kids. Morgan, the sassy three-year-old who loves glitter and purple. Alyssa, the sweet fourteen-year-old who danced at her school. Anna-Charles, the six-year-old fashionista who sang Meghan Trainor songs for the nurses. Kian, the two-year-old who charmed the nurses and had an afro bigger than his head.”

We recognize that everyone grieves differently and there is nothing we could ever do to completely alleviate a parent’s grief. Grief is a process and we hope the weekend helps to move people forward wherever they are in that process. When we hear comments like those of Benji Hollis, we are assured that the weekend was meaningful.

“Our daughter, Anna Charles, passed away 4 months ago after a bout with Acute Myeloid Leukemia,” Benji relayed. “Our emotions were, and still are, too raw and we weren’t quite sure if we were ready to attend Hope and Healing. But attending was the best decision we’ve made. It was helpful to meet other parents who could relate to the pain and suffering that we are enduring. It didn’t make our pain go away, but it was comforting to know that we aren’t alone. We got the chance to really get to know some of the other parents, and we look forward to staying in touch with them, as well as seeing them next year. There was definitely a healing factor to the event that we didn’t have before we arrived. We showed up with hope and left with even more.”

 

If you’ve experienced loss, please note the common theme running through all three parents: community. There is something significant about sharing your pain with other people who understand. Whether online or in person, we urge you to seek out others whose similar experiences can help you move forward in your grief. There is hope after loss.

Coping Ahead for the Holiday Season

When you have a child diagnosed with cancer the upcoming holiday season will not be typical of the holidays you have experienced in the past. It is important and extremely helpful to acknowledge that simple fact ahead of time, so you can cope ahead. Coping ahead helps prevent us from being blindsided by our grief.

You can cope ahead by anticipating which situations may be difficult and preparing what you will say or how you will act in these moments.  This may reduce your vulnerability to intense emotions and help you manage your emotions most effectively. The following tips will help you cope ahead this holiday season.

Anticipate Heightened Emotions

For many of us, this time of year presents as a dialectic. A dialectic teaches us that two things that seem like opposites can both be true and exist at the same time. While the holiday season may be a time of joy, celebration, and getting together with loved ones, it can also bring about intense emotions such as anger, sadness, and irritation. Allow yourself the full range of these emotions without avoiding your feelings. Tell yourself that it is understandable that you will feel many emotions and give yourself the permission to respond to those emotions as you see fit. Appropriate responses may include declining an invitation to an annual function or pushing through when there may be positive outcomes to being with people you love. Plan how you want to spend your time and with whom. Coping ahead may be reviewing your holiday schedule and determining which traditions and gatherings are important to you and your family and which ones you plan to decline or eliminate this year. Coping ahead would also include preparing and practicing your response to invitations. For example, you may simply decline an invitation. No further explanation is required.

Set Realistic Expectations

Give yourself a break this year. Cope ahead by asking for help. If you usually host during the holidays, ask someone else to take over this year. Let friends and family know that you and your family may not attend everything this year and/or may leave early if things feel too stressful. Discuss with your family ways that the holidays may be different for everyone this year.

Take Care of Yourself

Cope ahead by making sure to plan time for self-care. Taking care of our physical, emotional, and spiritual self will help us be more resilient during the holiday season. Good self-care also protects us from increasing symptoms of depression and anxiety. Practice healthy eating, regular exercise, good sleep, hygiene, prayer and/or mindfulness practices, and appropriate medical check-ups.

Self-Soothe and Distract

Plan times when you can take a break from the stress of the holidays. Cope ahead by making a list of activities that will distract you, even momentarily, from the realities of treatments and the expectations of the holidays. This list may include distractions such as a movie, coffee with a good friend, or listening to your favorite music. A self-soothing list may include a run, massage, or a hot bath. Cope ahead by pre-planning and scheduling these activities; otherwise they will not happen regularly.

Seek Help

Cope ahead by researching and understanding the signs of depression. Promise yourself that you will reach out for help if you see these signs during the holidays. An excellent way to cope ahead is to research and know where you will go or who you will call if you recognize depression symptoms. Discuss this with your spouse or a close family member or friend and hold each other accountable. https://curechildhoodcancer.org/partners-in-caring-counseling-guidelines/

Recognize the Good

Coping ahead to help increase your resilience may include naming three things that went well at the end of each day. Another option may be to list three things that you are grateful for each morning. Including the whole family in this practice may help with surviving the holiday season and who knows, it may become a new family tradition.

 

Transition: How to Successfully Journey Forward

by Elizabeth Record DNP, Mary Batcha RN, and Lillian Meacham MD

Childhood cancer survivors are challenged with many transitions of care in their journey after a cancer diagnosis. First, they transition from a healthy child to a child with a cancer diagnosis. Then they move from a child with cancer on treatment to a childhood cancer survivor who has completed treatment. And finally, they transition from a childhood cancer survivor to an adult survivor of childhood cancer. One of the most challenging transitions for many childhood cancer survivors and their families is the transition from pediatrics to adult based health care. For some survivors, this transition is due to an upper age limit at a pediatric healthcare system, and for others it is due to a geographic relocation for college studies or a first job. It is essential for survivors to prepare to journey forward as young adults who can navigate the adult health care arena.

Below are some suggested strategies to ensure successful transition:

  1. Start early to prepare for this very important transition. Survivors should talk to their pediatrician and their pediatric survivor team. Planning ahead of time, communicating with the current and future healthcare teams, and advocating for their healthcare needs are all very important initial steps.
  2. All survivors should have a summary of the treatment they received. This is typically called a Survivor Healthcare Plan (SHP). This is an important tool as it will outline the potential late effects associated with the individual treatment. It will also have a summary of past testing that has been done and suggest recommended future testing to assess any late effects that may occur as an adult.
  3. It is important for each survivor to have an understanding of the contents of their SHP as each survivor will be the person who advocates for their health and schedules the suggested testing.
  4. Survivors should identify and establish care with an adult healthcare provider for general healthcare needs or concerns. Additionally, survivors should share their SHP with the identified adult healthcare provider.
  5. If available, survivors should identify an adult survivor clinic that is familiar with the Children’s Oncology Group Long-Term Follow-Up Guidelines, which can be found on the COG website. This will assure they are updated periodically on any changes that may alter their SHP. Many adult healthcare providers are reluctant to provide care for cancer survivors as they are not familiar with the recommended guidelines. The Young Adult Survivor Clinic at the Emory Winship Cancer Center is a local survivor clinic focused on long term survivorship care.
  6. Maintain insurance benefits. Most survivors can stay on their parents’ insurance until age 26. However, if that is not possible, it would be important for each survivor to reach out to their social worker or a financial counselor who may be able to assist them as they strive to obtain insurance benefits.
  7. Register for Cancer Survivor Link. This is a password protected, secure, patient-controlled website designed for survivors and providers that will allow each survivor to learn about survivorship, share their personal health information with each of their healthcare providers, and store their Survivor Healthcare Plan. Registration is available on our website.

In Atlanta, patients under 21 years of age can be seen in the Aflac Cancer Survivor Clinic (404-785-1717). At age 21, patients are transitioned to the Young Adult Survivor Program at the Winship Cancer Institute at Emory. The contact for this program at Winship is Mary Batch RN (404-778-3473) or mary.m.batcha@emoryhealthcare.org.

 

 

Legacy of Love

As we sat down with Arlena Pou, our intention was to learn about last year’s Legacy of Love Day, which was the first she had attended. In the end, we learned much more about her son, Herbert, than we ever did about her experience. And that’s okay – because even nine years out, some things just need to be said.

Herbert Shaw, Jr was nineteen years old when medulloblastoma took his life on February 10, 2008. He was a drum major in his high school marching band – a popular boy who loved church and shared his gift of music wherever he could. He was a thoughtful and kind young man who left his mother a mission to grant scholarships to brain tumor survivors.

His loss also left a void in Arlena’s life that she knew she couldn’t fill.

“You don’t get over this,” she said firmly. “I don’t expect to ever get over it and I don’t expect anyone to understand that I won’t ever get over it. In a way, I don’t even want to get over it because I refuse to forget my child.”

Arlena attended CURE’s Annual Weekend of Hope and Healing several times and there she found a community of support. But as years went by, her stage of grief was different than many of the parents who had so recently lost their children. When she first heard about the Legacy of Love Day, she was slightly apprehensive but decided to give it a try.

“I needed to reconnect with my co-grievers who share in this community,” Arlena said. “It ended up being a day that revived me and kept me going. It is a safe place to share your heart or say nothing and take it all in.”

The goal of CURE’s Legacy of Love day is to continue to allow bereaved families to gather together in fellowship while celebrating and honoring the lives of their children in a more relaxed, recreational atmosphere. Families hear from a speaker whose topic is relevant to the grieving process of parents who are further along in their grief journey and the day culminates with a memorable candle lighting ceremony.

“The day was very fulfilling for me. I loved reconnecting with friends, sharing Herbert with them, and meeting others who have had this same experience. I also appreciated leaving with something tangible so I could always remember the weekend.”

Like Arlena, we understand that you will never get over the loss of your child. There will always be things to say. If you are further along in your grief journey, we would love for you to join us at CURE’s Legacy of Love in the future.

For more information, please email Lisa Branch at Lisa@curechildhoodcancer.org.

 

 

 

 

CURE’s Partners in Caring Counseling Program

20029-092-1024x1024At the heart of CURE Childhood Cancer is the desire to address the critical and urgent needs of families affected by childhood cancer. CURE recognizes that childhood cancer is an extremely difficult, traumatic diagnosis, in which treatment and outcomes put strain and stress on the entire family. To offer additional support, help and encouragement for families of children diagnosed with cancer, we connected with licensed counseling centers across the state of Georgia and launched CURE’s Partners in Caring (PIC) program in 2013.

The PIC program was designed to provide families’ access to professional counselors who understand how childhood cancer, and its experiences, can affect the psychological and emotional well-being of the entire family. Since the launch of the PIC program we have continually strived to break down barriers associated with accessing counseling services.  Our PIC network includes 24 centers and over 50 therapists across the state of Georgia!

Accessing the PIC benefit therapists is an easy process. To qualify, families must have a child who meets one of these qualifications:

  • Diagnosed with a childhood cancer, LCH, HLH, or aplastic anemia
  • Relapsed with a childhood cancer, LCH, HLH, or aplastic anemia
  • Passed away due to childhood cancer, a cancer-related circumstance, LCH, HLH or aplastic anemia

The PIC program provides up to ten (10) counseling sessions at a minimal cost to families. Additional details:

  • If you choose to utilize these counseling services, CURE will pay 100% of the first session.
  • After the first session, families are responsible for $25.00 copay for each additional session (sessions 2-10).
  • Counseling sessions may range from individual counseling for the patient, siblings and/or parent to marriage counseling, grief counseling, or any combination of these services.
  • You also have the option to divide the 10 sessions between multiple family members based on your family’s needs.

To sign up or learn more, contact Karen McCarthy at karen@curechildhoodcancer.org.

Parenting Through Illness

20057-868On October 17, 2015 CURE Childhood Cancer hosted a workshop for parents of children with cancer entitled “Parenting Through Illness.” Workshops like the one recently offered are extensions of CURE’s Partners in Caring program, which aims to address the psychosocial needs of families navigating the world of childhood cancer. This particular workshop focused on approaches to parenting a child with cancer during cancer treatment.

Led by Dr. Tiffany McNary of Georgia State University and Ginny Thompson from the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta, parents learned the TEEL Method of interacting with their children. Using the TEEL Method technique Dr. McNary and Ginny coached parents to Track, Empathize, Encourage, and Limit-Set with their child. “The workshop provided skill sets to help with the day to day challenges that are associated with parenting a child with cancer,” said one parent. “I am so grateful to be a part of the class.”

Along with learning practical tools for parenting through illness, parents also had the opportunity to connect with other parents of children with cancer.  Through shared experiences and shared feelings, parents found a community of support. “It was a blessing to be able to share with other parents going through the same journey,” shared one mom. Another found comfort in “just being around other parents going through the same struggle.”

To close the workshop, parents were asked to write themselves an encouraging note on a postcard which will be mailed at a later date. Parents wrote words of encouragement to keep going, encouragement of a job well done, encouragement to see themselves and their efforts as enough.

For information about future workshops or about CURE’s Partners in Caring counseling program, please contact Karen McCarthy at karen@curechildhoodcancer.org.

What Can a Girl Do? Brownie Troop 13550 has an Answer.

Mary Tipton Carter has been a member of troop 13550 since Kindergarten. She is an energetic, smart and compassionate young lady — a great all-around Girl Scout. On February 4, 2015, she went to Children’s Healthcare of Atlanta at Scottish Rite with abdominal pain and fever. Soon after, she had surgery to remove an ovarian tumor identified as Ovarian Dysgerminoma. Mary Tipton’s friends and family were all thankful that this appeared to be a treatable form of cancer; however, this diagnosis meant that Mary Tipton would have to undergo chemotherapy and weeks in the hospital. She would miss school, Girl Scout meetings, softball, play dates with friends, and much more. Mary Tipton’s brownie troop quickly went into action and asked the question, “What can our troop do?”

Screen Shot 2015-06-08 at 10.09.34 AMThe troop’s ambitions started out rather small. The girls wore turquoise bandannas, Mary Tipton’s favorite color, to show their support. They made cards to send to the hospital and agreed to participate in CURE’s Lauren’s Run. Then the troop leaders asked the girls if they would like to vote on an activity that they, as a troop, could do to raise money for CURE in honor of Mary Tipton. The girls were instantly excited to come up with their own ideas on what they could do to support their friend. The ideas kept coming, and they settled on a roller Skate-a-Thon. They found a church that was willing to host the event and went to work promoting the Skate-a-Thon to other troops, their school and community. But it didn’t stop there.

Screen Shot 2015-06-08 at 10.09.16 AM

Screen Shot 2015-06-08 at 10.09.53 AMWhile planning the event, the troop found out that CURE needed toiletry kits to provide to patients who are admitted without notice or have to spend the night at the emergency room. With just a few phone calls the troop raised $650. And, within a few short weeks, they secured donations for toothpaste, tooth brushes, shampoo, body wash, lotion, and a gift card from Publix. The girls made more than 280 kits.

During the Skate-a-Thon, the troop worked hard to manage the assembly of the toiletry kits, run concessions, and accept monetary donations. By the end of the evening, they had put together a nine-month supply of toiletry kits and raised $900 for CURE! What’s even more amazing is that the day the Skate-a-Thon took place happened to be the same day Mary Tipton went back to the hospital for her CT scans. Everyone was thrilled to hear that her scans came back all clear. This event turned out to be a great way to show not only the scouts but all of the young people who attended just how easy it is to get involved with a very important cause.

Mary Tipton’s troop now has a better perspective on the question, “What can a girl do?” For starters, a girl can beat cancer! And together these girls are capable of doing truly amazing things that continue to inspire us every day.

CURE’s Weekend of Hope and Healing

How can one begin to describe a weekend spent with people from different areas of Georgia and beyond, many of whom had never met before, and some were seeing each other for the first time in a year, but each sharing one heartbreaking bond? Each parent understood the reality of losing a piece of him or herself – a child.

On January 17th and 18th CURE hosted our Annual Weekend of Hope and Healing. Forty-seven families gathered to find comfort and hope from speakers and counselors – and each other. Throughout the weekend, parents were guided with tools to move forward in the grief process.

Parents remembered their children during a beautiful candle lighting ceremony and laughed and cried with other each other during the “Memories” session. One young couple discovered they each had some different memories of their child, and they expressed, “It brought joy in hearing something new about our sweet child.” A memory jar was created for each family to retain those special thoughts/words, and they were encouraged to ask family members and friends to record their precious memories to include in the memory jar.

Cam Street

On Saturday morning, Janet Street who lost her son, Cam, to cancer in 2009 concluded her presentation, “Thoughts on Grieving, Striving for a Healthy and Positive Perspective” with this thought, “Your joy will return – joy and pain can coexist.” A mom thanked Janet by saying, “Thank you for coming to share your story and let us know that we are not alone in this journey. Thank you for helping us with our pain.”

Dr. Rona Roberts’s, whose precious daughter passed away in 2013, spoke to the group on Sunday and eloquently shared her journey into the world of childhood cancer. Tears freely flowed as other parents, who did not know her daughter, totally “got” her story. Her message inspired, comforted, and left all full of hope. One parent shared, “The loss of a child can be paralyzing to the mind and life of the parent – and to witness [Dr. Roberts] stand and speak so strongly today was a true testament. I will never forget [her] words and message!”

A parent in attendance expressed, “I saw many couples lovingly supporting and protecting each other. It’s so encouraging to see couples and families loving each other through loss.” The weekend was very much a time of shared pain and loss, but more importantly a weekend of hope and healing.

How To Be A Shelter For Friends and Family Caught in Life’s Storms

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By: Shawn Murphy

Whether a friend or family member has recently received a difficult diagnosis or is reeling from a personal loss, each of us can provide shelter and comfort to those caught in life’s storms. We all have the ingredients necessary to do so. We need only a compassionate heart, empathetic ears, helping hands and watchful eyes.

1). Compassionate Heart

Giving shelter starts with a compassionate heart. Compassion is the natural emotion that one feels in the response to the suffering of others. It is unnatural to ignore pain and suffering in ourselves or others. In its purest essence, it simply comes back to the golden rule: “Do unto others what you would have them do unto you.” Without this essential first step of feeling love and caring, the act of mercy – reaching out to help others in their time of need – would never happen.

2). Empathetic Ears

Being a shelter to others involves empathetic ears and good listening skills. It is important to let the hurting or grieving person know that it is okay to share what they are feeling and to allow them to determine the timing of when or if they decide to share.

Equally important is how we listen. Our role is to be empathetic listeners who seek to understand, accept, and acknowledge feelings in a safe environment and validate the emotions while withholding judgment.

3). Helping Hands

Providing shelter to others involves acts of mercy; showing kindness and lending helping hands to those who are in a difficult or even desperate situation. For a person or family who is in the midst of illness or loss, helping in practical ways is greatly appreciated, with continued support over the long haul and providing extra help on special days.

There are many practical ways to help a grieving person. You can offer to pick up groceries, run errands, provide meals, receive phone calls, help with paperwork, do housework, watch children, look after pets, take them to lunch, or share an enjoyable activity with them.

The goal is to let them know they are loved and to demonstrate your care by personally helping and providing ongoing support.

4). Watchful Eyes

Finally, offering shelter also involves offering watchful eyes. It is normal for anyone who has just learned of a cancer diagnosis or is caregiving for someone through a protracted illness or who may have experienced the loss of a loved one to experience Post Traumatic Stress Disorder (PTSD), depression or similar types of issues.

However, professional help may be in order if over time the symptoms do not fade. Watchful eyes should look for signs such as inability to function in daily life, extreme focus on death, excessive bitterness, anger, or guilt, neglecting personal hygiene, alcohol or drug abuse, inability to enjoy life, hallucinations, withdrawal from others, constant feelings of hopelessness, talking about dying or suicide. If these signs are present, please encourage your friend or family member to seek professional help.

 

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Shawn Murphy serves as Director of Community Relations and liaison to CURE Childhood Cancer on behalf of Summit Counseling Center in Johns Creek, GA. For information about CURE’s Partners in Caring Counseling Program, please contact Karen McCarthy at karen@curechildhoodcancer.org or (770)986-0035 ext. 26.

 

Securing Our Own Oxygen Mask First

shawn-murphyBy: Shawn Murphy

The classic illustration is to think of it the same way you would think of the safety instructions when you board a jetliner with your child.  If a situation arises inflight, we are instructed to first secure our own oxygen mask before trying to place an oxygen mask on our child.  We’ve all heard the announcement. “In the event of a loss of cabin pressure, oxygen masks will deploy… to secure pull the mask toward you, secure the elastic strap… please make sure to secure your own mask before assisting others.”

When caregiving for a child or family confronted with the seemingly unrelenting challenges of cancer, it is even more important than ever to be intentional in taking care of ourselves…first.  For most of us, this can feel counterintuitive, perhaps even selfish.  After all, aren’t we by definition providers, protectors, and caregivers?  We’re at a stage of life where we’re generally less used to being on the receiving side of care than on the giving side.

The truth is that if we want to do the very best job possible caring for our child and our family over the long haul, it is in everyone’s best interest that we are regularly investing the necessary time to maintain our personal health and wellness.  Moreover, since our essence as human beings is body, mind, and spirit, the regular maintenance of these three vital life elements should be reflected to some degree each and every day if only for brief moments.

Signs that we may be in trouble as caregivers include being irritable or overwhelmed, changes in sleep patterns, feeling tired all of the time, gaining or losing a lot of weight, or a lack of interest or apathy toward activities we previously loved.

When we see these signs in ourselves, it is important to take some time to visit with a properly vetted and trusted professional, such as a physician (body), counselor (mind, emotions, behavioral), and/or faith leader (spirit) and apply some of the tips below to help prioritize your own health.

 

Accept help when it is offered.

Most people genuinely do want to help.  If you can’t allow anyone to actually watch your sick child, prepare a list of things you are comfortable allowing people to help with.  Maybe someone could run some errands for you, pick up your groceries or bring you dinner.  Whatever it is, let someone else take some of the burden from your shoulders.

Make a plan to care for your own physical health. 

We need to maintain adequate nutritional status, set priorities on getting enough sleep whenever possible and add exercise (even if it is as simple as a brisk walk 3 to 5 times each week) to help reduce the toll of stress on our body.

If you are on prescription medications, be sure to keep up with taking them on schedule, refilling them on time, and scheduling any follow-up appointments with your own physician to manage your health issues.  It is helpful to schedule such recurring reminders into our phone’s calendar so that we don’t lose track of time.

Make a plan to care for your emotional and mental health.

When faced with a traumatic experience, other areas of our life that were once “manageable” sometimes become “unmanageable”.  It is not unusual for anxiety and depression to begin to mount.  It is always preferable to seek professional counsel and support before an emotional mood disorder(s) can take root; not only for ourselves but for our children and family as well.

  • If we get depressed, it may affect our children adversely.
  • The reverse is also true: when we do what it takes to be happy ourselves, our children reap the benefits.
  • Emotions, in general, are contagious.

 

If you find that you continue to be overwhelmed and depressed, please take the issue to your physician or counselor right away.  Again, it is quite common for caregivers to experience depression and some may need more than just these simple behavioral changes to get through it.  PLEASE, take care of yourselves so that you can continue to take care of others.

 

Shawn Murphy, M.A. is an ordained pastor and serves as Director of Community Development at the Summit Counseling Center in Johns Creek, GA.