Page 32 – CURE Childhood Cancer

Cure In CURE Childhood Cancer, Family & Patient Support

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

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 [email protected] or (770)986-0035 ext. 26.

Cure In CURE Childhood Cancer, Family & Patient Support, Nursing & Caregivers

Securing Our Own Oxygen Mask First

By: 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.

Cure In Family & Patient Support

Hidden Impact of Childhood Cancer: Your Relationship

Contributed by: *Mark R. Zuccolo, Ph.D., LMFT

(updated 2/10/25)

Childhood Cancer and Parent Relationships

When parents are involved in the care of a child with cancer, they experience both positive and negative changes in their relationships, communication, stress, and roles.

Emotions such as anxiety, guilt, anger, and distress ebb and flow during the course of the child’s illness. These emotions are felt and expressed by all family members, often more overtly by mothers and children. The child’s cancer affects the family’s need for care, self-esteem, social interaction, and functioning. Consequently, parents may find it necessary to change or modify their family roles to cope with the demands of their child’s illness.

There are variations in the impact of the child’s illness on the mother/father relationship. While some relationships are weakened by these extremely stressful circumstances, others are strengthened during the cancer experience.

The Impact of Childhood Cancer on Couples: A Complex Journey

According to an extensive 2010 integrative review of parents of children diagnosed with cancer by DaSilva, Jacob, and Nascimento, time since diagnosis appears to be an important factor in the couple’s relationship. Many of the changes occur shortly after diagnosis. However, when the child has been ill for 1 year many parents report fewer changes in their relationships. After 2 or 3 years, many couples report positive changes. After 4 years or more, most parents note little to no additional changes. In times of the child’s remission, family life is likely to return to normal, and couples note a sense of their strengthened relationship. If the child’s cancer relapses, however, the entire crisis process can be reestablished. Some couples report greater emotional closeness, while others realize that their adverse circumstances simply reveal the marriage’s strengths and weaknesses.

Common Relationship Challenges Faced by Parents of Children With Cancer

Both men and women may experience a range of challenges as they navigate the emotional and practical demands of caring for their child:

Mother’s Issues

May feel that the adverse and stressful circumstances generated by the child’s illness are weakening the connection with their partner
May expect fathers to help with caring for the sick child and managing the daily routine, but feel overwhelmed and frustrated when this doesn’t happen
May feel that their role as wife is replaced by the caregiver role during the illness
May focus on being physically present with the child, while neglecting their own needs and desires

Father’s Issues

May feel burdened by their jobs and want downtime away from work
May find it difficult to acknowledge their weaknesses and vulnerability in moments of grief and loss
May repress fear and inner conflict, perceiving that they are socially expected to show strength and courage
May not share their uncertainties and feelings of difficulties with their wives because they may be afraid of appearing weak

Couple’s Issues

High-stress factors can produce negative changes in couples’ relationships:

Parents’ intimate relationship and sexuality may worsen for almost half of the couples surveyed
Couples may invest most of their physical and emotional energy in their child’s illness, leaving little or no time and energy for intimacy and leisure activities
Difficulties in communication appear frequently in parents of a child with cancer, which can lead to conflicts, communication problems, and lack of alignment between parents
Each spouse may deal with the child in their own way and feel that they cannot meet the other parent’s needs, leading to conflicting needs that must be reconciled through communication and negotiation

The Importance of Partnership and Emotional Availability in the Face of Childhood Cancer

Difficulties in communication appear frequently in parents of a child with cancer. Healthcare professionals may be able to identify parents at risk for developing conflicts, communication problems, and lack of alignment between parents that could interfere with providing optimal care for their child with cancer. If these symptoms are observed, they should be addressed, preferably in counseling.

Both partners need to be comfortable and flexible in dealing with these role changes by emphasizing the importance of working together in a partnership, as a team, independently of how roles are shared. It is important to be emotionally available for each other, whether separated or together. Bonds are strengthened when the couple is together, and they individually suffer in each other’s absence. Despite the inevitable tensions, couples can share strategies for handling situations as they emerge, and they mutually provide encouragement and support for each other.

Learn More About CURE’s Counseling Program

If your relationship has been impacted by a childhood cancer diagnosis, we would love to be a counseling resource for you. CURE’s Counseling Program has sessions available for patients, parents, and siblings. Please submit a counseling form (HIPAA compliant) and we will be in touch.

* Dr. Mark R. Zuccolo, Ph.D., LMFT, is a licensed psychotherapist, counselor, and behavioral coach. Dr. Zuccolo helps individuals, couples, and families overcome dysfunctional thinking and behavior patterns, empowering them to make more balanced and realistic choices about themselves, their world, and their future.

Cure In CURE Childhood Cancer

Heart Problems After Childhood Cancer Treatment

The following was written by Brooke Cherven, MHP, RN, CPON and Lillian Meacham, MD.

Most children diagnosed with cancer today will become long-term survivors. There have been many advances in childhood cancer treatment and survival rates are near 80% overall. The treatments used to cure cancer, however, can cause health problems later in life, called late effects. Risk for late effects is very treatment dependent, so it is important for survivors to be seen in a survivor clinic to receive appropriate screening.

Some survivors can develop heart problems during or after treatment related to certain chemotherapy or radiation. The best way to find out if you are at risk is to visit a survivor clinic where you will get a Survivor Healthcare Plan which includes: 1) a summary of your treatment 2) a late effects risk profile and 3) a surveillance plan for monitoring for those late effects.

Heart problems which can occur because of therapy include:

Weakening of the heart muscle
Irregular heartbeats
Damage to a valave in the heart
Inflammation of the protective lining of the heart
Scarring or blockage of the blood vessels

Only certain chemotherapies are related to heart problems. These chemotherapies are called anthracyclines and include:

Doxorubicin (Adriamycin)
Epirubicin
Mitoxantrone
Daunorubicin
Idarubicin

Radiation to the heart or areas around the heart can also cause heart problems. This includes radiation to the:

Chest or thorax
Spine
Abdomen
Total Body Irradiation

Risk for heart problems is higher in patients who received higher doses of anthracylines, higher doses of radiation or a combination of both anthracyclines and radiation to or around the heart. Patients who were treated at a younger age are also at higher risk.

It is important for survivors at risk for heart problems to be screened so that if a problem does develop, it can be recognized early and treated. An echocardiogram (echo) is an ultrasound of the heart and allows for a cardiologist (heart doctor) to see how they heart is functioning. Echos are done on a yearly, every other year or every 5 year basis depending on the level of risk for each survivor. When you are seen in a survivor clinic, is you are at risk for heart problems, your providers will tell you how often you need to have echoes. In addition, patients at risk have an electrocardiogram (EKG) to monitor heart rhythm at their first visit to survivor clinic.

It is important for every survivor to know his or her risk of heart problems and how often to have echoes. Many times heart problems, if they develop do not appear until years off treatment. Heart problems can also get worse over time. For survivors at risk, certain circumstances may require added guidance, such as during pregnancy or sports training. Pregnancy can put added stress on the heart and survivors at risk are encouraged to see a cardiologist during pregnancy. Athletes who participate in weight training are instructed to avoid heavy lifting in favor of lower weight at more repetitions.

We do not know why some survivors develop heart problems and others do not, so it is crucial that everyone who is at risk receive their scheduled echos. Many adult doctors are not aware of the necessary screening for heart problems in childhood cancer survivors. Sharing your Survivor Healthcare Plan with your doctors can help them learn about what tests you need and how often you need them.

Join us at the Beyond the Cure conference February 8th, 2014 8 am-12pm at Children’s Healthcare of Atlanta at Scottish Rite. The conference will cover survivorship care and staying heart healthy after cancer treatment. There will be information about cardiac late effects, preventing heart disease in all survivors and how Strong 4 Life can help families stay healthy. Learn more and register at www.choa.or/survivorshipconference