CURE Childhood Cancer Archives - Page 2 of 2

Cure In CURE Childhood Cancer, Nursing & Caregivers, Research

CURE Welcomes Dr. Douglas Graham as the new Director of the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta

We are very excited to welcome Dr. Douglas Graham to the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, and introduce him to the CURE community. We enjoy a strong partnership with the Aflac Cancer Center, providing funding for promising research conducted by its researchers, annual funding of two fellows (soon to be three!), and serving patients and families – often within its four walls – cared for its the skilled doctors and nurses. We are proud of and grateful for this partnership. In the letter below, Dr. Graham shares insight and his vision for the Aflac Cancer Center. We look forward to continue to work in partnership for the good of childhood cancer patients and their families and all who care for them.

As the recently appointed Director of the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta, it is a privilege to become a part of the CURE Childhood Cancer family. Thank you for your remarkable support which has enabled the Aflac Cancer Center to become one of the premier centers in the country for children to receive every level of cancer care. Your financial support has been critical to our research to develop better cancer treatments, our fellowship program to train the next generation of pediatric cancer doctors and for our clinical care, which includes family emergency funds.

Kristin Connor, CURE’s Executive Director, graciously provided me with this opportunity to give you a little more insight into care and research offered by the Aflac Cancer Center, and a few exciting programs that lie ahead.

The Aflac Cancer Center has made enormous strides with support such as CURE’s, and our advances have been recognized nationally. Last year we were ranked by US News and World Report as the number one program in the state of Georgia to treat pediatric cancer patients and the number nine program in the entire country! We now have 80 pediatric specialists who are hematology/oncology/BMT faculty, and we are one of the five largest pediatric oncology programs in the nation. This is significant because we encounter every type of childhood cancer, and we are able to provide the most sophisticated care for the sickest of children with cancer, while simultaneously being a top-rated research center. We are a major referral center for the country, having cared for children from 43 states.

We participate nationally in the Children’s Oncology Group (COG), which is a collaborative group of cancer doctors across the country who take care of more than 90% of all children with cancer in the US. Within COG, we have been selected as one of only 21 sites (out of 223 COG member institutions) to be given access to the newest of cancer drugs in early phase clinical trials through the COG Phase I Consortium. Our goal is to continue to offer new therapies through COG as well as to move new treatment ideas into the clinic developed by our cancer physicians and researchers. Some new research discoveries both in gene therapy and in new cancer drug development made by our faculty are the basis for new clinical trials which are planned to be launched in the coming year in brain tumors and in leukemia.

Two examples of innovative therapies we have initiated at the Aflac Cancer Center are our MIBG program for neuroblastoma and our CAR-T immunotherapy program for relapsed childhood leukemia. We are one of the few places in the country to offer MIBG therapy, and the COG is including the Aflac Cancer Center as one of the treatment sites for an upcoming MIBG clinical trial. A new MIBG treatment room is being planned to accommodate this anticipated increase in patient referrals.

The CAR-T therapy for relapsed leukemia involves harnessing one’s own immune system to combat cancer. In this type of therapy, immune cells (T cells) are taken from the leukemia patient and modified in cell culture to be able to seek out and kill leukemia cells. The Aflac Cancer Center is one of only a handful of centers in the country to be selected as a treatment site. This therapy is successful in offering hope to children with resistant leukemia who have no other treatment options resulting in cures not previously possible.

Thank you, again, for your remarkable support of cutting edge research to cure more kids, and for your dedication to provide family centered care for kids with cancer. I look forward to continuing our strong partnership so that we can provide the best care possible for children with cancer, both today and tomorrow.

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 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