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CURE Childhood Cancer

It’s Personal

Every member of the CURE staff is whole-heartedly devoted to our mission. Each person understands the gravity of our work – children are literally depending on our success. However, for some CURE staff, the fight against childhood cancer is intensely personal. Seven have been in that unimaginable place – seated across from a doctor completely unprepared to hear those awful words: “Your child has cancer.” Each journey was unique, yet these seven emerged from their experiences changed – and forever committed to fight the disease that tormented, and in two cases, took their children.

“Although Mitchell was diagnosed 18 years ago,” said Lisa Odendahl. “I have vivid memories of my world turning upside down with no warning. It makes me sympathetic to families whose kids are going through treatment. Every day I wish I could do more. But, I have reconciled the fact that I can offer a listening ear, encouragement to live in the moment, and a glimmer of hope beyond treatment.”

The ability to understand and offer support as only one who has been there can do is a common theme.

“I have stayed in the same rooms, eaten the same food, know the same staff, and have endured the same sleepless nights,” added Kerry Kavlie. “I have prayed the same prayers. All cancer journeys are unique, but there is a common thread throughout. I now get to be that ray of hope for newly-diagnosed families to offer a light at the end of the tunnel and to care for them when the treatment isn’t going how they had hoped.”

A sense of urgency was also forged by the bedside.

“I can’t unsee what I’ve seen,” said Mark Myers. “The treatment Kylie received was devastating and, in the end, ineffective. She told me to cure childhood cancer, and I am determined that when I look into a patient’s eyes, I can honestly say I am doing everything within my power to make things better for them.”

“My eyes had been opened to a disease that was plaguing children and ripping them from their families forever, and very little was being done to fix it,” explained Mandy Garola. “I wake up each day knowing that I’m working and fighting for children who can’t fight for themselves.”

The experience left many with a pressing need to make a difference for other children and families.

“I was somewhat clueless prior to Katie’s diagnosis. I didn’t know about lack of funding for research, lack of new medicines, or risks of secondary cancers,” Karen Rutherford recalled. “Once the dust settled from our battle, I knew I had to do something productive with what our family had just been through. I know I can’t cure cancer, but I can walk alongside another family battling, be a shoulder for them to lean on, help serve a hot meal, and raise money for the vital research needed.”

We are often asked if our experience makes our job hard.

“It is sometimes so hard to see those sweet bald heads,” said Jenny Wilkins. “I always want to rub a bald head like I did Catie’s. I never do because it’s such a personal thing. But if I close my eyes, it takes me back. And while my work at CURE is focused on events, I still have the opportunity to meet amazing kids and families and that reminds me that God can use the suffering I’ve been through by allowing us to be there for and help others.”

“People always ask me how I can do what I do,” offered Kerry. “It isn’t always easy, but the good days far outweigh the bad. Giving back is not an obligation, it is a privilege. It is putting yourself aside, diving head-first into the trenches, and not turning back.”

“There are certainly difficult, heartbreaking days,” added Mandy. “But when I think of the children we’ve lost and the potential they possessed, it’s easy to press on. I’m better off having known these precious kids in the first place. I’m honored and humbled to be a part of an amazing organization like CURE.”

“For so many of us, this fight is absolutely personal,” explained Kristin Connor. “Nothing about it is a ‘job.’ We all know from our very difficult experiences that our children deserve better. They deserve the chance to grow up and pursue their dreams. We have to do what we can to ensure that happens. It’s not optional; we all feel compelled to lock arms and fight this fight together.”

There’s something special about the CURE staff, no doubt. We won’t stop fighting until every child is guaranteed a cure… after all, it’s personal.

A December to Remember

The bulletin board at CURE typically holds announcements and a letter or two. Tucked between the refrigerator and water cooler in the breakroom, it is rarely seen by visitors to the office. It’s really just for us. But in December, it came alive with pictures, notes, and cards and became a stark reminder of the lives we are touching because of the generosity of our donors.

Along with many sweet holiday wishes, one note says:

“My family dearly thanks you for your help with our utility bill last month. It could have meant less food, waiting for winter jackets, or quite a small Christmas for our family of 6. But you stepped in. You’ve truly blessed us.”

Another family in treatment benefited from our Holiday Angels program and wrote to say:

“Thank you all for looking out for my family this Christmas, because this year was NOT looking like a Christmas for us at all, but because of the CURE program we will have one.”

Tacked between warm letters such as these are pictures of children we met as bald patients who now are healthy and participating in life as a child should. Through the cards from families who have lost their children, we are reminded that our work is still not done; but we’re heartened to know that CURE remains a part of their family’s life and holiday traditions.

In that season of giving, you allowed us to do so much for families distressed by childhood cancer. During the month of December, we served nearly 1000 meals to patients and their families in treatment, including a special Christmas Eve meal at both campuses of Children’s Healthcare of Atlanta. Imagine the impact of a warm meal and a smile to those stuck in the hospital instead of at home for the holidays.

Imagine also being a parent balancing the high cost of treatment with your children’s wish lists. CURE donors stepped up to tip the scales and became Holiday Angels. Throughout Georgia, our donors provided gifts for 101 families whose Christmas or Hanukkah gift giving was unlikely. Between our little cancer fighters and their siblings, 300 children experienced holiday joy with gifts from their lists.

More than 125 families attended amazing holiday parties in Atlanta and Savannah, where children decorated gingerbread houses, made slime, ate snacks, and got to sit on Santa’s lap. Most importantly, they were able to take a break from the worries of treatment and enjoy the merriment of the season. One parent wrote:

“Our sweet girls had so much fun at the holiday party. They enjoyed the day and will remember the fun times. All the princesses and Spider Man were a hit and the girls enjoyed talking to Santa”

None of this would be possible without the generous support of donors like you. As we settle into a new year, we’re heartened to know your support didn’t end in December. You are with us all year long, and from the bottom of our hearts, we are thankful.

An Inside Look at CURE

By day, Kevin Kennedy works as a vice president with Morgan Stanley in the Institutional Securities Group. But if you have the chance to speak to him, he likely won’t want to discuss market information, strategic thinking, or challenges with listed derivatives trading technology. No, Kevin will tell you about his family, share pictures from his latest motorcycle adventure, or bring you up to speed with his other passion – helping children with cancer.

Kevin and his wife, Margaret Ann, had a first-hand experience with cancer when their eighteen-year-old son, Joe, was diagnosed with aplastic anemia, a rare bone marrow failure disease. Joe enrolled in a clinical trial at the National Institute of Health in Bethesda, Maryland. While the trial was not successful for everyone, it worked to send Joe into remission. Once in remission, Joe was abruptly released from the hospital. Weak from the treatment, Joe was unable to fly commercially or drive back to Atlanta. Kevin shared their dilemma on Caringbridge, and within an hour he had five offers to transport his family by private jet.

“I had seen people in need while we were in treatment. But that day showed me just how much people want to help children and their families,” Kevin recalled. “I couldn’t believe that people – many of whom we didn’t know – were making such kind offers.”

Upon arriving home, Kevin and his daughter attended CURE’s A Tribute to our Quiet Heroes luncheon in September 2007. Touched by what he saw there and the people he met, the Kennedys began fundraising and regularly attending CURE events. From the outside, Kevin felt that the organization was sound and well-managed. The more his family’s involvement increased, the more respect he developed for CURE. So five years later when he received a call from a CURE board member to discuss Kevin’s interest in serving on the board of directors, he jumped at the opportunity.

“I was thrilled to grow my relationship with CURE,” said Kevin. “But I did have a nagging little fear that when the curtain was pulled back and I drilled into the details, it would taint my perception of the CURE I had come to love. Fortunately, what I found out impressed me as I witnessed the heart of CURE come out in everything the staff did. I grew to love the organization even more!”

Because he had first-hand knowledge of the needs of patients and their families, Kevin immediately dove into CURE’s patient and family services programs. He also became an active part of the organization’s fundraising efforts and took a leadership role with the board governance committee. Later he served as board president for two years.

“As president of the board, I was able to dig even deeper into the inner workings of CURE. I saw the good, bad, and the ugly. Fortunately, there was more good than anything,” Kevin explained. “The staff and board of any organization have to work hand in hand to ensure success. The effort demands a well-orchestrated partnership. In my years on the board I truly enjoyed working with Kristin and the team, and I thought we all worked together very well.”

As Kevin prepares to rotate off the board, he reflects on his service, “I have loved my time on the board. Besides the rewarding work, over the years I have had the opportunity to meet many interesting and influential individuals and have made great friendships,” Kevin shared. “I’ve never been star-struck in my life, not until I had the opportunity to meet the Aflac Duck at CHOA!”

As he looks to the future, Kevin sees elevating the CURE message above other well-deserving charities and donor retention as two of the biggest challenges. He also views millennials and other non-conventional givers as a huge opportunity.

“No one will question what we are doing,” Kevin insisted. “Our cause is just and our organization is sound. We just have to be persistent and keep telling the story. I will miss being involved with the day to day workings of CURE.”

We will miss you too, Kevin.

 

 

The Difference You Made: CURE’s Fiscal Year Comes to an End

With the close of CURE Childhood Cancer’s fiscal year on June 30, 2016, we are eager to share with you the incredible difference you made over the past 12 months for children with cancer and their families. With your help, we raised more than $5.2 million to advance our mission!

Screen Shot 2016-07-22 at 10.04.32 AMThis year, CURE awarded nearly $2.7 million in grants to support research initiatives all with the goal of improving survival for those battling childhood cancer. We are focused on moving the needle ever closer to a cure for all children with cancer and advancing immunotherapies and other treatments which are safer and less toxic for children. Our grants funded 20 pediatric cancer research labs at top institutions around the country.

Supporting patients and their families is paramount to us, and you enabled us to do this well.

In total, our busy patient and family services team – with the help of dedicated volunteers – served dinner to 2720 and lunch to more than 6000 hospitalized patients, parents, siblings, nurses and survivors. They delivered 638 brown bag lunches to parents of hospitalized children in Atlanta and Savannah, more than 1060 snack bags to patients and families in Atlanta, Savannah, Augusta and Macon and 342 toiletry bags. More than 300 families received CURE totes at diagnosis full of practical items and tips from other families who have walked the childhood cancer journey. We assisted 229 families with emergency financial assistance grants totaling $114,747, and provided $20,000 in transportation assistance to 44 families. We distributed an additional $14,395 in gas, grocery and pharmacy cards.

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CURE recognizes the incredible psychological and emotional hardships of childhood cancer and offers families the opportunity to receive professional counseling. In the last year, we provided 56 counseling sessions. We also hosted more than 100 parents at bereavement weekends.

Screen Shot 2016-07-22 at 10.13.36 AMFamilies let us know the difference this support made to them. One mother wrote, “Thank you for all you have done during this difficult time in our lives. Without your help, many donations, meals, gas cards, Publix grocery cards and financial support when we had no money… we would have never made it this far. We are utterly indebted to your organization and plan to pay it forward as you have graciously shown us how to.”

We also hosted fantastic holiday parties in both Atlanta and Savannah and provided holiday assistance to 76 families, ensuring their holidays were special. And so much more – all because of you!

We could not do what we do without the help of each and every one of you. YOU are CURE and we are so grateful.

CURE’s Partners in Caring Counseling Program

At 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 [email protected].

CURE Executive Director Kristin Connor Named Atlanta Magazine’s “Women Making a Mark” Honoree.

Each year Atlanta Magazine recognizes “Women Making a Mark,” placing a spotlight on women from our community who exhibit tireless dedication, strong leadership and impassioned goodwill. We’re thrilled to announce CURE Executive Director, Kristin Connor, was just named one of this year’s Women Making a Mark honorees. Please enjoy a transcription of the article, which is available on-stands now. 

Screen Shot 2016-06-02 at 4.08.52 PM“Kristin Connor didn’t know an unborn child could get cancer. The successful business litigator was thirty-three weeks pregnant in 2001 when an ultrasound revealed a mass on her son’s tiny spine. Brandon was diagnosed with neuroblastoma at one month old. At age two, he was set to undergo a complex surgery to remove the tumor. But the day before the operation, a last-minute MRI showed nothing short of a miracle. The tumor has simply disappeared.

Now the executive director of Atlanta nonprofit CURE Childhood Cancer, Connor still has no explanation for her family’s happy ending. (Brandon is now 14 and thriving.) But it was other family’s stories she couldn’t shake – like a friend whose child suffered thirty rounds of chemotherapy, only for the cancer to return weeks later. “I thought, ‘This is madness. We have to stop this madness.'”

She started pressing the American Cancer Society for more funding for pediatric cancers (the vast majority of national cancer research dollars go to adult forms). A mutual friend arranged a meeting with Tom Glassine’s wife, Chris; the Hall of Fame pitcher tapped Major League Baseball to raise $2 million for the cause. That feat earned Connor a job with CureSearch, a national childhood cancer nonprofit. A year and a half later, Atlanta’s CURE Childhood Cancer contacted her about its top post.

In her decade long tenure, Connor, forty-seven, has furthered CURE’s mission of offering financial assistance, counseling, meals, and other support to affected families. But she has also built a research juggernaut. With the help of her board of directors, she has increased CURE’s annual investment from $200,000 to $2.5 million to recipients such as the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta and the Vanderbilt-Ingram Cancer Center at Vanderbilt University. Advances in these laboratories could lead to a 100 percent cure rate for childhood cancers in as soon as twenty years, Connor says. And that would let all families have their happy ending.”

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.

Screen Shot 2016-02-10 at 11.34.31 AMAs 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.

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 [email protected] 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.

 

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

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