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Nursing & Caregivers

From Hospital Gown to Nurses Scrubs

How do you best describe a nurse? Many adjectives come to mind: caring, compassionate, sympathetic. But does an experience with sickness help nurses treat patients? Does their care change when they have suffered the very malady they are employed to remedy?

In the halls of many pediatric cancer hospitals, there are nurses who have visited those beds, not only as caregivers, but as patients. CURE sat down with six such nurses to discuss how their cancer experience has impacted their lives and how they treat their patients today.

Bridget Sandy

At the tender age of three, Bridget was diagnosed with leukemia. While she was in treatment, she watched the nurses intently and mimicked their actions on her stuffed animals and dolls when she got home. She knew early on she wanted to be a nurse, and her goal was always to serve on the pediatric oncology floor at Children’s Healthcare of Atlanta where she had been treated.

“I don’t always tell a patient’s family that I’m a survivor,” Bridget said, “But if the timing is right, I will tell a mom or dad about my experience because I saw my parents go through treatment with me.”

Bridget lives for little triumphs with her patients – like sharing a smile or laugh even when they don’t feel good.

Bobby Struble

During his treatment, Bobby saw nurses as the people who held his hand.

“I would freak out if I couldn’t see what the doctor was doing,” he recalled. “And there was a nurse who held a mirror up so that I could watch the doctor give me a spinal tap. That made a big impression.”

Bobby graduated college with an advertising degree and quickly realized that it was not for him. He went right back to nursing school and feels absolutely fulfilled in his choice of careers.

“I have felt the sickness and pain that these kids feel,” he explained. “But I don’t often tell them I’ve been there because in the moment, they mostly need a nurse and not a survivor. After I build a relationship with the family, I sometimes bring it up. I have learned that as a nurse, we treat the parents as well as the children.”

Bobby Struble

During his treatment, Bobby saw nurses as the people who held his hand.

“I would freak out if I couldn’t see what the doctor was doing,” he recalled. “And there was a nurse who held a mirror up so that I could watch the doctor give me a spinal tap. That made a big impression.”

Bobby graduated college with an advertising degree and quickly realized that it was not for him. He went right back to nursing school and feels absolutely fulfilled in his choice of careers.

“I have felt the sickness and pain that these kids feel,” he explained. “But I don’t often tell them I’ve been there because in the moment, they mostly need a nurse and not a survivor. After I build a relationship with the family, I sometimes bring it up. I have learned that as a nurse, we treat the parents as well as the children.”

Amelia Ballard

Amelia always wanted to be a nurse. But the total-body radiation that saved her life threatened to derail her ambition.

“My parents were told I would never be able to read because of the cranial radiation I had received,” she said. “School was difficult, and I had to work harder than other students. But my parents had seen me through treatment, and they became my encouragement.”

Amelia set her sights on pediatric oncology because of the impact of the nursing staff who treated her. She walks the same halls she did as a patient, and one of her favorite nurses is now a co-worker.

“I like to tell people my story because I think my struggles can provide hope,” Amelia said. “I don’t enjoy being the center of attention and got used to keeping it quite for a long time. But since I’ve become a nurse, I try to open up when the time is right.”

Amelia loves to see kids smile, and it thrills her soul when a patient comes in and requests her as a nurse.

James Ludemann

James was a high-risk leukemia patient because he was older when diagnosed. He went through treatment during high school and already knew he wanted to go to medical school. But meeting so many nurses while he was in treatment cinched his choice to become a nurse.

After school, James started in adult oncology. But when he moved to Atlanta three years ago, he started working with children. He now works as a patient and family educator where he helps families navigate important issues such as fertility preservation.

“As I’m working with these families, it would be impossible not to think back on my treatment,” he explained. “But all cancer journeys are different, so I only share my experience if it can be an encouragement to them.”

James Ludemann

James was a high-risk leukemia patient because he was older when diagnosed. He went through treatment during high school and already knew he wanted to go to medical school. But meeting so many nurses while he was in treatment cinched his choice to become a nurse.

After school, James started in adult oncology. But when he moved to Atlanta three years ago, he started working with children. He now works as a patient and family educator where he helps families navigate important issues such as fertility preservation.

“As I’m working with these families, it would be impossible not to think back on my treatment,” he explained. “But all cancer journeys are different, so I only share my experience if it can be an encouragement to them.”

Liliana Haas

While in treatment for leukemia, Liliana had a nurse that made clinic visits fun.

“I was treated in Jacksonville, and my favorite nurse was named Christy,” Liliana recalled. “She took such good care of me and my parents that she became a part of our family.”

In high school, Liliana decided she wanted to become a pediatric oncologist. After starting as a pre-med student, she thought back to Christy’s day to day influence on her treatment. That is when Liliana made the decision to become a nurse. She says her experience helps her relate to the children she treats because she has been there.

“Celebrating the end of chemo is the absolute best,” Liliana said. “That is our goal for every patient. But it is bittersweet too because we’ve built relationship and have to say goodbye to them.”

Andi Reid

Andi’s treatment for a Wilm’s tumor went as well as it could go, even though she celebrated her fifth birthday by having a kidney removed. She had a nurse named Ashley who always volunteered to take care of her, and that left a lasting impression on Andi.

“I came for a check-up when I was a senior in high school,” said Andi. “I was sitting in the waiting room and a nurse walked by. It was Ashley; we recognized each other immediately. She was the reason I wanted to become a nurse.”

But Andi said the decision to go into pediatric oncology was a tough one because she wasn’t sure she wanted to put herself back in that battle every day.

“In the end, the kids are my reason,” Andi explained. “I love the kids and will do anything to see them go home at the end of treatment. That is the most rewarding part of my job.”

Andi Reid

Andi’s treatment for a Wilm’s tumor went as well as it could go, even though she celebrated her fifth birthday by having a kidney removed. She had a nurse named Ashley who always volunteered to take care of her, and that left a lasting impression on Andi.

“I came for a check-up when I was a senior in high school,” said Andi. “I was sitting in the waiting room and a nurse walked by. It was Ashley; we recognized each other immediately. She was the reason I wanted to become a nurse.”

But Andi said the decision to go into pediatric oncology was a tough one because she wasn’t sure she wanted to put herself back in that battle every day.

“In the end, the kids are my reason,” Andi explained. “I love the kids and will do anything to see them go home at the end of treatment. That is the most rewarding part of my job.”

We love all of the pediatric nurses and understand they are the glue that holds treatment together. We noticed a common theme with our nurse survivors: the impact of the nurses who treated them drove their desire to be nurses themselves. Every pediatric oncology nurse has the opportunity to influence their patients while treating them. And some of the most dedicated nurses of tomorrow might just be wearing a hospital gown today.

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.

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.

 

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