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Nursing & Caregivers

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.

 

CURE Appreciates Nurses

Screen Shot 2014-05-13 at 3.47.14 PMWhen your child is diagnosed with cancer, your world changes. Yes, there is plenty of hardship and heartache on the road to a cure. However, most families experience incredible support, too. As many of you can attest, sometimes the best support comes from the hardworking nurses who care for our children – and their parents! The bonds we form with the nurses are so special. As they care for our children with love and compassion, they tenderly educate parents and lend an ear – and a shoulder to cry on.

Last week was Nurses’ Appreciation Week, and we asked our CURE Facebook family to share with us how a nurse has impacted your life. Your heartfelt responses speak volumes:

“When my daughter was diagnosed with leukemia last year, the nurse came to work every day even on her day off until we left the hospital and made sure we left knowing everything would be ok. Any time we’ve had to go back she always goes and visits and talks to us to comfort us.” – Becky G. 

“I am so thankful for all the nurses in the Aflac Cancer Center at [Children’s Healthcare of Atlanta]. They took such good care of my son Ethan while he went through his treatments. They were like family to us. They were always there when you needed help. They lent a shoulder to cry on when you needed someone to cry with. If it wasn’t for the nurses, I’m not sure I would have made it through the tough journey. Thanks to all the nurses who had a strong impact on my child’s life.” – Beverly P.

“I remember the day Nolan presented, we were numb and were admitted to [the Aflac Cancer Center] at Egleston, and our nurse that night was so kind and gentle when she was asking all patient history questions. She ended up being on our team and became our favorite nurse. She made sure she was with us on Nolan’s last night in the hospital and we will be eternally grateful.” – Andrea G.

“Hospice nurses are the most compassionate, caring people. When my daughter was in hospice for 2 weeks before she passed away, I encountered beautiful angels taking care of her with the utmost respect. What an honor to watch them as they came in my home and did their “job.” My gratefulness to them will never be forgotten.” – Linda M.

‪”Mandy Hickerson – nurse extraordinaire (and smarter than anyone I know!) Lisa McCoy – a constant encouragement during hard times (and good times!) ‪Joy Jackson Gosdin – can make any situation better! And ‪Julie Metz – a mom who’s “been there” and still climbs in the trenches to serve! I love every one of them!!!” – Deborah D.

All the nurses at the Aflac Cancer Center at Scottish Rite are incredible. Kim was our amazing nurse for 4 plus years!!” – Terry T.

“‪Nicole Casto Giacosa has been the best nurse ever since my son ‪Scot has been fighting his cancer. Thank you Nicole for always being there for us!!!! You’re part of the family always.” – Trae S.

“Malak Kikhia’s beautiful smile touches many hearts every day, in and outside the hospital. Her positivity, her love of caring and her sense of humor are one of a kind! She truly is a hero in many ways.” – Rose W.

“Nurse Angie, during our daughter’s stay at CHOA before and after Tori’s brain surgery to remove her tumor. Angie was so sweet and caring, and she treated our angel as if she was her own child facing cancer.” – Todd S.

“The best RN was with us all the way from diagnosis to the very end making my son’s journey as good as it could get. We will love her forever for the help & strength she provided!” – Ellen S.

“Love my son’s team of nurses at [Children’s Healthcare of Atlanta] Egleston on the 3rd floor. You know who you are ladies. Thank you.” – Dana M.

“When my son was in ICU in Duke, he wasn’t going to make it. One nurse was so good to me; I depended on her. The day they cut off the machines, she came to hold me through the whole process, even on her day off. She stayed with me and cried with me I’ll never forget her. She was my angel.” – Allison K.

From the CURE Board and staff, we express our complete gratitude for the unwavering dedication and uplifting spirit of these inspiring men and women.

Pediatric Cancer Nurses: Angels Among Us

They are the bright spots, the smiles, the caring, the hope, at the time they are needed most.  Many parents of children with pediatric cancer refer to them as “angels.”  “They” are pediatric oncology nurses, and in May, CURE Childhood Cancer honors them and thanks them for being the special people they are.

Of course, they are trained to save children’s lives, to administer the chemotherapy which will hopefully get the child into remission and cured.  But with an illness which is often life-threatening, these nurses go “above and beyond” the call.  Sherri Ohmstede, Customer Service Liaison at the Scottish Rite campus of the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, says she is “honored” to walk alongside these nurses every day.

Terese Acker“These nurses are patient.  They build great relationships with the patients.  The bond formed between the patient and the nurses is an important one and makes their treatments more bearable.”

Pediatric cancer affects the entire family.  Often, the parents are more emotionally devastated than the patients themselves.  The nurses are a huge source of help and comfort to parents as well.

“I have seen a nurse spend 45 minutes at the end of a very long and exhausting day, explaining the day’s events to a very concerned family, or simply listening and empathizing with the family.  Often, this love and support is exactly what the family desperately needed at that very moment,” Sherri says.

Dayna and Alan Thomson lost their beautiful daughter Hayley to cancer in 2004.  But memories of their wonderful caregivers during that difficult time remain in their hearts.  Here is a passage about their nurses from a blog Dayna wrote while Hayley was in the hospital in August, 2004.

“We feel privileged to count many of these women as our friends.  These are the women who made the hospital FUN for Hayley.  The ones who put a piece of candy in the candy jar every day just for her, who played ‘peek a boo’ with her in the halls.  The ones who made having her temperature and blood pressure taken fun.  The ones who made such a fuss over Hayley that you would think she was the ONLY child in the hospital.”

“And here’s the thing…They do this for EVERY child.  Their hearts are HUGE.”

Bethany Lasky switched from being a labor and delivery nurse to pediatric oncology.  She is now at Children’s Healthcare of Atlanta at Scottish Rite.  She says this job is exactly where she is supposed to be.

“You are there for the heartaches and for the victories.  Children are so resilient and have such an incredible spirit.  They ultimately just want to be kids.  I could easily talk for hours about why I chose pediatric oncology and even more why I continue to love it.”

Sarah Goldberg is a pediatric oncology nurse at Children’s Healthcare of Atlanta at Egleston.  She says she wouldn’t want to work anywhere else.  The greatest gift of her job, according to Sarah, is helping families who are always overwhelmed at first by the diagnosis and treatment, to “find their way.”  Sarah says she is in awe of how a parent who looks so scared and confused in the first few weeks is an “old pro” at the treatment protocol in no time.  That said, the job has some devastating moments.

“There is no question that the difficult conversations are heart-wrenching and rough.  There is no easy way to sit with a family and tell them their child’s cancer has come back and there isn’t anything else we can give them.  These kids have done everything we have asked of them and they have fought long, hard fights.  They inspire me to keep life in perspective and remind me daily what is truly important in life.”

Jennifer Williamson believes that at times, pediatric oncology nurses are divinely inspired.  Jen lost her precious son, Jack, to cancer in May of 2011, after a courageous battle on the little boy’s part.  Among her memories of that heartbreaking time for her and her family, she has a beautiful recollection of Jack’s special nurses.

“We heard Jack’s last breaths on May 18th, 2011.  And while it was unthinkable, we never felt alone.  And in many ways, because of our experience with the nurses at Aflac, our faith was shored up even stronger.  With gratitude, we thank God for ALL the spectacular nurses of Aflac who helped us through one of the most profoundly painful, yet beautiful seasons of our lives.  Nurses who care for children with cancer, offer gifts of the souls that forever alter the patients and families within their care.  That divine level of excellence can never be taught.”

Nurse’s Week was May 6-12.  This year, CURE Childhood Cancer honored the pediatric oncology nurses with special treats and recognition on social media sites.  It’s a small way to say thanks to these wonderful people who give so much and work so hard to help the kids and their families touched by cancer.

Nurse Jennifer Stuart Shares Her Story

For many CURE Childhood Cancer families, nurses become family. While they care for sick children, they also seem to find a way to care for their entire families. Nurses know the power of a kind word, a caring touch, a sympathetic ear. They probe the depth of the human condition – the strength and suffering of the body, mind, heart, and spirit.

We would like to take some time to honor Jennifer Stuart, a nurse at The Children’s Hospital in Savannah. She has been a nurse for eight years and has a wonderful dedication to the children she treats! Below Jennifer shares a little bit about her experience.

“I always wanted to be a pediatrician. I can’t remember ever wanting to be anything else. But when I started college and had the opportunity to work with a doctor, I learned that they did not get to be as involved with the patients as I would like. I wanted to take care of patients at the bedside. So I changed my plans, and became a nurse. 

Jennifer Stuart I don’t really remember what sparked my interest in pediatric oncology, but it has always fascinated me. It is interesting and challenging. There is always something new to learn or experience. My favorite part of my job is the patients. Children are so resilient. They recover so quickly while adults just don’t have the same fighting spirit. It is my job to make them feel better. But I find that they often brighten my day as well. I have never second guessed my career decision. I love my job and wouldn’t want to do anything else.
 
I remember a specific patient that really touched my heart was a teenage girl with AML. She was a true fighter. While she was fighting cancer, she managed to maintain her good grades and not have to repeat a grade in school. She came to me during a follow up appointment to tell me she was going to college. I asked her what she wanted to major in and she told me nursing. When I asked her what kind of nursing she wanted to do, she said she wanted to be like me and do pediatric oncology. I gave her a hug and told her I was honored. I know she will be a wonderful nurse. I would be honored to work along side of her and call her a colleague. She is truly an amazing young woman.
 
As a pediatric oncology nurse, there are good days and bad days. We share in our patients’ lives on a daily basis. We share their joys and successes, like learning to remain calm during a needle stick or swallowing a pill for the first time. But with sharing their joys, we also share in their sorrows and disappointments. We are there when the doctors have to give bad news like a life-threatening diagnosis or a potential relapse. We are the ones who have to perform painful procedures and administer medications while children cry and ask us not to. Those times are especially difficult.
 
My number one goal as a nurse is to do the best job I can everyday. If I leave work for the day and know that I have done everything for my patients that I can possibly do, I feel like it was a successful day.”

Nurses’ Notes: A Nurse Manager’s Philosophy on Nursing

“Courtney, room 358 has called out for you,” the secretary advises. Although I know the call is coming, my heart catches in my throat. Slowly I make my way down the hall. I pause at the door knowing what I will see, but not knowing what to expect. It will indeed change my outlook on nursing forever.

Fresh out of nursing school, I came to the Aflac Cancer Center bright eyed and eager to learn. Although I question if this place will be right for me, and if nursing is the right profession at all, I feel confident that I will do well. After all, I feel like I have a good grasp on what nursing is all about. I have taken Pharmacology, Medical-Surgical, and similar courses. I have studied the theorists and philosophers from my field, and completed all my clinical rotations with ease. However, because the cancer unit is such a specialized field, I do feel a bit uneasy about the amount of information I will have to learn.

I quickly realize the amount of information that I must know is vastly overwhelming. I feel I will not be able to learn all this material over the course of my three month orientation. However, according to my preceptors, I adapt easily and have a good bedside manner. I am able to perform all tasks quickly and efficiently such as assessments, vital signs, interventions, and charting. I talk with the patients about their care, and I am kind, yet professional. I remember what I learned in nursing school, and do not want to develop the relationships further, for I might blur the boundary lines we must set in our profession. I work hard to complete all my tasks, trying not to leave anything for the oncoming nurse. To be a nurse means to address the patient’s healthcare needs. Some examples of these needs are giving the patient medications, assisting in activities of daily living, and completing dressing changes. I believe that being a nurse means that we are to assist patients to reach the highest level of wellness of which they are capable. This is what nursing is all about, right?

I slowly open the door, and see my sweet little Ali* lying in the bed. The room is dark, cold, and quiet, with the only sound being the IV fluids running through a pump. Sitting beside Ali is her father, Joe*, holding her hand and softly rubbing her arm. Memories of Ali quickly rush through my head. I remember the first time I saw her walking to the floor, the stubborn way she would not speak to me for the first week in the hospital, the way she rode her bicycle around the nurse’s station for exercise, how she loved to watch the movie Shrek, and how she loved to listen to music. She would make her dad and me sing “Somewhere Over The Rainbow” to her over and again. I remember all her completed art projects I have all over my refrigerator, how much she loves her daddy, her sweet laugh, and how much she would say “I love you”. I quietly sit on the other side of the bed and grab her other hand. She opens her eyes, and I smile. Her breathing is erratic and noisy as I say hello. She says hi and closes her eyes. Sitting with her, I realize that thirty minutes seems like an eternity. She opens her eyes again, and in her sweet voice asks her dad, “Who will take care of you daddy?” Her father softly replies, “You will baby, from heaven.” The four year old, content with that explanation, softly says “sing.”

It is at that moment that I have put it all together. My philosophy on nursing should not and could not just be to provide my patients with the highest level of wellness of which they are capable, but nursing is really so much more. Nursing is being able to put science and practice together with meeting a person’s personal needs. Nursing is not only about the science or completing activities and tasks, but it is about developing relationships with your patients in order to meet their needs. It is about listening and communicating with them on a level that makes a difference. It is being a teacher, an advocate, a confidant, and someone they completely trust. Nursing is about putting all the above together to guide your practice.

Ali’s father looks at me with his eyes filled with tears, and tries to sing. He opens his mouth, but no words will come out. I grab his hand and I begin to sing instead. A familiar tune fills the room. I know to this day that I made a difference in the life of this family. Joe has told me many times that out of all the nurses his daughter had, I demonstrated to him what nursing should truly look like. Do you think that Joe remembers the dressing change I completed every week, or the bed I changed daily, the Nasogastric tube I put down, or the chemotherapy I gave? Maybe, but what was most significant to him was that I knew him and Ali so well. Someone else may not have known at that most important moment, when there could be no words, what the real need had been. In the moment of her death, when he was unable, I softly began to sing “Somewhere Over The Rainbow.” To Joe, that made all the difference in the world.
*Names have been changed..