CURE Childhood Cancer is making a real difference in patient care by supporting the education and training for the nurses who care for children with cancer. The use of chemotherapy and biotherapy to treat childhood cancers has increased over the years as a result of research that has led to many new clinical trials. However, in order to safely administer these therapies to children and adolescents, highly specialized training is needed. CURE provides financial support for this training and thus impacts patient care in a very positive way.

Two years ago my manager and educator asked me to become an instructor for a new course, The Pediatric Chemotherapy and Biotherapy Curriculum. The goal of the course is to establish education standards as well as promote more consistent practices for the administration of chemotherapy and biotherapy to children and adolescents. Nurses are taught about cancer cell characteristics, pharmacokinetics, classification of antineoplastic agents and safe handling of the agents, ethical principles of chemotherapy and biotherapy and psychosocial issues related to treatment. They are also taught to assess, manage and teach patients and their families about chemotherapy and biotherapy.

After the registered nurse completes the course and passes an exam, he or she is nationally certified for a period of two years to administer chemotherapy and biotherapy. The nurse must then further demonstrate clinical competence through his or her institution on an annual basis.

At Children’s Healthcare of Atlanta, the nurse must complete a chemotherapy administration checklist under the guidance of a chemo certified nurse. Every two years, the registered nurse must retake an exam to ensure his or her knowledge, safe practices and competency.

The Aflac Cancer Center at Children’s Healthcare of Atlanta, because of its national prominence and patient population, must not only have a substantial number of nurses certified to administer chemotherapy and biotherapy, but must also have certified instructors who are approved to teach the curriculum and prepare other nurses for the exam. To become a certified instructor, a registered nurse must be a certified pediatric oncology nurse (CPON) with a bachelor’s or more advanced degree, have 2 years of experience, have completed the Pediatric Chemotherapy and Biotherapy Curriculum and passed the exam. The nurse then must attend a one-day course focusing on instruction in adult education principles, provider course administration, teaching strategies, and review of the provider course teaching materials. Once the nurse successfully completes the program, he/she receives an instructor certification that must be renewed every two years. To maintain certification, the nurse must teach a minimum of one class each year and complete the required documentation.

The curriculum is financially supported by CURE Childhood Cancer. CURE’s dollars support each registered nurse at Children’s Healthcare of Atlanta who either becomes a provider or an instructor. Without the financial support of CURE, we would not be able to offer the course to all our registered nurses so they have the opportunity to become nationally certified. As of today, CURE has sponsored more than 50% of our inpatient and outpatient staff to become nationally certified chemotherapy providers, as well as sponsored five registered nurses to become instructors. The goal of the Aflac Cancer Center at CHOA is to have all 130 registered nurses become nationally certified by the end of 2010. It is a goal I believe we will reach thanks to the generosity and foresight of CURE!

Thousands of KPMG LLP employees came together in more than 90 offices nationwide on Friday, December 4, to participate in a unique community service event which will combine the audit, tax and advisory firm’s support for literacy with charitable giving.

KPMG employees mobilized for “Operation Holiday Bear Hugs” to create over 22,000 holiday packages to be donated to local charities and hospitals for children. The holiday packages consisted of a new teddy bear, which employees assembled, dressed and adorned with a special holiday greeting for the child receiving the bear, and a brand new book.

The books were provided through KPMG’s Family for Literacy (FFL) program.

The Atlanta KPMG Office donated 200 bears to CURE Childhood Cancer for distribution at Egleston and Scottish Rite during the holidays. CURE would like to recognize KPMG for their volunteer efforts and thank them for all of the bears they have provided.

For many families battling childhood cancer, the holidays are particularly difficult. The financial burdens of battling the disease often make it difficult for struggling families to celebrate the holidays with gifts and special meals. Already under enormous stress, the inability to fulfill the holiday wishes of their sick child and siblings further burdens our families.

CURE’s Holiday Angels is designed to help families with children battling cancer who are in need of hope and help during the holidays. Working with the social workers at Children’s Healthcare of Atlanta, we match donors wishing to sponsor a family with families in need. In doing so, CURE helps to bring joy and hope to these special families.

For more information or if you would like to sponsor a family, contact Meri Long at meri@curechildhoodcancer.org

For Jenny and Tré Wilkins, Christmas can be especially difficult. They lost their beautiful four-year-old daughter, Catie, nearly three years ago to cancer. If there is a glimmer of light in the midst of such loss, however, the Wilkins credit a mischievous elf for providing hope and honoring Catie’s legacy.

While Catie battled the ravages of cancer treatment during the holiday season, she took solace in the make-believe world of Santa’s elves. She was given a special stuffed elf from the company Host an Elf, and that beloved elf was “responsible” for all kinds of mischievous acts, such as covering the kitchen in flour, pulling clothes out of Catie’s dresser drawer, and even spending a night in the freezer because he was homesick for the North Pole.

“Catie’s elf provided a way for her to escape the reality of cancer and enjoy the magic of the holidays,” explains Jenny Wilkins. “We had so much fun with that elf. Every day, Catie woke up eager to find out what her ‘silly elf’ had done while she slept.”

But the whimsical fantasy of holiday elves was inexplicably replaced with the harshest of realities when Catie lost her courageous battle just weeks after Christmas.

Desperate to get through the first Christmas without Catie, her mom searched stores and the Internet for affordable elves to give to some of Catie’s friends who were still battling cancer. When she found the company which made Catie’s elf, she called, asking if they would consider giving her a bulk discount. After hearing Catie’s story, the owners of Host an Elf were so moved, the company decided to donate as many elves as the Wilkins needed – and then, they decided to take it a step further. The owners worked with Jenny to create a program called “Elves from Catie” which honors Catie by allowing others to purchase an elf for a child with cancer, with 30 percent of the proceeds going to CURE Childhood Cancer earmarked for pediatric cancer research.

“Far too many children will be spending the holidays in children’s hospitals receiving cancer treatment, and ‘Elves from Catie’ is a powerful way to share a special gift with them and make a significant contribution to fund a cure for childhood cancer,” says Kristin Connor, Executive Director of CURE Childhood Cancer.

For more information or to donate an elf to a child with cancer, visit www.elvesfromcatie.com.

CURE Childhood Cancer knows how difficult it can be when a family has to celebrate the holidays away from home because their child is in the hospital.

We know there is no place like home but CURE wants to do what we can to help those families struggling during the holidays. That’s why we’ve created CURE’s Holiday Angels.

CURE’s Holiday Angels is a program that helps those families who have children in the hospital and are in need during the holidays. CURE sponsors families from Egleston and Scottish Rite. We match each family with a donor who buys gifts for the children and parents. Last year CURE sponsored eleven families, giving them hope over the holidays. This year we hope to help even more families. Join us in CURE’s Holiday Angels and bring joy and hope to a family who so desperately needs it.

For more information or if you would like to sponsor a family, contact Meri Long at meri@curechildhoodcancer.org

On September 19, 2009, Chris Glavine, wife of superstar pitcher Tom Glavine, will host the the 5th Annual “A Tribute to Our Quiet Heroes” luncheon. The event will pay tribute to mothers of children with cancer, whose love and tireless dedication guide their families through an unimaginable journey.

A silent auction will precede lunch and a presentation by Ruth Hoffman, mother of 21 year survivor Naomi and Executive Director of the National Office of Candlelighters Childhood Cancer Foundation. Following Ms. Hoffman’s presentation, a brief live auction featuring once in a lifetime experiences with the Glavine family will take place.

Reservations are $125 per person (except for honored mothers who are free of charge) and can be made at www.quietheroes.org. All reservations for honored mothers must be made by returning the invitation’s RSVP card to CURE. To check the availability of invitations, please contact Kristin Connor at kristin@curechildhoodcancer.org.

For more information about this year’s event, including a listing of auction items, to make reservations and/or to purchase a raffle ticket for a 54″ state of the art plasma television (donated by Design Media Group), a stunning diamond necklace valued at $7780 donated by Solomon Brothers and/or a MacBook Pro, please visit www.quietheroes.org.

Thank you to our generous sponsors:

HERO SPONSOR: AirTran Airways, The Glavine Family

CHAMPION SPONSOR: Jack and Donna Kennedy

SUPPORTER SPONSORS: Anonymous, The Coca Cola Company

GUARDIAN SPONSOR: Sylvia Tylka

FRIENDS SPONSOR: The Connor Family

CIRCLE OF MOMS SPONSORS: Taco Mac, Mike and Janis Vollkommer, Cindy and Bobby Bowers, Bonner Custom Homes, Joe Milano, Susan and Joe Miller, World Journal of Surgery, Jay’s Hope Foundation, Ragland & Jones Trial Attorneys, Harris Consulting

MEDIA SPONSORS: 11Alive, Atlanta Magazine

IN KIND SPONSORS: Incredible Southern Poundcakes (Kathy Shepherd, 770-826-0473), Heather’s Flowers (Heather Miller, 678-759-1100), Function, Atlanta Vinyl Binders, Inc., Lynn Crowe Photography, Paper Affair, Philosophy Cosmetics, Mary Kay (Nancy Harris)

HOW YOU CAN HELP CURE THIS MONTH

• Join us on Saturday, August 15, 2009 from 10am – 1pm at select Gymboree locations for “Play for CURE”. Children are invited to play for free! Donations to CURE Childhood Cancer will be accepted, and for anyone who signs up for a Gymboree Membership on August 15th, Gymboree will donate the entire $30 Membership Fee to CURE!

Participating Gymboree locations include: Alpharetta, Sandy Springs, Toco Hills, Mall of Georgia, and Marietta/West Cobb. Visit www.gymboreeclasses.com for more information on “Play for CURE.”

• Sponsor the attendance of a mother of a child with cancer to the 5th Annual “A Tribute to Our Quiet Heroes” with a donation of $125

• Purchase a raffle ticket for a 54” plasma television donated by Design Media Group, a $7780 diamond necklace donated by Solomon Brothers Jewelers and/or a MacBook Pro at www.quietheroes.org.

• Are you having a birthday? In lieu of gifts or cards, ask people to donate in your honor to CURE.

• Let your kids have a lemonade or snow cone stand in your front yard or at your community pool to benefit CURE.

• Donate Walmart, Target, Publix or Kroger gift cards to CURE for distribution to families in need.

Having joined CURE’s staff in September 2008, this year’s Annual Bereavement Weekend was my first, and what a powerful, moving experience it was for me. When I told friends and family I was working the weekend of January 24th and 25th, they asked what I was doing. I explained I was helping to put on a weekend for parents who had

lost children to cancer. Understandably, everyone had similar responses: “Wow that’s awful,” and, “That must be so depressing.” Not having been to a Bereavement Weekend before, I didn’t know what to expect. What I found was that there was more love and hope in the room with the parents in attendance than I had ever witnessed. These parents were truly grateful to have a setting in which to share memories of their precious children with other people who understood their grief. Sherry and Dirk Tucker, a remarkable couple from Orlando, Florida who lost their son Zach in 2007, shared their story and experiences with the group on Saturday. They were able to truly connect with the other parents and shared ways in which they have been able to move through their grief journey. The Tuckers inspired me with their belief that their purpose in life now is to help others work through their grief and find meaning in life after the loss of a child.

On Sunday, the second day of the workshop, Brenda Tuminello spoke candidly about her life in the decade after losing her only daughter, Stacey. She shared her story of going down a treacherous path and ultimately finding spirituality as her redemption. These stories and many others were shared among the attendees in small group discussions and throughout the weekend.

One of the most special aspects of the weekend was the candlelight ceremony, which included a slideshow of the children we remembered and honored. As a child’s name was called, his or her parent(s) lit a candle that had been specially decorated in remembrance of the child, while pictures of the child were projected on a large screen for all to see. The ceremony was moving and awe- inspiring, much like the rest of the weekend. The strength and resilience of the parents I met made a deep and lasting impression on me. They truly are heroes. The fact that they persevere and find meaning, hope and joy in life is inspirational. Many parents find joy and purpose in helping other families who have lost children to cancer. Others work passionately on the efforts to find a cure for childhood cancer so that other parents will not have to endure what they do. They all seem to find comfort and solace in their immediate family and friends and in honoring and remembering their child. It was a privilege to be able to share in that remembrance with them.

In the evaluations of the weekend, many expressed their heartfelt gratitude for being able to share memories of their child in such an accepting and compassionate environment. Parents also shared that Bereavement Weekend is a time that they look forward to each year. We hope to provide the support for these courageous parents for many years to come and to broaden our support in any way we can.

 By Meri Long, Interim Director, Patient & Family Services 

To receive information about Bereavement Weekend 2010, please contact Meri Long at meri@curechildhoodcancer.org or 770.986.0035 ext. 22

 For more info on CURE events visit our website

“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.

CURE Childhood Cancer is the proud Presenting Sponsor of the Atlanta Chapter of Flashes of Hope. Flashes of Hope is dedicated to creating uplifting portraits of children fighting cancer and other life threatening illnesses. The portraits, taken by award-winning photographers, help children feel better about their changing appearance by celebrating it. These beautiful portraits preserve forever the beauty, grace and dignity of the children photographed.

Flashes of Hope shoot dates 2009
All shoots are held from 9am-12:00pm

3/16     Scottish Rite
4/16     Egleston
5/12     Scottish Rite
6/9       Egleston
7/8       Scottish Rite
9/24     Scottish Rite
11/16   Scottish Rite
(Fall Egleston shoot dates tbd)

For more information please visit the Flashes of Hope website at http://www.flashesofhope.org/chapters/Atlanta/photos