Category Archives: Family & Patient Support

Christmas in July

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.

Desperate to get through the first Christmas without Catie, Jenny searched for a way to remember her daughter.   The owners of Host an Elf 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.

Last Christmas Elves from Catie, sent 537 elves into the arms of children who could use some comfort and raised $2,685 for CURE Childhood Cancer!

In anticipation of an even better 2010, Elves from Catie will be hosting “Christmas in July”. During July only, a 3rd elf will be donated for every two that are sponsored.

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

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Forever Changed -Helping Siblings Survive Cancer Too

By: Amanda Goetz, M.S., SuperSibs! Communication Program Manager

Although brothers and sisters of children with cancer do not experience the physical diagnosis of cancer, they are indeed profoundly affected by this emotional journey. The sibling struggle has been largely unsupported and unrecognized – grief from the loss of childhood as they knew it, loss of routine, affected friendships, a new definition of “normal,” and the roller coaster feelings of fear, hope, loneliness, anger, abandonment, guilt, jealousy and more.

A recent research study shows that 53% of siblings reported symptoms of Post Traumatic Stress, and 27% qualified for the diagnosis of Post Traumatic Stress Disorder (Alderfer et al). But there is good news. Much of this negative impact can be prevented. Research also indicates that siblings with more social support indicated significantly fewer symptoms of depression, anxiety, and fewer behavior problems than siblings with less social support. This high level of social support plays a protective role in psychological adjustment of siblings of pediatric cancer patients (Barerra).

Since 2002, SuperSibs! has worked to address this glaring need by providing vital support services to thousands of families facing pediatric cancer – to help re-define the “cancer sibling” experience and promote total family healing. Together with parents, teachers, social workers, nurses, child life specialists, religious and spiritual leaders, we can all play a crucial role in helping siblings heal.

Here are suggestions for parents to help siblings through the emotional roller coaster of cancer:

• Make certain that the siblings understand what cancer is, and the ultimate effects it might have…especially the fact that it is not contagious.  Talk on an ongoing basis, as your children mature and as your family’s situation changes over time.  Siblings who are not informed will often depend on their imagination or hearsay from others rather than the facts. Talking to your other children can help reduce unnecessary stress, guilt and anxiety. As well, these conversations can help build trust and hope as your family faces cancer together. Caring professionals are available to help you have these important conversations with your SuperSibs! children and teens. Just ask your hospital’s pediatric oncology social worker, psychologist, child life specialist or nurse to help you talk about the facts with each of your children

• Although a great deal of parents’ time and energy must be focused on the sick child, siblings must also be helped to know that they are as loved now as they always were and that their value as human beings and as members of the family has neither increased nor decreased because a brother or sister has cancer. One on one, ask your other children how THEY are doing. Then listen. Your SuperSibs! children and teens have hopes, dreams, disappointments and questions as well. They want to feel valued, heard and supported. Parents, teachers and other caring friends can make a tremendous difference to remind siblings how unique and important they are… just for being who they are.

• Avoid relying on older siblings as “another parent.” Over-burdening siblings with the major tasks of running the household can become overwhelming, as teen siblings also juggle school, work and their own emotional reactions to their brother or sister’s treatment. Siblings want to feel needed and supportive, but not overwhelmingly so with full adult responsibilities. Reach out to friends, neighbors and extended family to take on the extra chores such as grocery shopping, meal preparation, laundry, lawn care, carpooling
and other household needs.

• Inform the siblings’ teachers about what is going on at home. Many siblings spend more time with their teachers than with anyone else during the day. Teachers and counselors who are informed about what is happening in the teen or young child’s life as the family battles pediatric cancer can significantly help siblings cope throughout this difficult journey and better manage school work, social relationships and activities.

Most importantly, siblings and all family members are forever changed by pediatric cancer. With ongoing comfort, care, information and coping tools, siblings can not only “survive cancer”… they can face the future with added strength, courage and hope.

SuperSibs! provides services free of charge to honor, support and recognize brothers and sisters of children with cancer. As a national nonprofit organization, SuperSibs! brings comfort and care (via mail, internet and at cancer related events) to these “shadow” siblings in the U.S. and Canada between the ages of 4-18 (including siblings who are bereaved). In addition, SuperSibs! offers college scholarships to High School Senior Siblings of children with cancer. for more information or to make a referral, go to www.supersibs.org or call 866-444-SIBS(7427).

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CURE’s Direct Impact on Patient Care

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!

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KPMG Builds Bears for Kids

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.

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CURE Holiday Angels

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

 

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Elves From Catie

catieheart2-2For 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.

 

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CURE’s Holiday Angels

angelCURE 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

 

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