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The Real Meaning of the Festival of Trees

Posted by Primary Children's Hospital on November 27, 2013 in Hospital Events
The Festival of Treesby Linda Meier

Thirty-eight years ago, my family went to the Festival of Trees for the first time. It was 1975. Over the years, attending the Festival of Trees became a fun tradition. The Festival of Trees was our family’s kick-off to the Christmas season as our five children enjoyed the beautiful trees, music, scones, and of course, Santa. It wasn’t until 1990 that I came to truly understand what the Festival of Trees is all about when our only daughter, Nicole, asked a simple question. “Can we do a tree next year to help the sick children at the hospital?” The question took me by surprise. You see, SHE was one of those sick children at Primary Children’s Hospital.

A few days before Nicole’s 9th birthday, I noticed a small lump at the base of her neck. A doctor removed it and after a quick biopsy told us that it was probably a lymphoma. Additional tests were to be done at Primary Children’s the next week, but before that could take place, Nicole began to have trouble breathing. Our introduction to Primary Children’s Hospital began as she was admitted May 4, 1989. We were informed that Nicole had massive tumors in her head, neck, and lungs. Days later, the tumors had a name, Rhabdomyosarcoma, a fairly rare cancer of the muscle and soft tissues. The feelings and fears that overwhelm a family at such news are indescribable. Each day brought new challenges and disappointments. Each day we were grateful for any small miracle.

Nicole at Primary Children's HospitalAs I look back, I wonder how we survived those days. I have come to realize that Primary Children’s Hospital played a part in making it a little more tolerable. From the first day, I knew that Nicole was being treated by caring and loving people. As we sat waiting for the results of the scans, Nicole’s nurse sat with her arm around me, comforting me, long after her shift had ended. Nicole spent many weeks and months at the hospital. The wonderful nurses, doctors, nurse practitioners, and staff became a part of our family. After a particularly painful procedure, Nicole threw her arms around the doctor’s legs and said “Thank you”. Surprised, he said, “Why do you thank me for hurting you?” She responded, “You only hurt me because you love me and want me to get better.” Nicole knew the people treating her loved her and cared for her. She told me many times the hospital was like another home.

Nicole-002Our family had come to appreciate Primary Children’s during our stays, so of course, I promised Nicole we would donate a tree the next year. Shortly after the new year began, my husband’s employment was terminated and the Festival of Trees became even more meaningful to our family. Many of Nicole’s huge medical expenses were covered by the generous donations from Festival of Trees. Nicole was excited as she looked forward to decorating a tree to help pay back a little of what we had received, but her health worsened until she passed away just a month before the Festival. I just didn’t think I could decorate a tree that year, but I vowed to keep my promise to Nicole. I decorated one tree.

That was in 1992. It was such a beautiful way to remember Nicole and to feel of her love for all. My family and friends and I decided to do another tree the next year. This year makes tree number 22. We have so much fun doing the trees, that we have added wreaths and then quilts. Next year’s tree is already in the planning stages.

Our family’s kick-off to Christmas is still the Festival of Trees, though it means more to me now than it did before Nicole’s illness. There is something special about the Festival of Trees. Not only does it relieve the added stress of financial concerns by providing much needed funds to struggling families, but it changes the lives of those who so generously give of their time, talents, and money. Our family has been touched both ways.

I’m so glad I kept that promise to Nicole.

Festival of Trees Photo Gallery:

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Festival of Trees is December 4 – 7 at South Towne Expo Center, 9575 South State Street, from 10:00 a.m. until 10:00 p.m. Every penny raised through Festival of Trees goes to Primary Children’s Hospital.

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How to Teach Your Children Gratitude

Posted by Primary Children's Hospital on November 25, 2013 in Behavioral Health
how-to-help-children-be-more-gratefulby Sara Jackson, CSW
Primary Children’s Center for Safe & Healthy Families

Recent studies have shown that people who express gratitude actually become happier by doing so. A study in the Journal of Research in Personality (2007) found that over time, gratitude is associated with lower levels of stress and depression and higher levels of social support. Additional studies have shown that expressing gratitude enhances pro-social as well as moral behavior. Those who are more grateful may actually see their environments as more benevolent and make it so by helping others.

Learning to express gratitude in our adult lives is somewhat simple: we can integrate the act of gratitude into our daily lives by writing down what we are grateful for or sharing it with our families each night. But how can we teach our children to learn gratitude? Here are some simple suggestions for how to integrate gratitude into our children’s lives:

  • Have children draw or write thank you notes for every gift received (It teaches them to appreciate what they receive and that they will make someone else happy by receiving their art/note)
  • Work gratitude into everyday conversations (try modeling gratitude for your children by frequently stating what you are grateful for or things that you appreciate. This will help reinforce the idea of gratitude)
  • Assign household chores such as feeding the dog or stacking dishes (by having your children help around the house, they realize that things that you do on a daily basis take effort and they will appreciate your efforts more; Be sure to thank your children for doing the chore)
  • Encourage generosity (Donate gently used toys/clothes with your children or bake a cake for a sick neighbor; kids will usually be excited to have the opportunity to help others—especially if you talk about how grateful the recipient will be for their generosity)
  • Practice saying no to your kids (Kids frequently ask for toys, candy, more TV time, etc. If you say yes every time, it will be difficult for them to feel grateful for the small things. Saying no makes the times you say yes so much sweeter)
  • Schedule gratitude into your daily routine (Go around the dinner table and have everyone say one thing they are grateful for or appreciated that day or encourage nightly prayers)

By modeling gratitude for your children and encouraging them to incorporate it into their daily lives, you are promoting gratefulness, pro-social and moral behavior. In addition, studies show that those who express gratitude are actually happier! So, why not foster happy, benevolent children who aim to make a difference in others’ lives?

Sara graduated with her Master’s in Social Work from Portland State University, and is a Certified Social Worker. She is currently working towards becoming a Licensed Clinical Social Worker. She moved to Salt Lake City and has been enjoying getting to know the Southwest. In her free time, she loves hiking, biking, running, taking her dogs to the park, speaking Spanish, learning about other cultures, cooking, and creating self-serve frozen yogurt creations.
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Leading the Fight Against Childhood Cancer

Posted by Primary Children's Hospital on November 18, 2013 in Cancer, Children's Health

child with cancerApproximately one in 300 boys and one in 333 girls in the United States will develop cancer before their 21st birthday. While this rate has continued to increase for the past 50 years, the overall survival rate for children and teens with cancer has increased dramatically.

Primary Children’s Hospital is one of the nation’s top pediatric cancer centers utilizing a multidisciplinary approach that garners impressive results - our survival rate is over 85%, with some types of cancer at 100% - and also adds to our patients’ quality of life.

Inspired by the courage of our patients, Primary Children’s sterling reputation starts with the high-level expertise of our oncologists and the dedication of our researchers, who work tirelessly to develop and provide innovative treatment advances. The collaboration between our oncologists and researchers has allowed Primary Children’s to stay on the cutting edge of childhood cancer research and treatments. With more than 160 dedicated team members including nurses, social workers, pyschologists, child life specialists, and other support staff, we provide care to more than 180 new cancer patients and more than 800 previously treated patients each year, making sure that every one of them receives an array of support services and resources not always available in other centers.

Here are some of the ways Primary Children’s Hospital is leading the fight against childhood cancers:

Tailored Treatments

Research and innovation are vital to Primary Children’s successful cancer treatment plans. That’s why we are part of several national and international consortiums devoted to the advancement of research for a number of different types of childhood cancer, including:

Children’s Oncology Group (COG)
The world’s largest organization devoted exclusively to childhood and adolescent cancer research. Supported by the National Cancer Institute, this cooperative group sponsors clinical trials that have led to dramatic improvements in the treatments and survival for children with cancer.

Pacific Pediatric Neuro-Oncology Consortium (PNOC)
Works to understand how brain tumors develop in children and identify personalized treatment strategies.

Therapeutic Advances in Childhood Leukemia (TACL)
Provides a means for carrying out early studies of new drugs in children with recurrent leukemia or lymphoma.

The Neuroblastoma Consortium
Accelerates the identification of effective treatments for neuroblastoma and improves the lives of individuals and families affected by the disease.

The Sunshine Consortium
Develops new treatments for aggressive bone and soft tissue sarcomas.

Our participation in these groups and others gives us access to cutting-edge clinical trials and all the latest breakthrough treatment advances. Often, these advanced treatment protocols allow us to develop plans that eradicate cancerous cells without the sledgehammer approach of chemotherapy—making the treatment more effective with significantly fewer side effects.

Currently, 60% of our child and adolescent cancer patients are involved in clinical trials, and 100% are treated based on the advanced protocols that we’ve developed through the positive results of the trials.

Expert Staff

Primary Children’s has some of the top clinicians, researchers, and medical staff members in the country, who are all dedicated to meeting both the physical and emotional needs of our patients and their families. The hospital also offers access to world-renowned experts in multiple specialties to treat patients experiencing side effects caused by cancer treatment. Our cancer center has:

  • 17 full-time pediatric oncologists to offer care for every stage of cancer, from diagnosis to treatment through follow-up care.
  • 4 full-time researchers.
  • 6 fellows (physicians training to become pediatric oncologists).
  • 6 oncology nurse practitioners.
  • 2 PhD scientists.
  • 160+ staff members, including nurses, social workers, child life specialists, financial counselors, and more.

Robust Facilities

The Cancer and Transplant Unit at Primary Children’s offers cancer patients the latest equipment and technology in a comfortable setting. Every room on the unit is a private room with a bathroom, chair, television, and in-room sleeping accommodations for one parent. The hospital houses:

  • 33-bed inpatient unit
  • 14 clinic exam rooms
  • 9 infusion bays
  • 2 treatment rooms – one on inpatient and one in clinic
  • Specialized laboratory testing specific for children
  • Medical imaging machines designed for kids
  • Pediatric specialists in surgery, neurosurgery, ophthalmology, radiology, pathology, urology, neurology, gastroenterology, nephrology, transplants, and endocrinology

The hospital also has the new Ronald McDonald family room available for use, which includes showers, a kitchen, laundry area, and business area with internet access.

Other facilities designed for patient support include:

  • Children’s playroom staffed by child life specialists
  • Teen recreation room
  • Music therapy room
  • Interfaith chapel
  • Medical library

The ultimate goal in the fight against cancer is, of course, a cure. Until then, you can count on the dedicated staff at Primary Children’s Hospital continuing to use all the latest advances in technology and the knowledge we’ve gleaned from clinical trials to develop customized treatment plans that cover the physical, emotional, and pyscho-social needs of our patients and their families.

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Support for Teenagers Fighting Cancer

Posted by Primary Children's Hospital on November 12, 2013 in Cancer, Children's Health

Teenager with CancerThe physical challenges caused by cancer and cancer treatments are well documented. Less discussed are the emotional and social tolls of fighting cancer, particularly in teens and young adults. During this stage of budding independence, when socialization skills should be developing, cancer and cancer treatment takes over and completely disrupts lives.

Trying to integrate back into a normal routine after cancer treatment can be difficult. Often, teens feel isolated and may struggle with social interaction. Others may still be dealing with physical side effects that can be socially or emotionally inhibiting. Re-engaging with old friends can be awkward and some teens find that their friends have moved on.

Fortunately, Primary Children’s Hospital has a tremendous peer support group for teens and young adults called CREW, which stands for Courageous Reassuring & Enthusiastic Winners. Formed by teen and young adult cancer patients along with Primary Children’s staff members, CREW is the only support group in the area specifically for teens 13 and older. The primary purpose of CREW is to provide adolescents who have, or have had cancer, the opportunity to get together for food, fun, and social bonding activities. CREW offers cancer patients, as well as those who are finished with treatment, a welcoming and safe place to open up and share their feelings about cancer and the changes the disease has brought to their lives. CREW gives them opportunities to talk with other teens and young adults who know exactly what they are going through.

CREW meets once a month for a sometimes challenging—but always fun—activity. Teens and young adults who participate in CREW build lasting friendships and become a close-knit group where there is no judgment, only encouragement and support. Some activities involve parents and family members; others are just for the teens and young adults. All of the activities are well-staffed with social workers and other hospital or community specialists to ensure the safety of the participants.

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Recent CREW Activities Included:

  • Game night pizza party
  • River running
  • Yoga night
  • Laser tag
  • Hogle Zoo
  • Cross country skiing (via the National Ability Center in Park City)
  • Rock wall climbing
  • Dinner at Café Rio
  • Red Butte Gardens
  • Utah Museum of Natural History
  • Movie night with family, friends, and snacks.

Who Should Attend CREW Activities:

CREW activities benefit all teens and young adults who have had cancer, especially those who are having a difficult time getting back to their pre-cancer socialization levels. Current or former cancer patients who are withdrawing from interaction and are spending most of their time alone, or those experiencing long-term side effects, will find the help and support they need at CREW activities. Teens who have made smooth adjustments back to “normal” life are also great assets to CREW, as they understand the challenges associated with cancer and cancer treatment, and can provide needed friendship and support to their fellow cancer patients.

For more information about CREW and upcoming activities, contact Cathy Haskins at [email protected] or call (801) 662-4554. Ask to be invited to join the CREW Facebook page. (This is a private page, so you’ll need to be invited to join.) It’s a great place to chat with other CREW members, view photos of past activities, and stay updated on all upcoming events.

Those under 18 years old will need a parent to sign a release in order to get access to the CREW Facebook page.

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Story Lines: Porter the Superhero

Posted by Primary Children's Hospital on October 31, 2013 in Cancer, Children's Health
porterby Ashley Wood, Porter’s Mom
Rexburg, Idaho

By definition a challenge is an invitation to participate in a fight, competition or contest. Our family knew 2013 would be a year of challenges. We were prepared for a fight, but had no idea how difficult it would really get. My husband accepted a new job that would require months of training in a law enforcement academy. As a mother of four boys, I knew I would need help during his absence. We made the choice to move to Idaho - back to our home town - where grandparents, aunts, uncles and cousins could surround us with support. As the school year ended and summer began, we emptied our home on the Washington Peninsula, made the move to a new state, new school, new adventures and said goodbye to daddy, knowing our time together as a family would be scarce over the next ten months. A test for sure, but one we knew we could pass.

A month after the move our little Porter’s eye began to swell. Bumps and bruises are common when raising boys - especially a four year old. We didn’t think much of it. Maybe it was a bug bite from our last huckleberry picking trip in the woods, or a haphazard swing on the playground. A week of irritation made me worry he might have an infection, so I took him to the Optometrist. My biggest worry (at that time) was put to rest when the doctor said it was not an infection but more likely an allergic reaction. We left the office with some eye drops and resumed our summer activities. Another week passed and the right eye looked even more irritated and swollen, I made an appointment with a local Ophthalmologist. As the assistant began to examine Porters eye it was obvious his vision was compromised. The doctor continued the exam, but I knew before he even said the words “orbital mass” that we were facing something serious. The next day we were admitted to a local hospital for an MRI. The results were not what we hoped.

I called my husband and told him to catch the first flight he could to Salt Lake City, UT. We met at Primary Children’s Hospital where Porter was admitted to surgery for a biopsy. Later in recovery, I watched my husband hold our son, tears running down his face as the surgeons told us the mass was cancerous. On August 20th the mass was officially diagnosed as a granulocytic sarcoma and on August 30th he began treatments for acute myeloid leukemia (AML). Two days later my husband returned to Washington, our three boys remained in Idaho with loving family members, and I watched as Porter endured his first chemotherapy treatment in Utah.

Porter is not letting cancer stop him at all. A quote given to us by family sums up his spirit,

Superhero’s aren’t strong because they have a lot of muscles, but because they never stop fighting.

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Porter is a fighter, he is an inspiration, he is my SUPERHERO!! Superheroes like to keep busy so we utilize every resource we can to keep him entertained. During his inpatient stays he spends weeks in his room without leaving. Creativity is key; he likes to paint, color, read and play games. Like all young boys he is bouncing off the walls 24/7 (he is SPIDER-MAN after all!!). His favorite activity is jumping on the mini trampoline we borrow from physical therapy. He likes to see new faces and loves visitors. His favorite visitors are family, especially his three brothers. He is a budding movie director and likes to make movies in his spare time. The basic criteria is: If it makes him laugh, it is good!!

We are still navigating all that comes with being a parent of a child who has cancer. It doesn’t seem real. Months ago healthcare at meant taking care of my children’s minor cuts and bumps, a cold or an ear infection. Porter’s home health care needs now range from regular central line care - like saline flushes and heparin locks - to dressing changes and antibiotics administered through a broviac line in his chest. As ‘normal’ as these things have become there are some things I will never get use to. Watching him in pain and discomfort will never get easier, dividing my time between home and hospital will always be difficult. I have hope for the future but will never stop worrying about the possible outcomes of his disease.

With all that said, I am overwhelmed by the love and support we have felt. Extended family and friends, nurses, physicians and hospital staff have all made sacrifices on our behalf, lifting our burden in more ways than one. They cheer us on from the sidelines, they inspire us with their own triumphs over challenges, and we know we can make it. We have no doubt our sons health will be restored and look forward to the day we can look back, see how far we have climbed and continue to help others as they receive their own invitations to overcome adversity.

Story Lines is a feature on Play Ground telling personal stories and experiences – written by the individual. If you would like to share your hospital experience on this blog, please contact us.

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Where Do I Turn When My Child Has Cancer?

Posted by Primary Children's Hospital on October 28, 2013 in Cancer, Children's Health

child with cancer in children's hospitalThe initial signs can show up in a number of different forms—a mysterious lump on the neck, unexplained weight loss, fevers, fatigue, pain—but the diagnosis always hits like a sledgehammer. Your child has cancer.

Amidst your feelings of fear and desperation comes a strong parental instinct to protect and a steely resolve to do everything possible to make your child whole again. Fortunately, you have options. Cancer treatments for children have come a long way in the last 20 years with new breakthroughs happening all of the time. First you must grapple with the key question of what facility is best qualified to treat your child.

To answer that question, you need to know that pediatric cancers behave very differently from adult cancers. Children are not simply smaller adults — their developing bodies and brains respond differently to treatment from the ways an adult responds. What’s more, pediatric cancers can occur anywhere in the body, including the blood and lymph systems, brain and central nervous system, bones, muscle, liver and kidneys. To further complicate matters, pediatric cancer is not one isolated disease — there are over a dozen cancer types and countless subtypes that each require customized treatment based on numerous variables.

Because pediatric cancers are so markedly different from adult cancers, they are most effectively treated in children’s hospitals that specialize in cancer care. In fact, studies have shown that children, adolescents, and young adults treated for cancer in children’s hospitals have a 30% higher survival rate than those treated by oncologists in adult-oriented facilities using the same pediatric cancer protocols.

In addition to looking for a medical facility that specializes in pediatric cancer care, your choice of provider should meet the following criteria:

The provider should offer customized children-specific treatment plans or “roadmaps” that cover all aspects of bringing your child back to wholeness.

The focus should be not only to find a cure for your child’s cancer; the roadmap should also concentrate on preventing the lifelong damage that can result from surgeries, radiation, chemotherapies, and bone marrow transplants that may be needed to eliminate the cancer.

Even during treatment, cancer patients face all kinds of side effects, some uncomfortable and others life-threatening. That’s why your treatment plan should include comprehensive supportive care services that meet your child’s physical, emotional, and social needs.

The provider should have access to cutting-edge research and technology, and offer clinical trials.

There are new advances in cancer treatment that are discovered all the time. That’s why it’s essential to have access to the latest treatment options that are being tested in clinical trials. Look for a children’s hospital or medical center that’s part of the Children’s Oncology Group (COG), the world’s largest organization devoted exclusively to childhood and adolescent cancer research, uniting more than 8,000 experts in childhood cancer at more than 200 children’s hospitals across the world.

Clinical trials allow your child to receive innovative, cutting-edge treatments that may not be available to the general public for several years. A children’s hospital with access to the results of clinical trials is able to constantly refine treatments in order to improve outcomes and reduce negative side effects.

In addition to clinical trials, make sure that the hospital you choose does their own research on-site. A bench-to-bedside approach that integrates both scientific and clinical expertise takes the best ideas from the laboratory to the patient in the form of promising new treatments. In addition, pediatric oncologists use the results of specialized biologic and genetic studies of your child’s cancer cells to determine the best treatment plan for your child. Many of these tests are only available at a childhood cancer center.

The provider should have a multidisciplinary team of specialists who focus not only on the physical aspects of the disease, but also address the emotional needs of both the patient and his/her family.

There is so much ancillary care when it comes to treating cancer. Often the side effects of the treatment require as much ongoing care as the cancer itself. Look for a hospital with a treatment plan that includes social workers, psychologists, child-life specialists, music therapists, financial advisors, insurance counselors, and child-centered care.

Most importantly, take a deep breath and know that even though you and your child have many challenges ahead, pediatric cancer is not a death sentence — far from it. At Primary Children’s Hospital, pediatric cancers are successfully treated and cured in over 85% of the cases — for certain types of cancer, the survival rate jumps to nearly 100%. Because of our expertise and reputation for compassionate care, families with a child diagnosed with cancer come here from all over Utah, the West, and the United States to find a cure and to get back on with their normal lives as quickly as possible.

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Helping Your Teen Be a Better Driver

Posted by Primary Children's Hospital on October 22, 2013 in Children's Safety
teenager driving a carby Janet B. Brooks
Child Advocacy Manager

Your daughter will soon be celebrating her 16th birthday and has never been more excited than she is right now. On the other hand, as a parent you are grateful that you have brought her safely through life this far. But suddenly, you are in a state of panic.

For most teens reaching driving age is a rite of passage, a long awaited milestone. Sitting behind the steering wheel of a car is perhaps the most anticipated event of adolescence. However, for mom and dad, the fear of injury to their child, possible property damage, and perhaps a reasonably sane relationship between them and their child accompanies this milestone. Talk about a dichotomy.

I remember my father trying to teach me how to drive a stick shift. We are lucky that we weren’t launched to the nearest planet with my lack of knowledge and coordination. After prying my hands from the steering wheel and recuperating from my clumsy clutch whiplash, I did recognize that my father loved me, had a reasonable amount of patience, and ultimately wanted me to succeed. He placed emphasis on my safety, and the safety of others in and out of the vehicle. We were even able to speak politely to each other during the process, and found ourselves laughing and stressing out about this adventure together.

I was reminded of these adventures when I learned that this year’s National Teen Driving Safety Week theme highlights the important roles for parents and teens in the learning-to-drive process. The message is that it takes two to develop a skilled safe driver. Communication is clearly an essential element. As teens and parents talk to each other and set clear expectations of each other, the responsibility to accomplish the task becomes a joint venture. Teens want support from their parents and devoted parent time to supervise practice drives. They also want parents to exhibit safe driving practices themselves. Parents want their teens to follow safety rules and be responsible behind the wheel. So, both teens and parents join together to successfully contribute to the exciting/frightening learning to drive experience.

Research shows that parents often misinterpret driving skill deficits in their teen as intentional risk-taking or not paying attention. So instead of teaching critical skills, parents may instead become irritated and let out an unrepeatable phrase. My dad would nearly put his foot through the floorboard pressing down on the imaginary brake. As parents and teens recognize that unsafe driving is often a result of unpracticed skills such as speed management and hazard detection they can overcome flaws behind the wheel.

I survived the whole learning to drive experience with few battle scars. So did my dad. I hope that you will too!

Janet has worked as the Child Advocacy Manager at Primary Children’s for 15 years. She manages the Hold On To Dear Life® educational and advocacy campaign. Janet is a Child Passenger Safety Technician Instructor and an instructor in transporting children with special health care needs. She enjoys spending time with her family, including her husband, five children, three in-laws, and five beautiful grandchildren.
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