Jackie Miller, BSN, RN, OCN, founded Camp Oasis to help offer support to children like her nephew.

Jackie Miller, BSN, RN, OCN, was 8 years into her career when she was tapped to join other handpicked nurses to staff a new unit dedicated to oncology. That was 22 years ago.

“We had identified that we needed this, and it was a core group [of nurses] who were known for helping patients with cancer,” Miller recalls. Because the nurses were all at different skill levels, they also helped each other.

Today, Miller manages the New Jersey Cancer Education and Early Detection Program, which provides health screenings for uninsured residents of Burlington and Camden counties. Overseen by her employer, Virtua Health System, the program operates using state money and grant funding secured through Miller’s efforts. “We have different avenues for different diagnoses, but in most cases, we can provide Medicaid in 24 hours,” she says.

Miller is recognized as someone who can solve a problem when she sees it, which is how Camp Oasis, created for the children of southern New Jersey residents diagnosed with cancer, came about. When Miller’s sister-in-law died from breast cancer a number of years ago, leaving behind a son, the family tried in vain to find support for the boy. “We were at Christmas dinner after she passed away, and we said, ‘This is crazy that there are no resources for families with small children,’” Miller recalls.

Miller envisioned a camp for kids like her nephew, and the idea snowballed. When the Oncology Nursing Society took applications for a special grants project, Miller applied for the funds to create her camp. After she won the grant, she found that her colleagues were poised to get behind her and volunteer to lend a hand. Then, as she began to put the idea into practice, she discovered that the whole community wanted to help.

“When I tried to get space, they ended up donating it. Then, when I went to buy food, they donated it,” she says.

Camp Oasis, which now operates through the Virtua Foundation, provides a magical day for approximately 50 participants. The campers, aged 8 to 18, get picked up in the morning by limousine—a nurse rides along, just in case&mdash;and receive a bandana. After the opening ceremony, the campers are divided into 5 groups based on bandana color.

The children take part in all kinds of activities, including sports, crafts, and a group meeting with social workers who can help the campers open up about their fears. “The social workers are trained in this area to help the children talk to their mom or dad about what is happening,” Miller says.

Last year, a winter camp was added and offered 5 indoor sessions, including playtime with oversized Legos, theater improvisation, and activities at the camp’s indoor waterpark.

At the end of the day, each camper leaves with a folder for their parents that offers information about support groups and provides the phone number for a crisis hotline in case of emotional trouble.

“They are not alone,” Miller says of the children. “By the time they are in the limos going home, the kids are texting each other and getting phone numbers.”

Miller was nominated for a 2018 Extraordinary Healer

 award for Oncology Nursing by her colleague, Randi Solden, BS, RN, OCN, and honored as a finalist by 

. Miller continues to work to provide emotional support for the children of southern New Jersey residents diagnosed with cancer.

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Jackie Miller, BSN, RN, OCN, works to provide emotional support for children whose parents have cancer.

Camping for Health

Growing up in Memphis, Tennessee, Elizabeth Davis, BSN, RN, CPN, always knew that nurses and doctors at St. Jude Children’s Research Hospital cared for critically ill youngsters. Today, the hospital is the only workplace she has ever known.

With 5 years’ experience, Davis is a relatively new nurse, but her colleagues recognize her dogged determination to work for her patients and their families through a variety of councils, committees, and projects. During a fellowship at St. Jude, for example, Davis explored better ways for children to communicate their nausea levels by using the Baxter Animated Retching Faces (BARF) scale, an undertaking that reflects the values of a hospital committed to shared decision making.

“It is one of those things that [makes] you ask, ‘How did we not think of this before?’” says Davis, 27. “It is not a ‘yes’ or ‘no,’ but a scale the kids are living on every day. Zero means no nausea and 10 is serious nausea and vomiting.”

Davis explored better ways for children to communicate their nausea levels by using the Baxter Animated Retching Faces (BARF) scale.

After her project was finished and presented, it was implemented throughout the hospital, and Davis decided to stay in the fellowship role to mentor the nurses coming after her. “I helped the nurse who nominated me with her project, which looked at how nurses deal with fatigue while working,” she says.

Davis recognizes that many outside the hospital setting who hear about her job conclude that they could not deal with the pain of children and their families. But she handles this tough situation by giving her patients the best days she can, no matter what those days are like. “I try to understand this through the prism of childhood,” Davis says.

Due to her work, Davis understands what children are capable of, and in her estimation, they do not get enough credit. For example, some parents hold back health information from their children, particularly when the news is bad.

“The kids know, and they want to protect their parents. Near the end of life, they will be so worried about how their parents will take it,” Davis says. “They aren’t scared. They tell me they are going home to see Jesus, and they are excited. I have seen kids who see angels and talk about their loved ones who have died before them.”

The field of oncology seemed a natural fit for Davis from the first time she treated a patient. Since then, she has worked with patients from all over the world and looks forward to helping many more.

This year, Davis was honored as a finalist for the Extraordinary Healer® award for Oncology Nursing program conducted by CURE®, a sister publication to Oncology Nursing News®.

“The nurse who nominated me [Anna L. DeVine, BSN, BA, RN, CPN, a colleague from St. Jude’s] is the one I want to grow up and be,” Davis says. “She has the same drive to improve care. She is incredibly involved on many hospital committees, and she is inspiring. She is so special and opens her heart to every patient and caregiver.”

Elizabeth Davis, BSN, RN, CPN, is inspired by the strength she sees in her small charges.

 

Nursing Through the Prism of Childhood

For Christine Stone, MSN, RN, OCN, oncology was the only choice. After completing an externship between her junior and senior years in nursing school at Inova Fairfax Hospital in Falls Church, Virginia, she accepted one of just 2 new graduate positions there. "The position being offered happened to be on the oncology unit," she says.

Twenty-seven years later, she remains committed to oncology, which she now describes as a calling. As a nurse navigator, Stone says, she learns something every day on the journey with her patients from diagnosis to survivorship.

During her tenure as a nurse, Stone earned her master’s degree and oncology certified nurse accreditation and has implemented evidence-based practices to help both patients and colleagues. She has held numerous positions besides her current one, including inpatient nurse, stem cell transplant coordinator, and radiation oncology nurse. She also mentored colleagues as an oncology nurse educator, and although she found it rewarding, she tremendously missed working directly with patients. Overall, she says, each role helped her to become a better nurse navigator.

Through the Life with Cancer program, Stone blends her love for teaching with patient care. This nonprofit organization, an integral part of the Inova Schar Cancer Institute, provides wellness and educational programs for patients and their families. She also facilitates monthly support groups focused on breast cancer and women’s survivorship.

Stone connects with community resources and foundations that provide support to cancer patients in varying forms—postoperative mastectomy baskets, transportation, house cleaning, food delivery, and crisis funds. "I have seen over and over again the support these foundations provide patients and the impact it makes on them as they go through their treatments, just to know someone in the community cares," she says.

Stone’s commitment extends to her family. She and her husband of 22 years were high school sweethearts who now have 3 children— young-adult twins (a son and daughter) and a 16-year-old son. All are very involved with cancer-related fundraising events, Stone says, and her daughter is considering a nursing career.

Guided as a nurse by her strong faith in God, Stone also believes that the devastating news of a cancer diagnosis can produce some gifts. "These are not always seen or understood immediately, but the random acts of kindness—the outpouring of support shown by complete strangers, friends, or families&mdash; can truly be a gift to many," she says.

A participant in many major events in her patients’ lives, Stone has attended weddings, graduations, parties and funerals. Recently, she helped a patient, who had been fighting metastatic breast cancer for years, to share a milestone moment with her daughter. “During the last year of her life, I got to know her, since she was hospitalized a lot,” Stone says of the patient. “She always tried to keep things normal for her 3 girls.”

Stone knew that the patient was nearing the end of her life, and when she learned that the woman’s youngest daughter would soon graduate from high school, Stone helped bring the graduation to her. She phoned the high school principal, as well as the counselor, some teachers and other staff members.

Wearing caps and gowns, they came to the hospital and awarded the student her diploma at her mother’s bedside. The principal read letters from the daughter’s teachers, the cafeteria made a cake, and members of the hospital’s music therapy program played in the background. "It was so wonderful," Stone says. Her patient died that night.

Christine Stone, MSN, RN, OCN, winner of the 2018 CURE Extraordinary Healer in Oncology Nursing award, sees her work as her calling.

Oncology: The Only Choice

For Sara Sargente, RN, OCN, it was the middle of the night when she heard her calling to be an oncology nurse. From a young age, she had known she would be a nurse as she watched her grandmother leave for work in her starched white uniform and cap. But it was another moment that clarified oncology nursing as her calling.

Sargente was only 13 when her grandfather was sent home on hospice for his final days after being diagnosed with colon cancer. She and her mother, an EMT, were caring for him, answering the tiny bell they had given him to ring for care.

“I was sleeping downstairs one night, when I heard the bell,” she recalled. “My mom didn’t wake, so I went to help him by myself.” Sargente had no fear that night, she said, nor was she afraid when he died a few days later. Instead, she experienced a comfortable feeling as the family played his favorite songs and he closed his eyes for the last time.

While caring for him that night, Sargente said she knew that her career in nursing would be as an oncology nurse, a vision she did not relinquish, even when everyone in nursing school told her she would have to do a few years of other, more basic care before going on to oncology. Indeed, her first job was as a floor nurse in a general surgery unit. After only a few months, however, she applied for an oncology position at another hospital across town. It was a longer drive, but she knew it was where she belonged.

Sargente worked in radiation for a few years, when a mentor tapped her to apply for a position as a nurse navigator for patients with head and neck cancer at the Orange Regional Medical Center, in Middletown, New York. “They go through so much with this cancer,” she explained. “It is so very difficult, and their quality of life is affected. They can’t go out to eat with their family and enjoy the simplest things that we take for granted.”

Often, she goes to see patients at home, relieving them of the lengthy drive many of them must take to get to treatment. She facilitates a support group through the organization Support for People with Oral, Head and Neck Cancer, and she became certified in blood management to respond to the needs of Jehovah’s Witness community members who do not allow the use of any blood products during surgery. This year, she is beginning her second term as president of her local ONS chapter, which she helped found to provide a closer group for area nurses.

“We have a core group of nurses here who are so loving and compassionate. They are not worried about themselves but keep asking what we can do for the patients,” she said. Sara oversaw a fundraiser that brought in $10,000 the first year the chapter was in operation. The group established a fund called Acts of Kindness, and any patient could apply. Last year they raised $15,000.

“Instead of giving it to nurses, we all decided we wanted to support the patients with $100 gift cards for gas or prescriptions or whatever they needed,” said Sargente. “For example, one woman who had a mastectomy needed a button-up-the-front shirt. We have patients who are so poor, they cannot buy their medicine.”

Sargente is supported not only by the hospital but also by her family, her husband, and 4 children. The third-generation healer in her family, she is watching the fourth generation prepare that role as her daughter trains to be a radiation therapist—in oncology, of course.

Sara Sargente found her calling at age 13, caring for her grandfather who had cancer. This oncology nurse navigator and winner of CURE® magazine's 2017 Extraordinary Healer® Award has never looked back.


Oncology Found Her: Going the Extra Mile for Patients With Head and Neck Cancer

Deborah K. Mayer, PhD, ANP-BC, recalls the breast cancer patient she counseled about treatment options. “She wanted to know which treatment, a mastectomy or lumpectomy and radiation, would keep her away from home the least amount of time since her husband was on hospice, dying of lung cancer.” Mayer shared with her that the mastectomy would be less time since the daily radiation treatments would require travel and treatment time each day. This is a snapshot of patient-centered care, Mayer says.

Mayer, the Director of Cancer Survivorship for the University of North Carolina Lineberger Comprehensive Cancer Center, also serves as the 2017 chair of ASCO’s Survivorship Committee. At this weekend’s meeting, she has focused on the importance of the survivorship care plan, as well as the role of the primary care provider (PCP) in follow-up care.   

Mayer says that providing the SCP at the end of treatment is insufficient, and that it should be provided as a treatment plan at diagnosis and then filled out as the treatment progresses. She also recognizes that this is probably a pointless fight since getting the plan introduced at the end of treatment has been hard enough. She presently estimates that somewhere around 70% of patients don’t receive a care plan and in too many cases when they do, it’s a piece of paper with little meaning because there was little discussion.

When they sit down with the nurse or oncologist, it is a time to review questions and concerns that may not have been raised during treatment.

“In one instance I had a patient who had numerous side effects that affected her treatment. Peripheral neuropathy and fatigue, both of which she understood were connected to treatment, but she didn’t know whether she could expect the side effects to resolve on their own and if so, how long it would take.” Mayer also says that the discussion helps to normalize what recovery looks like and help them process what they had been through psychologically, which could take a year to resolve.   

For follow up, Mayer says the cancer community is struggling with the roles in follow up for the oncologist and PCP. “We have created a dynamic where the patient wants to be followed by the oncologist; it’s good for provider and patient to have a close connection, but it isn’t sufficient,” Mayer says.

In addition to leaving out the PCP, it can create distrust, which makes it harder for the patient to return for continuation of care in areas not related to cancer, Mayer says. It is important not to diminish the role of the PCP or to think the oncologist is the only one who can do follow up. 

We sit in our own camps and that is not acceptable. It should be that patients are told by their oncologist that they need to go to their PCP for primary care throughout cancer care.   

Patients have multiple comorbid conditions and we are not managing them during treatment.   

Depending on the cancer and the care needed, the transition may be longer or shorter. but there needs to be a gradual transition from oncologist to primary care.   

“We need to improve cancer care to add survivorship,” Mayer says. “And we can’t wait the decades that it usually takes to get this right. We need to be aware that we are delivering care to the best of our ability and moving the system forward. Patients don’t get 'do-overs.’ We get them with every patient we see and we need to make it better each time.”

Deborah K. Mayer discusses the future of survivorship care for patients with cancer.

Expert Urges No Silos in Providing Survivorship Care

I was diagnosed with cancer in October and began chemotherapy at the beginning of November. The traditional month of food and family was one that I always looked forward to.

I loved to cook large meals for my family much more than the day-to-day dinner. Because no one told me that I wouldn't have the energy to get off the couch, and because I was doing the "I am woman” routine, I made the usual plans to host Thanksgiving at my house with a Normal Rockwell turkey and all the trimmings—for 15 people. 

If you have not run across the "I am woman" routine, that is when we refuse to admit that we have cancer. Instead of accepting that we are facing a life-changing disease, we look at it as a mild inconvenience. Our identity is caught up in events such as Thanksgiving and Christmas. Creating the perfect Thanksgiving dinner told me I would live and I was still needed and all would be well.

It was insane, but look at the other part of what Thanksgiving and Christmas are to the woman in the house. This is our time to shine. It's the ultimate in multitasking for the American mother. There is calm in the kitchen and a turkey in the oven. I can recall thinking that I would make Thanksgiving happen come, as my father would say, "hell or high water."

I was the oldest daughter in my family and everyone knew if I said I was going to do something, I would. This changed with cancer. Never before had I dealt with something that I could not overcome in fulfilling what I wanted to do. This was a first and it was scary. And why should my family think any different. When they asked me how I was, I said, "fine, fine."  Of course you know that FINE stands for. It's an acronym for frustrated, insecure, nauseated and exhausted. I told my family I was  fine, and they believed me.

I don't think I actually made it through shopping for dinner before having a breakdown in the grocery store when I accepted the reality that I couldn't do Thanksgiving. I couldn't do the shopping because I couldn't remember what I needed to buy, and when the smells from the bakery in the store hit me it was far from the usual pleasure. It made me sick to my stomach.

I didn't have the energy to pour a glass of milk, much less serve dinner for 15. And, since the nausea and vomiting had settled in at that point, I would have had to take some time off between courses to vomit my brains out before serving the next course.

Accepting this reality was as big an emotional reality as physical. So if I couldn't care for my baby or make our traditional dinners, what good was I?

Kirtley was only a year old at that point and could have cared less where or what we ate, but I cared.

And let me add that if the person with cancer is the husband or children, we wives and mothers are doing our best to keep things normal for them. But be careful. You are probably just as exhausted as they are, and trying to do the traditional dinner is still going to take more than you have in terms of energy.

The best thing to do is be honest with yourself whether the patient, the spouse or the child. Communicate about where you are and what is important to you. Find ways to meet everyone's expectations, perhaps planning new traditions. Yet, it is important that everyone has permission to express their feelings whether it be joy, fear, sadness or pain. Children may need to grieve the loss of a family tradition.

If the Friday after Thanksgiving has always been a family shopping day, reconsider. Suppressed immune systems have no place at the mall where every germ known to man resides.

If Thanksgiving has always been a time to face the masses at the mall, this year the shopping may have to be online. If you lost someone, spend time talking about him or her and sharing memories. Releasing balloons is a visible and colorful way for young children to remember someone.

Thanksgiving revolves around food, and families often have favorite recipes they prepare together. If mom can’t do it this year, it could be that the recipe could be modified to make it easier. Instead of making the cookies to decorate, buy them and then decorate the premade cookies.

Take care of yourself if you are the caregiver. Get exercise and eat well. Take a hot bath or have a nap. Find distractions such as going to the movie with the kids while your sick family member sleeps. Plan ahead and make time for rest.

Probably the most important of all aspects of getting through the holidays is that when friends and family ask if they can help, SAY YES. A friend of mine heard her husband telling a friend that they were fine and didn't need help. She grabbed the phone from him and said, "he may not need help, but I do."

We pride ourselves on never needing or asking for help. This is ridiculous. To ask friends and family to do something helps them feel better about what you are going through. Let them help. Make a list of things that need to be done. Grocery shopping, picking up the kids for a movie, renting a hard to find movie. It is OK to ask for help. I had a friend who asked her best girlfriend to bring her a new nail polish every week. This gave the friend something fun to do and my friend looked forward to that new bottle of polish with anticipation. She and her teenage daughter had fun painting her toenails in exotic colors.

It is also fine to say NO. People who have never dealt with cancer may think they have the perfect answer to what you need. If it isn't, then say no. And give them an alternative. For example, one family I know got together and rented a small party room at a local restaurant for Thanksgiving before asking if my friend wanted to do that. Surprises are not what anyone needs when they feel rotten.  They told her they had a surprise and that all she had to do was get dressed.

She did, and when she arrived to find 20 friends and family and their children running around, it was more than she could handle. She didn't want to be there and she knew she was risking her health every time someone sneezed in her face. She called her husband over and they left.

At the root of all this is communication. If your sick family member cannot think about it, take it over, but ask first. If the planning is what she or he loves, then help them with that and then delegate all the tasks to make it a Thanksgiving to remember.

Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.

Kathy LaTour shares her holiday experience with cancer and the tips she's learned since.