She’s resilient: 11-year-old faces Ewing sarcoma

Auburn Retreat Family Pic

Part of Maddie’s resilience may come from the way her family deals with her disease. “We don’t make life about the cancer,” her mother, Amy Shaw, explains. Her sister, Alexis (left), and Maddie are shown enjoying a respite with their mom and dad and Chesapeake Bay reliever, Mocha, in Auburn in late spring. (PROVIDED PHOTOS)

BY AMBER SMITH

Maddie Shaw is covered with a plush purple blanket. She grasps an iPad Mini, on which she quietly battles digital zombies, while the last of her chemotherapy flows into her arm.

It’s a Friday at the end of May, and the sixth-grader from Binghamton is completing her cancer treatment.

Nurse Tara Ingersoll has marked the occasion with colored streamers and fringed pom-poms hanging from curtains in the Upstate Cancer Center. Maddie’s parents, Amy and Kevin Shaw, brought cupcakes and a fruit bouquet. Maddie, age 11, is reserved, engrossed in her game.

A woman leaps into her room. She’s got jazz hands, zebra sunglasses and a fervor that captures Maddie’s attention. The girl’s eyes abandon the electronic screen; her face melts into a smile. It’s Jody Sima, MD, her pediatric oncologist.

IMLP4

On Maddie’s last day of chemotherapy, her father, Kevin Shaw, spent almost five hours riding his bicycle to the Upstate Cancer Center form Binghamton, as part of his training for the Ironman race taking place in July in Lake Placid. He is part of a team of athletes who participate to support Maddie. They wear shirts that say, “It’s not when you finish but why.”

“I push her when she needs to be pushed and love her when she needed to be loved,” Sima explains. Today the doctor leans over Maddie’s shoulder. The two confer privately about the best strategies for defeating the horde of zombies.

Maddie’s diagnosis came in December 2013 after she felt a pain in her hip. Doctors discovered a tumor the size of a softball in her lung. It was Ewing sarcoma, a rare bone cancer. After months of chemotherapy, Maddie underwent surgery in Philadelphia on her left hip. She was in remission until August when the cancer returned.

She renewed her cancer battle, which this time included surgery on both lungs. A month later, fire broke out in the basement of her home, killing Maddie’s hamster and destroying nearly everything her family owned.

While their house is being rebuilt, Maddie, her parents and sister, Alexis, 16, live in a nearby rental home. Her mom and dad took turns driving her to Syracuse for chemotherapy every day for a week, every three weeks, while she was in treatment. This allowed her to attend school in the morning and sleep in her own bed each night.

Sima says Maddie is doing well. “She is a pretty amazing kiddo, and she bounces back quicker than any adult ever would” the doctor told the Binghamton Press & Sun-Bulletin.

Despite missing lots of school this year, Maddie made the high honor roll.

cancercaresummerThis article appears in the summer 2016 issue of Cancer Care magazine.

Posted in adolescents, bones/joints/orthopedics, cancer, community, health care, illness, patient story, surgery, Upstate Golisano Children's Hospital/pediatrics | Leave a comment

Quality or quantity? Serious illness prompts serious discussion

Ajeet Gajra, MD, in the second-floor lobby of the Upstate Cancer Center. (PHOTO BY ROBERT MESCAVAGE)

Ajeet Gajra, MD, in the second-floor lobby of the Upstate Cancer Center. (PHOTO BY ROBERT MESCAVAGE)

BY AMBER SMITH

Some doctors are reluctant to recommend palliative care, particularly for patients who are younger than 65 and dealing with a serious illness.

The shift from lifesaving treatment to comfort care may seem like admitting the futility of the situation.

That would mean admitting the futility of the situation, considering the patient’s quality of life and its length, and perhaps shifting efforts from life-saving to comfort care.

“It’s understandable” that doctors may wish to avoid such conversations, says Ajeet Gajra, MD, a medical oncologist at Upstate who researches the utilization of palliative care. “The doctor may know there are no other meaningful treatment options but is afraid to say that to the patient and the family.

“It’s a difficult discussion for the doctor, patient and family, so it’s often avoided. Patients may feel that the doctor is ‘giving up’ on them. It is important to have an open discussion about the patient’s hopes and wishes in the context of a limited prognosis. It is important for patients to realize that such a recommendation is being made because further treatment will cause more harm than good and that the doctor cannot put the patient knowingly in harm’s way.”

The discussion may be that much more difficult when it centers on a young patient. Regardless of the patient’s age, Gajra says, education and information regarding palliative care should be offered early in the course  of an incurable cancer. That way the patient and loved ones do not feel blindsided in the course of their fight if it’s clear that medical treatments will not help further. The patient or their loved ones can bring up a discussion regarding palliative care if the doctor does not.

In a paper published in the Journal of Geriatric Oncology this year, Gajra and four colleagues from Upstate studied the medical records of veterans with advanced cancer near the end of life. They compared those older than 65 with those from 40 to 65 years of age and discovered the older veterans were referred to palliative care an average of 12 days sooner than the younger. Younger veteran’ average time in hospice care was 13 days longer.

Gajra says other studies show that patients may have a better quality of life if they are in hospice care at their homes, rather than hospitalized in an intensive care unit, or seeking emergency care for each medical setback.

Studies also show that while timely palliative care enhances a patient’s quality of life, it can actually extend his or her length of life.

Choosing quality

Palliative care focuses on providing relief from symptoms of serious illness, rather than trying for a cure or recovery. Similarly, hospice care is meant to keep patients comfortable and pain-free during advanced illness. Both are designed to improve the quality of life for the patient and his or her loved ones.

Upstate options

Palliative care is an option for adults and children who are treated at Upstate University Hospital. Referrals are also routinely made to Hospice of Central New York. An outpatient palliative care program for adult patients with advanced cancer will start this fall.

cancercaresummerHLOA-4C-VERT-REVThis article appears in the summer 2016 issue of Cancer Care magazine. Hear an interview with Judy Setla, MD, medical director of Hospice of CNY, about hospice and palliative care. 

Posted in cancer, community, death/dying, grief/loss, health care, HealthLink on Air, illness, research | Leave a comment

A 50-year anniversary: Meet one of Upstate’s oldest living pediatric brain tumor survivors

Michelle "Shelly" Kikta-Kiner, at home with her grandchildren, Cole, 8, and Rowan, 7. (PHOTO BY SUSAN KAHN)

Michelle “Shelly” Kikta-Kiner, at home with her grandchildren, Cole, 8, and Rowan, 7. (PHOTO BY SUSAN KAHN)

BY AMBER SMITH

Some of the details are fuzzy, but 50 years after her treatment for a brain tumor at Upstate University Hospital, Michelle “Shelly” Kikta-Kiner, 62, still considers her survival a miracle. The Verona woman is one of Upstate’s oldest living survivors of a pediatric brain tumor.

She was 12 in 1965 when her nose began bleeding sporadically. She developed headaches. Then she had episodes of projectile vomiting. Her mother took her to a local doctor.

Shelly during treatment for a brain tumor in 1966. (PROVIDED PHOTO)

Shelly during treatment for a brain tumor in 1966. (PROVIDED PHOTO)

Around the same time, Kikta-Kiner’s aunt had a benign brain tumor removed at Upstate University Hospital. She mentioned Kikta-Kiner’s symptoms, and the surgeon agreed to see the young girl.

Kikta-Kiner remembers spinal taps and painful testing to locate the tumor, monthslong hospital stays and a giant teletherapy machine.

Medical advances since then have provided better ways to locate tumors, says Lawrence Chin, MD, chair of the neurosurgery department at Upstate Medical University.

The painful test Kikta-Kiner described was a cerebral ventriculogram, something that seems barbaric by todays’s standards. It involved tapping into the spinal canal to inject air, and then tipping the table, so the air would travel to the patient’s head and outline the fluid space in the brain. This would reveal growths or structural changes in the brain, but it created severe headaches for the patients.

Though that equipment hasn’t been used in more than four decades, “the basic concept is still the same,” Chin says, explaining that magnetic resonance imaging scans now guide surgeons in brain biopsies.

Shelly's self-portrait at age 12, before she got sick and lost her hair.

Shelly’s self-portrait at age 12, before she got sick and lost her hair.

Radiation and chemotherapy remain standard treatments for brain tumors.

The machine that Kikta-Kiner remembers, from which she received the radioisotope cobalt-60 to kill tumor tissue, was the forerunner of today’s gamma knife, which uses cobalt radiation. “I had a lot of radiation, like 30 treatments,” she says. She missed all of eighth grade. “When I came home, my Dad got me a wig, and I went back to school.

“When I first came home, my gait was off, and my left hand shook,” she says. “It’s still not as fast as my right hand, but to look at it, you wouldn’t notice anything wrong.”

Since then, Kikta-Kiner has lived a full life. She went to college, married and in recent years has dealt with other cancers. In 2006 she had her thyroid and a nearby lymph node removed. Later, doctors removed a cancerous polyp from her intestines and treated a skin cancer on her ankle.

For a while after her childhood ordeal, she dealt with depression. Fifty years later, she has the reminder of a bald spot on her head – and the belief in her heart that her survival was a miracle.

cancercaresummerThis article appears in the summer 2016 issue of Cancer Care magazine.

 

Posted in adolescents, brain/spine/neurosurgery, cancer, depression, health care, history, illness, medical imaging/radiology, patient story, surgery, technology | Leave a comment

Early detection of cancer appears to improve survival odds

SOURCE: ONONDAGA COUNTY COMMUNITY HEALTH ASSESSMENT AND IMPROVEMENT PLAN, 2014-2017

While the incidence of cancer is rising, death rates are dropping, presumably because of improvements in screening that allow for earlier detection and improvements in cancer treatment options. This chart shows the rate, per 100,000 people living in Onondaga County, of all types of cancer combined, showing incidence (new cases) and mortality (deaths).

cancercaresummerThis article appears in the summer 2016 issue of Cancer Care magazine.

Posted in cancer, community, death/dying, health care, illness, public health, research | Leave a comment

Marking milestones: Patients invited to ring bell in celebration

(PHOTO BY KATHLEEN PAICE FROIO)

(PHOTO BY KATHLEEN PAICE FROIO)

When a bell rings in the Upstate Cancer Center, everyone within earshot cheers. The sound of a ringing bell means that a patient has finished treatment or reached a milestone.

“Staff members gather around to watch the patient ringing the bell, but the sound travels through the halls, and everyone who hears it knows what it means,” explains Colette Zerrillo, associate director of radiation oncology.

Summer Butkins, 30, of Lafayette remembers April 11 as one of the best experiences of her life. She was the first patient to ring the bell, marking her final radiation treatment for breast cancer. The hallway was filled with doctors, nurses and technicians who cared for her since her diagnosis in June 2015, making the experience “absolutely amazing.”

Tracy Allen, 50, of Binghamton (pictured) has similarly fond memories of ringing the bell when she finished her radiation treatments. “The people that are here are incredible people,” she says of the caregivers who exchanged hugs with her that day.

The center has three bells, one on each treatment floor. They were donated by Morganne Atutis of Oswego. She got the idea from a cancer center in Texas where her fiancé was treated. Though he passed away from his illness, Atutis remembers the bells as harbingers of hope and wanted to share that feeling with patients in Central New York.

cancercaresummerThis article appears in the summer 2016 issue of Cancer Care magazine.

Posted in cancer, community, health care, illness | Leave a comment

Sun smart: Teaching kids to protect themselves from skin cancer

BY JIM McKEEVER

Protecting your skin from the sun starting at an early age is an important way to guard against skin cancer. That’s the message a group of medical students shares with elementary school students each spring.

sun“Our goal is to make the kids understand that what they do now will affect them in the future,” says Nathalie Morales, a first-year medical student and president of Upstate’s Dermatology Interest Group. Members share “sun smart” messages through the Sun Smart Syracuse project.

The project began with the Salt City Road Warriors, a group of local runners that wanted to help raise awareness about the dangers of skin cancer, which is on the rise in younger populations. Warrior Maureen Clark contacted Upstate dermatologist Ramsay Farah, MD, who got the dermatology students involved.

In age-appropriate presentations, the students cover the ABCs of sun protection and point out the dangerous societal pressures that encourage tanning, either in the sun or in tanning beds. Then they hand out sunscreen donated by Wegmans and Australian Gold, UV detection bracelets and sunscreen application-tracking calendars.

The dermatology group is interested in scheduling presentations to school and youth groups for spring 2017. Contact vice president Amanda Gemmiti at gemmitia@upstate.edu.

How your group can donate

The running group Salt City Road Warriors raises money for the Upstate Foundation, which manages a variety of funds that support Upstate’s mission. To learn how to set up a fund, contact the foundation at 315-464-4416.

Layout 1This article appears in the summer 2016 issue of Cancer Care magazine.

Posted in cancer, community, dermatology/skin care, education, health care, medical student, prevention/preventive medicine, public health, Upstate Golisano Children's Hospital/pediatrics, volunteers | Leave a comment

Sugar and soy: dispelling the 2 biggest food myths about cancer

Don’t blame sugar

Maria Erdman

Maria Erdman

Glucose feeds all cells in the body, and cancer cells use more blood sugar than do less active cells. But that doesn’t mean eating sugar (or not eating sugar) influences how rapidly cancer spreads, says Upstate registered dietitian nutritionist Maria Erdman.

Sugar’s impact on the body and how it is processed is complicated. Erdman generally cautions people against eating too much added sugar because of the risk of obesity or diabetes, regardless of whether they have cancer.

She also favors natural sugars, such as those found in fruits, over foods that have added sugars. That’s because foods with added sugars typically lack nutrients. Even so, Erdman points out, a person who eats a healthy, plant-based diet can still afford the occasional sweet indulgence.

Don’t ban soy

Erdman says most recent research shows that soy foods, eaten in moderation, can be part of a healthy diet.

The worry that soy foods might cause or worsen breast cancer arose because soybeans contain phytoestrogens, plant estrogens similar in some ways to human estrogens. High levels of human estrogen have been linked to an increased risk of breast cancer.

Recent research shows eating two or three servings of soy foods, such as tofu, edamame or soy milk, per day is fine and may be protective, even for patients with hormone-receptor-positive breast cancers, Erdman says, adding that research is not conclusive about the use of soy extracts or soy protein supplements.

Layout 1This article appears in the summer 2016 issue of Cancer Care magazine.

Posted in cancer, diet/nutrition, health care, public health, women's health/gynecology | Leave a comment

Window to an ill youngster’s world: Therapy with miniatures and sand goes beyond child’s play

Knai Bridges, 13, creates a sandplay assemblage as Ruth McKay, medical family therapist looks on. (PHOTOS BY SUSAN KAHN)

Knai Bridges, 13, creates a sandplay assemblage as Ruth McKay, medical family therapist looks on. (PHOTOS BY SUSAN KAHN)

BY JIM HOWE

A box of sand and an assortment of  miniatures helps young patients portray their world, and perhaps make sense of it, at the Waters Center for Children’s Cancer and Blood Disorders and the Pediatric Hematology-Oncology unit at the Upstate Golisano Children’s Hospital.

Sandplay therapy, as it is called, allows the children to process their feelings and thoughts about their diagnoses and treatment for life-threatening illnesses and the impact of treatment on their daily lives.

“The box of sand offers a safe place to express some of the intense experiences that can come with treatment for life-threatening illnesses,” says medical family therapist Ruth McKay. “Children engaged in sandplay therapy may not consciously understand or be able to speak about what they are going through, but they can explore their experience nonverbally with the miniatures in the sand.”

The box, or sandtray, measures about 28½ inches by 18½ inches, often with a blue interior to represent water or the sky. The patient selects from hundreds of miniature people, animals, toys, cars, household items — almost anything you might find in the real world, including the world of medical treatment, including hospital beds and IV poles.

McKay, who is certified as a sandplay practitioner by the Sandplay Therapists of America, adds that sandplay tends to be a part of therapy, not the only therapy a child does. A patient and his or her family may also be engaged in family therapy, or a child may be learning skills to reduce post-traumatic stress symptoms.

Among what she has seen in sandtrays, McKay cites:

— a child adjusting to having his port accessed and blood drawn by his nurses places witches watching over sleeping children in the sand.  Later he decides that he likes the nurses, because even though they do scary things, they are trying to help him get better.

— another patient leaves just a handprint in the sand like a signature, saying “I am here.”.

— a boy creates a “car family,” consisting of a mommy car, a daddy car, a child car — and a car being transported inside an ambulance, much like his experience of his first treatment.

— a dying boy whose family was reluctant to talk openly about his impending death repeatedly hides a coffin containing a skeleton in different spots in McKay’s office, indicating that death was present, but not out in the open.

— a girl who usually made animals run around endlessly one day places them by the water for a “spa day,” at about the same time her family was no longer feeling in crisis mode, but getting use to the new normal of treatment.

McKay makes sandplay therapy available in her office, or she wheels a well-stocked cart to patients who can’t come to her.

Knai Bridges, 13, of Syracuse, is being treated for sickle cell disease at the Waters Center and enjoys her time with sandplay. “It’s like a box of sand where you can put your toys and special friends,” she says, adding, “it’s like doing a video.”

Among the miniatures she has used are a bride and groom, various animals, hearts, a shell, a dancer and a hospital bed with an IV pole. McKay notes that Knai uses sandplay to help her to hold on to the whole of her life, not just the times when she is receiving treatment. The eighth-grader used to be in the hospital frequently and appreciates sandplay.

“She loves it. She talks about it all the time,” Knai’s mother, Nailah Beyah, says of the sandplay.

Most of the children McKay sees will have one or maybe two sandplay sessions, sometimes  spaced several months apart while some may engage in sandplay therapy for months. She follows a strict hospital protocol for cleaning the figures and changing the sand.

Bridges Knai_McKay Ruth_231

Sandtrays, the boxes that hold sand and miniature figures and other objects, can be arranged any way a person likes. This sandtray scene was one created by Knai.

What is sandplay?

Sandplay is a therapy in which a person, usually a child, expresses thoughts or feelings by creating a scene with miniature objects in a box of sand (called a sandtray), which often has a blue interior to represent water or the sky. The therapist quietly witnesses the creative process and photographs the finished scene to observe themes developing over time. Developed by Dora Kalff a follower of Swiss psychiatrist Carl Jung, sandplay therapy can work for people of any age.

How is it possible?

If you contribute to Paige’s Butterfly Run or related events such as Pedaling for Paige or the Pajamarama, your donation helps make sandplay possible at Upstate. Sandplay therapy is offered to pediatric hematology-oncology patients free of charge, thanks to a grant from Paige’s Butterfly Run.

cancercaresummerThis article appears in the summer 2016 issue of Cancer Care magazine.

 

Posted in adolescents, cancer, community, health care, mental health/emotional health, patient story, psychology/psychiatry, Upstate Golisano Children's Hospital/pediatrics | Leave a comment

Have you seen the summer issue of Cancer Care magazine?

cancercaresummerWelcome to Cancer Care magazine’s summer 2016 issue.

Medical student Ogochukwu Ezeoke, smiling from our cover, aspires to a career in cancer research, and like many scientists she’s intrigued with the idea of using a patient’s immune system to fight disease. In this issue, read about the research she’s doing on racial and ethnic disparities in clinical trials, and the research William Kerr, PhD, is doing to make the immune system better at killing cancer. (Kerr is collaborating with scientists in France on a Fulbright Scholarship.)

Other Upstate scientists featured in Cancer Care include Andrzej Krol, PhD, a professor of radiology who is working to create a better noninvasive diagnostic tool for early liver cancer detection, and radiologist Ernest Scalzetti, MD, who contributes to the effort to quantify information from medical images that can guide medical care.

This issue also features stories from a variety of patients, including one of Upstate’s oldest living pediatric brain tumor survivors, a man with follicular lymphoma, and an 11-year-old girl with Ewing sarcoma. Read about the special bell patients may ring when they finish treatment or reach a milestone.

Upstate experts also share information about the best way for breast cancer survivors to protect their bone health, whether kidney biopsies are always necessary and an important new risk factor for prostate cancer. They also address whether aspirin can protect against colorectal cancer, and they dispel dietary myths about sugar and soy.

If you have story suggestions for future issue of Cancer Care, contact editor Amber Smith at smithamb@upstate.edu Thanks for reading.

Posted in bioethics & humanities, bones/joints/orthopedics, brain/spine/neurosurgery, cancer, dermatology/skin care, genetics, health care, history, kidney/renal/nephrology, research, surgery, urology, women's health/gynecology | Leave a comment

Breast cancer gene also increases risk of prostate cancer

BY AMBER SMITH

Although prostate cancer is the most common cancer diagnosed in men in the United States, the disease kills fewer than 3 percent of those diagnosed. It typically grows slowly, becoming deadly after it metastasizes, or spreads beyond the prostate.

Layout 1If doctors could determine ahead of time which men harbor the most aggressive cancers, they could provide more focused interventions – and potentially save lives.

One clue is whether a man carries the BRCA mutation, better known as the breast cancer gene, which increases a woman’s risk of breast and ovarian cancers. Men who have that BRCA mutation are four times as likely to develop a prostate cancer that is aggressive and lethal, according to urology experts from Upstate.

Assistant professor Srinivas Vourganti, MD, presented research in May at the annual meeting of the American Urological Association showing that men with the BRCA mutation were much more likely to be diagnosed with a prostate cancer that had already spread or was considered more advanced.

Stephanie Gleicher, MD, was a medical student when she pitched a project to Vourganti that involved analyzing a dozen prostate cancer studies that included 261 men with the breast cancer gene. In 17 percent of those men with newly diagnosed prostate cancer, the disease was metastasized. That compares with 4 percent of newly diagnosed men in the general population.

In addition, about 40 percent of the men with the BRCA gene were diagnosed with late-stage prostate cancer, compared with 11 percent of the general population.

“They are very much at high risk of cancer, and we should be tailoring their screening to be more aggressive,” Vourganti says.

Gleicher is now a urology resident at Upstate. She, Vourganti and colleagues published a paper on the subject in the journal The Prostate.

The BRCA genes produce proteins that repair damaged DNA, which could otherwise cause cancer. Previously, mutations of this gene were thought to be involved in as few as 5 percent of prostate cancers. The Upstate research, along with two other studies presented at the conference in May, calls that into question.

One study showed that black prostate cancer patients were more than three times as likely as white patients to have a BRCA mutation – which may help explain why prostate cancer is more aggressive and more deadly in black men.

The other study focused on men who survived breast cancer, showing that they are at a 30 percent increased risk for developing prostate cancer.

Brian Helfand, MD, a urologic oncologist at NorthShore University HealthCare System in Chicago, says men with a personal or family history of breast cancer should be screened for the BRCA mutation.

“We need to recognize this as a risk factor and start screening those men more aggressively,” he told a HealthDay reporter. “BRCA is a tool we can start using to distinguish who is going to benefit from earlier treatment and more aggressive type treatments.”

BRCA mutations

Harmful mutations in the BRCA1 and BRCA2 genes increase the risk of several cancers, including breast, ovarian, fallopian tube, peritoneal, prostate and pancreatic cancer, according to the National Cancer Institute.

HLOA-4C-VERT-REVcancercaresummerThis article appears in the summer 2016 issue of Cancer Care magazine. Hear a radio interview/podcast with Vourganti on the BRCA mutation and its relationship to prostate cancer.

Posted in cancer, genetics, health care, HealthLink on Air, illness, men's health, prevention/preventive medicine, public health, research, urology, women's health/gynecology | Leave a comment