September is Childhood Cancer Awareness Month, but not a day goes by that CHOC doesn’t recognize the bravery, tenacity and valor shown by young oncology patients.
It turns out that CHOC oncology patients – and staff, too – are also talented dancers and lip-syncers. As proof, check out this video, in which patients and staff at the Hyundai Cancer Institute at CHOC groove to Lady Antebellum’s “Compass” and show how they let their hearts be their compasses.
This moving song and video will surely provide an apt theme song for fighting against childhood cancer this month and every month.
When treating children and teens with cancer at CHOC, physicians also have another health aspect in mind: patients’ future fertility.
Because so many adolescent cancer patients are surviving into adulthood, physicians, patients and their families have a major interest in preserving a patient’s fertility, as well as the long-term effects that treatment can have on a patient’s fertility in the future, says Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC.
“If we accept at CHOC that 80 percent of children and young adults are going to be cured or survive long-term, working on survivorship starts from day one,” he says. “This means we address the types of drugs we use, the therapies we use, and their long-term consequences.”
According to the National Cancer Institute, the most frequent cause of impaired fertility in male cancer survivors is chemotherapy or radiation-induced damage to sperm. For girls and young women, cancer treatment may damage immature eggs, affect the body’s hormonal balance, or harm the reproductive organs.
“We need to ask, ‘What are we doing to preserve fertility?’” Dr. Sender says.
Options for preserving fertility depend on many factors, including the patient’s gender, age, type of cancer and type of treatment. Among the ways to preserve fertility are freezing and banking sperm for the males, and freezing and banking eggs for females.
“We also do ovarian cryopreservation,” Dr. Sender says. “CHOC is one of the few institutions offering this option. These procedures may have to be done before or during cancer treatment, and patients who have just received their diagnosis might only have a small window of time to decide what to do.”
CHOC is a member of the National Physicians Cooperative (NPC) of the Oncofertility Consortium, which supports cancer patients and survivors whose medical treatments may risk infertility, and offers tips for adolescent patients to consider on the topics of preserving fertility and parenting.
With input from their parents and other loved ones, young cancer patients facing this issue can ask themselves:
Do I want to have children? If so, how many?
Would I prefer adoption to other parenthood options?
Does it matter to me if my children are biologically related to me?
Am I open to using donor sperm or donor embryos?
Do I have ethical or religious concerns about assisted reproductive technologies?
Questions adolescent and young adult cancer patients can ask their doctor may include:
Will my treatment affect my fertility?
Are there alternative ways to treat my cancer without compromising my fertility?
What are my fertility preservation options?
How much time do I have to preserve my fertility before I need to start treatment?
How will I know if I am fertile following treatment? Are there tests I can take?
What are the risks to my children based on my cancer and the treatment I received?
For girls and young women: Is pregnancy safe for me after treatment?
More articles about adolescents and young adults with cancer:
I’m more than half way through my 50-week CHOC gratitude tour, and I just met two others who want to join me in thanking the hospital for our bright futures: Meet Amy and Emily.
Sisters Amy and Emily believe they have two birthdays: the days they were born, and the days they were diagnosed with cancer before beginning treatment at CHOC.
Each day is met with equal celebration. Amy and Emily, ages 29 and 18, see the anniversary or their diagnosis – their cancerversary – as the day they began the long road toward health.
“We think that’s the day of them starting to get better,” says their mother, Denise Justiniano. “We made that day a good memory. We eat dinner together as a family and make a fun time out of it.”
Both women received treatment as children at the Hyundai Cancer Institute at CHOC. Amy spent six months in the hospital after being diagnosed with lymphoma in 2001. Diagnosed with leukemia in 2008, Emily still receives treatment at CHOC’s outpatient infusion clinic.
And today both women are moving forward: Emily graduated from high school last June and is now in her second semester at college. About seven months ago, Amy gave birth to her second daughter.
“The nurses and doctors at CHOC are amazing,” Amy says. “Not only do they offer the best medical care, but they are empathetic and caring, and offer emotional support in a way that you would expect only a friend to. If it weren’t for CHOC, I wouldn’t be here today. They made a huge difference in my life and helped me become the person that I am today.”
Watching two children battle cancer was heart-wrenching, but Denise credits CHOC staff and fellow families and patients with helping to ease the experience.
“When we first arrived at CHOC with Amy, everyone came out of their room as we were coming down the hall,” she says. “They’re were talking to us, patting us on the back. It was like a warm hug.”
And their time at CHOC made an impression on more than Amy’s and Emily’s health: Amy is a nurse at a local hospital, and Emily is pursuing a career as a nurse practitioner.
“For us, it was the nurses who made CHOC home for us and made it manageable and joked with us,” Denise says.
And CHOC’s impression has extended further into the Justiniano family: Inspired by the CHOC child life staff who helped her sisters cope with hospitalization, a third daughter, Sarah, volunteers at CHOC and is pursuing a career in the child life department.
In honor of National Nurses Week, and the remarkable dedication and care that CHOC nurses provide to our patients and families every day, we’d like to share this narrative by one of our nurses, Kerry Jauregui, from the Hyundai Cancer Institute at CHOC.
Walking onto this unit, is like walking into another world. If you don’t live it, you don’t get it …
• Their hairless, shiny heads are an endearing sight.
• They decorate the face masks they must wear when stepping foot outside their room, with felt mustaches.
• They know how to maneuver their lines – arm up, lying on this side – to get the best lab draw.
• Their NG tubes are referred to as “nose noodles”… and they request that we start making them in pink!
• Their fears and worries are the dreaded painful chemotherapy IM injection they are about to receive, rather than which prom dress to wear.
• Their mile long ‘beads of courage’ hanging from their IV pole resembles so much more than courage… holidays missed at home, trips to the PICU, proms missed, hundreds of chemo and blood infusions, many bad days hurled over the toilet or bucket puking… it is only a mere symbol of their strength during this difficult battle.
• They get gifts and posters, and are sung ‘Happy Transplant Day’ by nurses and child life… while in the outside world, their friends gather and celebrate a birthday party.
• A teenager is not worried about her outfit, hairdo or makeup like her peers, but is more self-conscious of her puffy steroid-induced cheeks.
• They get pulled in wagons down the hallways of the hospital, rather than down the sidewalks to the park.
• They walk holding their IV pole alongside them, rather than the hand of a best friend.
• They wait in anticipation of the morning print out of lab results, comparing and keeping immaculate record of trends and changes… rather than studying algebra.
• They know the names of their chemos rather than their classmates, and will tell you which antiemetic will work best for which chemo.
• Their pain and tears from the injection you gave is disheartening… but seeing them laugh and smile just moments later, realizing the chemo you just gave is saving their life… is truly rewarding.
• Witnessing the newborn who has been on the unit for months, have all of its firsts within the walls of the tiny hospital room… from speaking its first babbles, to teeth beginning to come in… is exhilarating!
• Helping a mother of a child to let go is a heart-breaking, yet sacred, moment.
• The child who was nearing death’s bed in the PICU just weeks ago takes their first step… and from the priceless faces on patient and mom, you know that step means so much more than just a physical act!
I smile in admiration of their strength. I laugh at their playfulness and innocence. I stand amazed by their resilience. I stand speechless in awe of the amount of love and patience the families give. I applaud a mother, who despite her fear and self-doubt, does a perfect CVAD dressing change. I cry worrying about the loss of a child’s innocence and consequently their outlook on life, from such an earth-shattering experience. I hope on behalf of their fight.
I continue to love on these kids and families… and help them to fight their fight alongside of them, because I believe. I believe in a cure. I believe in our science. I believe in our technology. I believe in our mission. I believe in our amazing team. I believe in their resilience. I believe in their strength. I believe in their hope.
Fighting this fight can be tireless, sad, hopeless, draining and frustrating along the way. But saving the life of one of these children, and being there supporting these families every step of the way is the greatest gift and privilege I could possibly ask for! It is my duty to serve. And my honor to join the fight against childhood cancer!
In 2008, Tina took on her current position as the clinical research nurse coordinator for the Neuro-oncology Treatment Program. Tina works directly with the Children’s Oncology Group (COG) to find open protocols for new patients. Once an appropriate treatment is found for the patient based on his or her cancer, stage and other eligibility requirements, Tina maintains the patient’s treatment plan and schedules.
“When I was a bedside nurse, I was very task oriented. I did not always understand why one patient was treated according to a certain protocol and another patient with the same diagnosis was treated on another,” Tina said. “Being part of this research team, I now know why. I am now part of the ‘big picture’ of care and get to be part of the process of deciding which treatment is best for a patient.”
While Tina’s job has taken her away from working in the clinic or at the bedside every day, she still gets to work one-on-one with patients when collecting data or blood samples for COG studies.
“I love my job because I still get to work directly with patients but also have the opportunities to work hard behind the scenes and be part of treatment outcomes,” Tina said. “The children we treat have these starry innocent little eyes that just melt my heart. They deserve a team of people to work hard for them to help manage their disease. I am very proud to be part of the Neuro-oncology Treatment Program.”