Lessons Learned During a Senior Year Spent Fighting Cancer

aya

By Claire Nakaki, CHOC Children’s patient

Hello there! My name is Claire Nakaki. I am a freshman in college, but a little over a year ago, I was a soon-to-be high school senior when I was diagnosed with osteosarcoma, a type of bone cancer. I was a healthy, active volleyball player and I could not understand why this had happened to me. The initial shock was debilitating; cancer had never been something I saw in my future and certainly not my present. I began chemotherapy the month before school started, knowing that I was going to be completing my senior year of high school from a hospital bed. However, after my head and heart had cleared from the turmoil that my diagnosis had brought upon me, I realized that the upcoming year was really just a year. While cancer was something that I knew was going to affect me for the rest of my life, I refused to let it control my life. My surgeon Dr. Nassif asked me before my big surgery (which removed the tumor and replaced the bone with a prosthesis) to set some goals for the upcoming year. Two prominent goals immediately came to mind: I wanted to walk at graduation with my class, on time, without a walker, a wheelchair, or crutches, and I wanted to attend a four-year university after that. These goals did not seem far off, but I unknowingly delved into the hardest year of my life.

I found myself wanting to meet other patients my age almost immediately, begging the Child Life staff to introduce me to any other teens on the floor. I found so much comfort in knowing that there were other teenagers like me experiencing something similar. While no one’s story is identical, discussing the things we do have in common definitely helps soothe an anxious mind. I attended an AYA (Adolescent and Young Adult) support group meeting in my first few months of treatment and then the next following few months, then as often as I could. I had no idea it was even a support group until almost six months in. It felt more like a group of friends who coincidentally have this one big thing in common rather than a solemn meeting to talk about our hardships. Sure, we occasionally brought up things we were going through when someone needed support, but other than that it was just a safe space to be accepted with open arms. This AYA group has become like a second family to me, a fun group of people in all different stages of treatment and survivorship with whom I feel comfortable discussing anything and everything with. I do not know where I would be in my survivorship without this group of people, as well as the entire Child Life staff and AYA facilitators.

I am often asked if the experience was difficult and if I am sad that I missed my senior year of high school. I always have the same answer. Yes, of course it was difficult. I had no idea how difficult it would be. And I am painfully aware that my treatment went much smoother than most. I stayed on the same treatment plan and had very few bumps along the road. I am sure that my classmates enjoyed their senior year at school, but I would not trade this past year for any other situation. I truly mean that. I have learned so much from the genuinely kind and empathetic people that I met at CHOC, both patients and staff members. I reiterate time and time again that I feel so lucky to have had 17 years of life before cancer entered my life and I know that I have many more to come. I met so many younger kids during my stay at CHOC, mainly just a “hello” in the hallway, but there were a small few that I really got to know personally. These kids hold such a special place in my heart. I served as somewhat of a mentor to a few, due to my age and stage in my treatment, what kinds of procedures I had undergone, and what kinds of machines I was attached to. The kids I got to know made such a huge impact on my general attitude towards life and I truly hope that I made a positive impact on them. One piece of advice that I want everyone who goes through cancer to grasp is that no matter how bad you feel or how hard it is to meet your daily goals, your journey is always just one day at a time. It is so important to remind yourself that every day is just 24 hours. All you have to do is just get through the day. Take every step of the way just one day at a time. Soon enough, you will begin to see the light at the end of the tunnel.

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As I mentioned in the beginning of the post, I am now a first-year college student, which means that yes, I did meet my goals. I finished the last step of my treatment and was released from the hospital on June 9th and walked at my graduation without a wheelchair, a walker, or crutches one week later. I was accepted to college in the middle of my treatment, and completed all of my required courses in order to attend in the fall. I achieved these goals with a year of incredibly difficult work and with the unconditional support from my family, friends, and CHOC staff. There will always be things I cannot do because of what happened to me and I still go to physical therapy twice a week and have to take extra precautions in almost everything I do, but I am so happy to be back in the real world, living my new normal.

 Learn more about the Hyundai Cancer Institute at CHOC Children’s.

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Oncology Patient Returns to CHOC as Oncology Nurse

In honor of Childhood Cancer Awareness Month, we share a poem written by Kim, a registered nurse in the hematology/oncology unit at CHOC Children’s, at the time she finished her training. Kim is a cancer survivor and former CHOC patient.

Serendipity

I had no idea what this was going to bring up

All these memories and feelings I have folded so neatly in a cup

Tucked away never again to be touched

Walking back into CHOC, oh how I have forgotten so much

You see, I once had cancer too

I came back as a nurse to see what I could do

I once told my own nurses, now peers, I will be back. Something I am sure they heard before

10 years later I walk through CHOC’s door

As a registered nurse I am proud to be

But I never underestimate the patient that is still inside of me

People have told me it takes certain strength to face it again

“Doesn’t it remind you of all your pain?”

My pain?, I think, I am one of the lucky ones.

I get to come to work and I have fun

I am allowed to make funny faces

I make kids laugh and participate in car chases

I am able to share in life’s precious moments daily

Except for the need of possibly doing a Foley

Even when I am running around like a chicken with no head

I will always take time for that scared kiddo sitting in the bed

There are times when I step back and remember

When that was once me waiting for a cure

This hasn’t been easy, seeing the chemo’s and procedures

And sitting through those late effects lectures

Sometimes when the day has been hard I ask myself, “Why did I pick THIS? What else could I have been?”

But I quickly remind myself I didn’t pick this- it picked me way back when.

I am surrounded by hope, a side people do not see

For I am a proud survivor and now registered nurse of pediatric oncology.

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CHOC Opens Wing for Adolescent, Young Adult Cancer Patients

Where would you want to heal?

Nick Meza immediately knew his answer. As a lifelong Californian and committed Eagle Scout, his life was dotted with dips in the pool, canoe adventures along the river, and seaside snorkeling expeditions before being diagnosed with cancer two years ago.

“It is when I am in the water that I find the serenity and courage to stay positive and focus on what is right with the world,” says Nick, 20. “When I am in, around or close to a body of water, I forget about troubles and my life’s struggles and suddenly water becomes my life, my strength and my healing place.”

Now, Nick – and his fellow adolescent and young adult (AYA) patients at the Hyundai Cancer Institute at CHOC Children’s – will get his wish, at least virtually.

infusionarium

A young cinematographer was paired with Nick to create an immersive film capturing life under the sea; other videos explored healing scenarios suggested by other patients. These films will offer Nick and his fellow patients a brief escape from their daily battles while broadcasted on large, vertically oriented television screens inside the lounge of CHOC’s newly opened AYA wing.

The lounge and multimedia system offers patients an experience similar to what’s provided by CHOC’s Infusionarium, which opened in 2014 inside the outpatient infusion center and provides an immersive, healing environment for patients.

It also provides AYA patients with a dedicated place to play video games, watch television and movies, or just hang out with their peers – a luxury Nick longed for when he was newly diagnosed with leukemia and found himself among the oldest CHOC patients.

“It’s nice to walk outside of your room and find a place to hang out,” he says. “You can take your brother and friends there and play video games. It’s a space for the teenagers – not the little kids.”

The AYA wing also includes four specially outfitted patient rooms. Dedicated to this unique patient population, room amenities include vibrant paint colors, customizable wall art, and portable, larger television sets. These mobile units share the library of patient-directed videos, as well as educational “cancer survival” videos and eBooks that feature CHOC experts.

The lounge was developed by Reimagine Well, a company that uses emerging technologies and digital media to create immersive healing environments.

AYA lounge

The AYA wing dovetails with the Cancer Institute’s recognition that teens and young adult patients with cancer have unique needs. In fact, CHOC’s is among the few pediatric cancer programs in the country with dedicated services for this patient population.

“When it comes to treating an adolescent or young adult with cancer, their medical needs are unique – but so are their psychosocial needs,” says Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC Children’s. “The AYA wing will give these patients a venue to heal on their own terms and a place to call their own.”

How Parents Can Help Teens Manage Their Health Care

When it comes to health care matters, parents of teenagers must strike a delicate balance, especially when the teen is old or mature enough to make his own decisions.

Parents can help teens learn about their illness and decide what’s best for themselves – without overpowering their children, says Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC Children’s and chairman of SeventyK.org, an adolescent cancer advocacy organization.

“The parent’s role in a teen’s health care should not to be to take over the child, but to encourage the young person to take ownership of this new reality,” Dr. Sender says.

Begin with honest conversations about the teen’s plans to manage his health, he recommends.

“Let the child come up with a solution to their problem,” Dr. Sender says. “It’s about respecting the teen’s emerging autonomy. You don’t want to have a hovering parent make every decision for the child.”

When confronted by a disagreement with a teen over a health care decision, parents should be patient, Dr. Sender advises.

“You have to go back and re-educate them,” he says. “Calm down. Don’t say things you are going to regret. If they disagree, it doesn’t mean they are wrong. Explain things to them again.”

Dr. Sender offered some tips for parents of teens with a serious or chronic medical condition:

  • Actively include the teen in meetings with doctors and health care providers managing his or her care. Make sure everyone addresses the teen directly and doesn’t treat him like a third party.
  • Don’t keep secrets or hide information from your teen, and never lie about their situation.
  • Help the teen act in his best interest and let him know he may fail.
  • Help your teen maintain peer relationships, including through social media.
  • Be prepared to have helpful discussions about sexuality if necessary.

For teens who are hospitalized, CHOC works to create a positive environment for patients and their families. These amenities include a teen room, family lounge, family consultation rooms, a meditation center and the Family Resource Center, which is stocked with educational resources including Internet access, books and pamphlets.

To learn more about the role of teens in their health care, go to choc.org/health.

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Treating the Teen Cancer Patient

crop_girlPHYSICAL CHANGES
The teen years are a time when adolescents develop their self-image, seek autonomy or independence from their parents, and deal with issues of emerging sexuality, Dr. Sender says. Keeping that in mind with young cancer patients, he explains, “We try to understand and not downplay the issues of self-esteem and body image. We make sure we are talking to the patients and not just their parents. No one likes to lose his or her hair, for instance. For a young girl who is 13, 14 or 15, we realize this can be quite catastrophic.”

EMOTIONAL AND SPIRITUAL CONCERNS
“A teen’s peers are really important too, so we try to keep them involved. Peer support helps,” says Dr. Sender.  “We have social workers and nurses that talk to the patients. We try to make sure we are listening to them. We’ve taken them out of their normal routine, their school and peer relationships, and they lose control.” Patients may also enlist support from a religious leader of their chosen faith if they would like. “We respect all religions and people’s faith and how they cope,” Dr. Sender says.

TEEN CANCER PATIENTS ARE UNIQUE
Social and peer acceptance; career and education considerations; and the desire for independence are among issues to be considered when helping the adolescent cancer patient. It’s important for everyone involved in the patient’s care to consider these factors to better understand how the teen will respond to therapy, the hospital and possibly being in a clinical trial, says Dr. Sender, who noted that fewer teens and young adults nationwide participate in pediatric clinical trials compared to younger children. To help better connect teen cancer patients with their school and peers, CHOC is participating in a research project with UC Irvine that will place a robot in an Orange County
classroom — connected to a CHOC patient by a computer — so the patient can interact with classmates and have an improved sense of normalcy. Dr. Sender says researchers hope to learn whether the robot keeps the patient better engaged with peers at school.

FAST FACTS

  • Estimated number of cancer deaths that will occur this year in children from birth – 19: 1,960
  • Estimated number of new cancer cases that will be diagnosed this year in the U.S. in children ages birth-19: 15,780
  • Percentage of overall 5-year survival rate for childhood cancers: 80%

View the full feature on Teen Cancer Patients

Dr. Boon
Dr. Leonard Sender
CHOC Oncologist

PHYSICIAN FOCUS: DR. LEONARD SENDER

Dr. Sender is the medical director of the Hyundai Cancer Institute at CHOC Children’s and director of clinical operations and program development at the Chao Family Comprehensive Cancer Center at UC Irvine Medical Center. Dr. Sender completed his internship and residency in pediatrics at UC Irvine Medical Center and had a fellowship in pediatric hematology/oncology at Children’s Hospital Los Angeles. Dr. Sender serves as board chairman of the “Stupid Cancer” Foundation and is a founding member and chairman of SeventyK.org, an adolescent cancer advocacy organization.

DR. SENDER’S PHILOSOPHY OF CARE:
“I take a patient-centric approach and treat young patients as a person while understanding the context in which they get cancer. My goals are to cure the cancer and achieve a meaningful survivorship.”

EDUCATION:
Medical school at the University of the Witwatersrand in Johannesburg, South Africa

BOARD CERTIFICATIONS:
Pediatric hematology/oncology Pediatrics

More about Dr. Sender

This article was featured in the Orange County Register on June 9, 2014, and was written by Amy Bentley.

Preserving Fertility in Adolescent Cancer Patients

When treating children and teenPreserving_Fertilitys 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 Children’s.

“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 Preserving_Fertility_2have 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:

Helping Adolescents and Young Adults Cope with Cancer

girlwithcancerThere’s never a good time for a cancer diagnosis, but the teen and young adult years can be an especially tough time for cancer patients. Adolescents and young adults into their 30s who are being treated for cancer face a wide range of issues special to their age group that need to be considered to help them cope. These issues include fertility preservation, the development of body image, career and education considerations, and dealing with an increased dependence on parents at a time when many in this age group strive to be more independent.

“Teens are starting to enter adulthood and move away from parents. They are starting to become more of an individual. In the normal struggle between the teenager and their parents, you throw cancer into the mix and you create tremendous stress. This is a time when they want to be independent but they are sick,” explains Dr. Leonard Sender, director of the Hyundai Cancer Institute at CHOC Children’s and specializes in the unique issues relating to cancer treatment in adolescents and young adults from the ages of 15 to 39.

For several years, Dr. Sender has served as an advocate for this very special group of patients through the SeventyK that he co-founded in 2008 and currently chairs. Dr. Sender is especially sensitive to the psychosocial impacts of a cancer diagnosis on those just beginning to enter their most productive years. He remains a vocal advocate for this group, working to make sure they receive age-appropriate medical treatment and support, including, psychosocial, community and palliative services. In 2010, Dr. Sender founded two entities critical to the development of the emerging adolescent and young adult oncology subspecialty as president of the Society for Adolescent and Young Adult Oncology (SAYAO) and editor-in-chief of the Journal of Adolescent and Young Adult Oncology (JAYAO).

According to SeventyK, adolescents and young adults with cancer have often been described as a medically underserved population, falling through the gap between pediatric and adult oncology. As they transition from childhood to adulthood, the normal issues people in this age group face are compounded when they are diagnosed with cancer.

These patients may face treatment-related issues such as infertility; the loss of a job or breaks in education due to treatment; increased dependence on parents; and other health concerns, all of which can be exceptionally difficult for this group to cope with. Fertility preservation, in particular, has long been overlooked for adolescents, especially considering the fact that many young men and women haven’t yet started to think about having children. Adolescent and young adult patients may need extra support or psychological help to cope.

“Our goal is to cure these kids,” says Dr. Sender. “We bring in the best science, the best clinical delivery of care that we can. We always take into account the developmental stage of these patients. We never lose sight of the fact that these patients undergo tremendous amounts of interventions that can physically and emotionally scar them. We try to think about them as survivors from day one.”

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CHOC Teen Shares Her Positive Take On Beating Cancer

In honor of National Young Adult Cancer Awareness Week (April 2-8), CHOC Children’s patient, Kenia Gonzalez, shares her story of how she coped with her diagnosis and went on to beat cancer. She wants young cancer patients to know “you are never alone!” 

Kenia, pictured outside of CHOC Hospital, was recently interviewed for the “OMG! Cancer Summit,” a special oncology conference for the young adult cancer movement.

My name is Kenia Gonzalez and I am nineteen years old. I was first diagnosed with ovarian cancer when I was seventeen. I was a senior at Century High School, a straight-A student who was involved in different activities, including captain of the volleyball team, when I found out my life was going to change completely.

I remember having a meeting with my parents and my doctor about what I was diagnosed with and what was going to happen next. At first, I felt overwhelmed by my whole situation since everything was happening so fast. It was a lot to take in because I was told about chemotherapy and its effects, and the limitations that I was going to have.

Getting diagnosed with ovarian cancer was not only tough for me to take in but I felt it was also very hard for my family – especially my parents. My parents are very strong people and I know they tried to be stronger for me. What motivated me to fight and not give up, were my parents because I knew I had to stay strong not only for myself but also for them. I was not going to let this disease defeat me and what helped me keep a positive attitude was the fact that I knew that I had complete support from my family, friends, classmates, and teachers. Most importantly, I knew my family was behind me every step of the way.

I feel completely blessed with all the support I received and I am proud to say I have been cancer free for two years. I am now attending college, working, and enjoying the opportunity I was given. I understand that not everyone who is unfortunately diagnosed with any type of cancer has the same reaction, but I just want to say to anyone who is having difficulties, to never give up and always keep trying, especially if it is something as valuable as their life, and to know that they are never alone.

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State-Of-The-Art Fertility Options Available at CHOC

Oncofertility is a relatively new field that studies how cancer treatments affect fertility. After all, chemotherapy and radiation may be crucial tools for beating cancer. However, they can also damage reproductive organs. One of the biggest problems cancer survivors face is fertility preservation. Some of the most advanced oncofertility services in the world are available right here in our community – at CHOC Childrens’s, as part of its Adolescent and Young Adult (AYA) Cancer Program.

The program has long offered fertility solutions for males. Female patients, however, face a more difficult challenge. “For a long time, we didn’t understand how chemotherapy affected the ovaries,” says Leonard Sender, M.D., medical director of CHOC Children’s Cancer Institute. “Over the last few years, however, the science has advanced considerably.”

One option for older adolescent patients is egg harvesting, similar to that used for standard infertility treatments. However, the procedure takes at least two to three weeks, before chemotherapy can begin. Most teens (who often have aggressive cancers) can’t wait that long.

Fortunately, there’s a new option for female patients who have started their period (typically 12 years old): ovarian cryopreservation. Here, doctors remove and freeze one of the ovaries. In the future, the ovary may be re-implanted and then “jump-started” to begin producing eggs again. It sounds like science fiction, but the procedure has been successful in older women. As part of an ongoing research program with the national Oncofertility Consortium, CHOC now offers this option to AYA patients.

“These young girls may only need to think about fertility 10 years from now, but in that time the technology will improve, and re-implantations will be even more successful,” says Dr. Sender. “What we know is that we have this brief moment before we start chemotherapy to preserve a patient’s fertility. We are very excited to be participating in this cutting-edge research, and I believe it will become a major part of our survivor program.”

To find out more about the oncofertility program at CHOC, please call 714-456-8025.