Stories

CHOC Nurse, Patient Share Love of Music

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Music has been a bright spot for Christine throughout her entire life – and especially while undergoing treatment at the Hyundai Cancer Institute at CHOC Children’s.

And when CHOC nurse Erika Crawford heard Christine playing a familiar song on a piano while receiving chemotherapy treatment one day, she spoke up.

“I told her I knew that song on the ukulele, and that we should play together,” Erika recalls.

Since then, the pair has regularly jammed together while Christine, 17, is in CHOC’s Outpatient Infusion Center. Inspired by Erika, Christine started learning the ukulele and the pair will tinker on songs together.

They even gave their duo a name: E.C. Teal, which incorporates their initials and the color they both happened to wear one day.

Because infusions can take hours, music helps Christine pass the time and take her mind off her condition.

“I’ve always loved music,” she says. “Going through cancer made me realized just how much I loved music.”

Erika began playing the ukulele only a year ago. She was previously learning the guitar and thought its smaller cousin might help her learn faster. And now, it serves as another way for her to connect with patients like Christine.

“It’s fantastic,” she says. “It’s the best part of the job.”

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Clinical Programs & Services

Caring for Patients With Sickle Cell Disease

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In honor of National Sickle Cell Month, we spoke to Dr. Geetha Puthenveetil, a pediatric hematologist and director of blood and donor services at CHOC Children’s, about the multidisciplinary care and other resources available to patients with sickle cell disease at CHOC.

sickle cell disease
Dr. Geetha Puthenveetil

Q: What is sickle cell disease?

A: Sickle cell disease is an inherited disorder wherein the red blood cells are misshapen. Instead of their standard round shape, the red blood cells are shaped like sickles, or crescent moons. This can lead to painful episodes and even hospitalization when these misshapen red blood cells get caught up in small blood vessels when they try to carry oxygen to different parts of the body. Sickle cell disease is usually diagnosed at birth during newborn screening tests.

Q: How do patients with sickle cell benefit from CHOC’s comprehensive red cell clinic?

A: I started this clinic for patients with a number of red cell disorders—including sickle cell disease, thalassemia, aplastic anemia, and Diamond-Blackfan Anemia. The clinic is attended by a cardiologist, endocrinologist, and hematologist and provides comprehensive care for patients.

Our multidisciplinary clinic offers continuity of care and expedited service for patients and families that they don’t find elsewhere. Since their entire care team is in one place, families can get more immediate answers to their questions. All members of the team are involved in creating the care plan for how best to treat each patient.

Q: What should parents know about the hematology program at CHOC?

A: Along with other centers, we are a part of a growing number of clinical trials to decrease pain crises in patients with sickle cell, and their amount and length of hospitalizations. We are also part of international study looking at standards of patient care.

Patients can also benefit from neuropsychology evaluations. Our pediatric neuropsychologist is specially trained in working with patient with sickle cell disease, and can help evaluate if their medic al condition is affecting their cognitive functioning, and lay the groundwork for treatment.

We also offer a support group for families of patients with sickle cell. Families who are new to their diagnosis or our program have the opportunity to be mentored by more experienced families who can relate to what they’re going through. This group is open to all caregivers of our patients, from teachers and principals to babysitters and day care operators, who are interested in learning more about sickle cell, and what they can do to offer better care.

Q:  What aspect of pediatric hematology/oncology are you most passionate about?

A: No two patients are alike. Each and every sickle cell patient has their own challenges and battles, and each requires a unique strategy. As a hematologist/oncologist, you need to constantly think outside the box.

Despite all the health challenges my patients are facing, they always keep me laughing. In pediatrics, you’re not just treating the child, but the whole family. It adds to the challenge of providing care, but it’s essential to engage their entire environment in order to create the best outcomes for them.

Q: What impact do blood donors have on patients with sickle cell?

A: Blood donors are of utmost importance, and they are crucial for patients with sickle cell disease. Sickle cells have a shorter life span than normally-shaped cells, which can lead to anemia, or a low red blood cell count. Our patients depend on the generosity of blood donors.

Patients with sickle cell can develop antibodies after their great number of transfusions, so our team is focusing on red blood cell genotyping, so we will be able to more closely match them to specific and regular blood donors. Our ultimate goal is having patients develop fewer antibodies because they’d be better matched with their donor at a gene level.

  Learn more about donating blood at CHOC.

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Health & Safety

Year-Round Water Safety Reminders

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By Justin Pick, pediatric resident at CHOC Children’s

Living in Southern California affords us some of the best weather in the world, with year-round access to beaches, pools, and hot tubs. However, these privileges come with risk. Drowning is the second leading cause of death in children between the ages of five and 24. Even though summer may technically be over, keep in mind these year-round water safety reminders to ensure your children are safe around water.

Above all, it is most important to learn how to swim by finding a swim class nearest to your home.

Pool Safety

 Remind your teen about the importance of swimming in a pool with an on-duty lifeguard who is adequately trained in CPR.

  • CPR training for all teenagers and caregivers is important in the event of an emergency. Locations for training include: hospitals, The Red Cross, YMCA, YWCA
  • Avoid running around the wet edges of pools to avoid falls with severe head injuries.
  • Drink plenty of fluids because people often do not realize how much they are sweating, even when temperatures have dipped after summer months. On a typical day, kids should drink the number of 8 oz. cups of water equal to their age. For example, a five-year-old should drink five 8-oz. glasses of water every day.
  • Consistently reapply sunscreen since the sand and ocean can act to concentrate the rays of the sun. Everyone should wear sunscreen whenever they’re outdoors, all year long.
  • Always have access to a phone with cell reception to dial 9-1-1 in the event of an emergency.

Open Water Safety

 Never swim alone in the ocean! Even good swimmers need buddies.

  • Know your swimming ability and do not try to swim in deep water (where your feet are unable to touch the ground) if it is not safe for you to do so.
  • Pay attention to warning signs in the area. Only swim in designated swim areas.
  • Stick to beaches with an on-duty life-guard
  • Avoid diving into water in which the depth is unknown or if there are any potential objects (i.e. rocks, debris) that may cause injury.
  • Avoid swimming near fast moving waters, especially rip tides. If trapped in a rip tide, swim parallel to the shore until you have escaped the rip tide and then adjust your course and safely swim to shore.

Boating Safety

  • Be mindful of other drivers who may be under the influence of alcohol or other substances.
  • Always obey local boating laws
  • Review the boating safety manual in the event of a capsizing
  • Always have a cell phone in case of emergencies
  • Be aware of the direction of land; we recommend always having land within vision.
  • Always have access to life preservers on the vessel in the event of an emergency
  • Always let someone know where you intend on going in the event of an emergency, so an efficient search and rescue can be initiated.

Download your copy of CHOC’s guide to drowning prevention.

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Clinical Programs & Services, Stories

Once a CHOC Oncology Patient, Now an Oncology Nurse

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As a typical, happy-go-lucky six-year-old, Shaina was playing outside with her brother before dinner time, when her back started hurting.

She laid down on the couch to rest, but when her mom called her for dinner, she was too weak to even make it to the table. A trip to a local emergency room followed, and kidney stones were suspected. She was eventually transferred to CHOC Children’s. After additional testing, Shaina was diagnosed with neuroblastoma, a cancer that often starts in the tissue of the adrenal glands, on top of the kidneys. What they thought originally might be kidney stones, was actually the pain of her kidneys being crushed by a tumor that was growing inside her.

She underwent emergent surgery two days later to remove the tumor and one of her kidneys, and overcame the odds that were stacked against her.

choc oncology
Shaina at age 6, as a patient at CHOC

“I was so young when I was diagnosed, so I don’t remember a lot of the scary parts of that time, but ever since, my family has been telling me stories about how wonderful my physicians and nurses were to our whole family during that time,” she says.

Those stories are part of the reason that six-year-old Shaina grew up to be a hematology/oncology nurse with the Hyundai Cancer Institute, in same hospital that saved her life almost two decades ago.

After surgery, Shaina was in and out of the hospital for chemotherapy treatments and a stem cell transplant. The first one hundred days after such a transplant are crucial to ensure a patient’s health and safety, and her family had to be abundantly cautious that her environment was as clean and safe as possible. At the end of those hundred days, her family threw a big party at their house to celebrate making it over the hump.

She relapsed a few months later.

Experimental treatment at various hospitals throughout Southern California followed, and three years later, she was cancer free for good.

Even during this time, Shaina knew she would return to CHOC someday.

choc oncology
As a child fighting cancer, Shaina knew should would return to CHOC someday as a nurse.

Fast forward a few years and Shaina was a high school student. Searching for volunteer hours as part of her curriculum, she sought out volunteer opportunities at CHOC as a way to say thank you to the hospital that saved her life as a child.

She joined the Child Life team as a play room volunteer, helping normalize the hospital environment for patients utilizing the same play rooms she had sought an escape in while she was a patient.

She now works alongside some of the same physicians and nurses that cared for her as a child.

One of her primary oncology nurses, Dana Moran, gives her a big hug whenever they pass each other in the hallways.

“Shaina was so little when she was a patient here- she was so fragile and scared, but she was a strong kid with a strong personality, and that helped her get through her challenges,” Dana says. “Now it makes me proud to see her happy and healthy and back at CHOC caring for other kids.”

Her pediatric oncologist, Dr. Lilibeth Torno, keeps a photo from Shaina’s nursing school graduation on the desk in her office.

“I am really proud to have seen her grow and mature as a person and as a colleague in oncology,” Dr. Torno says. “I have seen her strength as she overcame challenges that cancer survivors go through and she did it successfully!”

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Health & Safety

A Pediatrician’s Tips for Sunburn Remedies

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Summer may be coming to a close, but in Southern California, sunburns can be a year-round issue in our sunny climate. Even though trips to the beach and afternoons spent at the pool have given way to soccer practice and school playgrounds, sun safety is as important as ever.

sunburn remedies
Dr. Daniel Mackey, a CHOC Children’s pediatrician

Sunscreen Safety Reminders

  • Everyone should wear sunscreen whenever they’re outdoors, no matter what season we’re in or what the temperature is. Since babies under six months old have skin that is especially susceptible to sun damage, they should be kept out of the sun whenever possible.
  • Apply sunscreen every two hours that has SPF 30 or higher. Reapply more often if you’re swimming or sweating.
  • Wear a wide-brimmed hat and sunglasses for extra protection.
  • Double-check your family’s medications, since some may cause an increased sensitivity to sunlight.

But what happens when you do your best to protect yourself and your family from the sun, but sunburn still happens? We spoke to Dr. Daniel Mackey, a CHOC Children’s pediatrician, for a physician’s tips for sunburn remedies.

  • Use ibuprofen as needed for pain for the first few days after an especially uncomfortable sunburn.
  • A cold compress can help cool the skin. Either a damp cloth with cool water, or taking a cool shower or bath can work for this.
  • To help relieve the sting sunburn can leave behind; apply a 0.5 percent or 1 percent hydrocortisone cream to the damaged skin.
  • Aloe vera gel, or a product containing aloe vera, can help with the skin healing.
  • Drink extra fluids during recovery. On a typical day, kids up to age 8 should drink the number of 8 oz. cups of water equal to their age. For example, a five-year-old should drink five 8-oz. glasses of water every day.
  • Avoid further sun exposure while the skin is healing.

If the pain is getting worse or the skin is becoming more red or tender in the days following a sunburn, it is best to seek medical care, as your child might be experiencing an infection. Find a provider near you.

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Health & Safety

Debunking Myths on Over-the-Counter Medication Safety

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By Giang Lam, clinical pharmacist at CHOC Children’s

Over-the-counter (OTC) medications provide quick access to treatment options for a variety of minor ailments. They enable patients to self-treat many symptoms with relatively low cost, and avoid unnecessary visits to the doctor’s office. Unfortunately, the accessibility and affordability of OTC medications has also led to many misconceptions regarding over-the-counter medication safety.

Many consumers believe that OTC medications are completely safe with no risk of side effects. Since they don’t require a physician visit or a prescription, many people think OTCs are harmless. The truth is many of these OTC medications start out as prescription medications before going over the counter. The way that they work in our body is exactly the same as the prescription version and has the same potential for harmful side effects when not taken properly.

Some consumers believe that it is safe to take larger doses or to take the medication more frequently when the recommended dose doesn’t seem to work, instead of seeking a consultation with their pharmacist or physician. The product is often taken as long as symptoms persist. Active ingredients, warnings, and recommended dosing listed on the product label are often ignored due to the perceived safety of OTC medications. Many OTC medication labels will not provide dosing until your child is a certain age or weight since they are not approved or studied in younger children.

One of the most frequent complications faced when evaluating over-the-counter medication safety is the duplication of ingredients. The same active ingredient can often be found in prescription and OTC formulations. For example, acetaminophen is a common pain reliever and fever reducer that is often combined with other ingredients. It can be found in narcotic pain relievers, cough and cold medications, and sleep aids. Duplicating an ingredient such as this one can result in an accidental overdose with serious and dangerous consequences. Download a copy of A Parent’s Guide to Acetaminophen for Children.

Brand name manufacturers will list all the active ingredients in the product label on the side of the box, but, the ingredients may not always appear on the front label. It is essential to compare product labels when taking multiple OTC and prescription medications to prevent duplicating ingredients. Over-the-counter medication safety is crucial, as they can still have interactions with prescription medications so it is important to discuss with your pharmacist or physician.

Keep these tips in mind to ensure your family is taking medications safely:

  1. Read the product label. Know what you’re taking or giving to your child, how to take it and possible side effects.
  2. Try to avoid products with multiple ingredients or mixing of OTC products if possible.
  3. Discuss risks and benefits of OTC and prescription medications with your pharmacist and physician.
  4. Seek medical attention if symptoms persist or worsen.
  5. Like prescription medications, store OTC medications safely and out of the reach of children.

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Stories

Sibling Caretaker Becomes CHOC Hematology/Oncology Nurse

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She was barely through her first year of high school, but Emily Gruendyke was determined to be a nurse. A pediatric oncology nurse, specifically. The young teen carefully mapped the steps she would take to achieve her career goal. Nothing was going to stand in her way. And, sure enough, today Emily is a hematology/oncology nurse at the Hyundai Cancer Institute at CHOC Children’s.

Emily’s family supported her calling from day one, especially her younger sister Amanda. Better than anyone, Amanda knew Emily would be a great oncology nurse. She experienced Emily’s nurturing care often, especially after being diagnosed with a type of cancer called neuroblastoma. The diagnosis—delivered when Amanda was 9 and Emily was 14—affected the entire family. Emily quickly learned just how isolating the disease could be — not just for the patient, but for parents and siblings.

choc hematology/oncology
Emily and her late sister Amanda, at Disneyland.

“During the first year of Amanda’s treatment, she and my mom spent 200 nights at the hospital, which was about an hour from our home. I would only get to see them on weekends. And, as much as my friends cared, they didn’t really understand what we were all going through,” explains Emily.

When Emily was able to visit Amanda at the hospital, she noted the impact nurses had on her mom and sister.

“My hospital visits really opened my eyes to what nursing could do. I witnessed the difference a good nurse had on my mom and Amanda,” says Emily.

One experience was particularly impactful for Emily.

“The first night my mom and sister were home, following the start of her treatment, a nurse stopped by the house to show my mom how to hook up all of the medical equipment. Though I don’t blame the nurse, she breezed through all of the steps and didn’t really make sure my mom was comfortable with what she had to do. Later in the evening, I remember my mom crying at not being able to recall everything. Another nurse came out and did an amazing job educating my mom. More than that, the nurse empowered my mom as a caregiver. I knew that was the kind of nurse I wanted to be,” shares Emily.

As a CHOC hematology/oncology nurse, Emily is steadfastly dedicated to providing her patients’ families with the knowledge and confidence to take care of their children. She works hard to help her patients and families get through treatment and adjust to their “new normal.”  And, just as she was inspired by her sister’s strength, she admires the inspiring resiliency of her patients. She also takes the time to acknowledge her patients’ siblings.

“A cancer diagnosis is tough on everyone and sometimes siblings can get inadvertently left out. I understand siblings’ point of view. I take time to not only ask if they have questions about cancer and involve them in the care—if that’s what they want—but I also ask them about their own interests,” says Emily, who is proud to be part of a team committed to patient- and family-centered care.

Emily’s sister lost her battle to cancer after a brave 12-year fight. Emily had been CHOC hematology/oncology nurse for four years at that point, of which Amanda was very proud. And despite the difficulties that came with having a sister with cancer, Emily’s family was grateful that she found a calling that would positively impact so many other hurting families. Emily can’t imagine doing anything else.

“Even though my sister passed away from her cancer, which was devastating to our family, I feel so strongly that being a pediatric oncology nurse is what I was made to do. I would not want any other job in the world. And I know Amanda wouldn’t want me doing any other job either,” says Emily.

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Hospital Happenings

Spiritual Care Available to CHOC Children’s Patients, Families

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While CHOC Children’s is committed to providing the highest quality medical care to children, we recognize the importance of supporting the spiritual needs of our patients and their families as well.  The Spiritual Care team at CHOC is made up of chaplains and volunteers of various faith traditions that spiritually and emotionally support our patients and their families.

Norm Jeune, lead chaplain, regularly meets with patients and families to understand any spiritual practices or preferences that are important to them.

CHOC chaplains use different methods of spiritual and emotional support to assist each patient based on the particular family, and what is important to them during their time of need. Some families may find strength in traditional prayers from their religious practices, while others may find that mindfulness techniques, meditation, or simple discussion to release burdens is most helpful. Unique to pediatrics, families sometimes find comfort in ritual practices for their children, such as baby dedications, baptisms, First Communion, or Confirmation.

spiritual care
Norm Jeune, Lead Chaplain

“For a family to know that these milestones can still be shared in a hospital setting is very special to many parents and children,” says Jeune.

Recently, an increased focus on holiday offerings has meant that more patients and families have easy access to religious and cultural celebrations that are important to them while they’re in the hospital. In addition to weekly spiritual gatherings for Catholic, Jewish, Christian, and Muslim faiths, patients can attend organized holiday observances throughout the year.

“In addition to celebrating religious holidays, observing cultural holidays such as cooking demonstrations or book readings, can serve as learning opportunities to patients and families,” says Jeune.

The Meditation & Prayer Room is another spiritual resource for CHOC families. Located on the second floor of the Bill Holmes Tower, it is a quiet and sacred place designed to accommodate people of all faith traditions.

Learn more about the spiritual care program at CHOC, including information on weekly services.

 

Health & Safety, Stories

Meet Dr. Hoang “Wayne” Nguyen

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CHOC Children’s wants its patients and families to get to know its specialists. Today, meet Dr. Hoang “Wayne” Nguyen, a child and adolescent psychiatrist. Dr. Nguyen attended medical school at Texas A&M Health Sciences Center and completed a psychiatry internship at University of California Irvine. He completed his residency training in child and adolescent psychiatry and pediatrics at the University of Utah Health Science Center.  He has been on staff at CHOC for over 16 years and is currently serves as director of psychiatry and the chair of the physician well-being committee.

Dr. Hoang “Wayne” Nguyen
Dr. Hoang “Wayne” Nguyen

Q: What are your special clinical interests?
A: Psychosomatic medicine including eating disorders, psycho-oncology, tic disorders, and Autism spectrum disorder and intellectual disability.

Q: What are some new programs or developments within your specialty?
A: Our most exciting program is the building of an inpatient child and adolescent mental health unit. We are also involved in integrating psychiatric care and mental health in various outpatient specialty clinics.   We are also a provider for the county’s Medi-Cal program for patients with co-occurring medical illnesses and psychiatric disorders.

Q: What are your most common diagnoses?
A: Anxiety, depression, ADHD

Q:  What inspires you most about the care being delivered here at CHOC?
A: It’s comprehensive and we are always striving to do better.

Q: Why did you decide to become a doctor?
A: At the age of 19 and having graduated from college, I was working as a software engineer at a startup, and there was a realization that there was more to life than what I was doing.

Q: If you weren’t a physician, what would you be and why?
A:  Ideally, a rock and roll star, but most likely a software entrepreneur because I like to create new solutions.

Q: What are your hobbies/interests outside of work?
A: I enjoy being with my five children and participating in their activities. I’m also very active in practicing my faith. In my spare time, I enjoy outdoor activities and playing tennis.

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Health & Safety

Melon Mania!

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By Stephanie Prideaux, Dietetic Technician, Registered

Children are mostly back in school, the fair has packed up its things, and summer, I’m afraid, is coming to a close. Although we might not have all the free time or outdoor movies in the park, we can hold on to summer through many of our favorite foods that are still in season. Melons, the snack I brought to almost every single gathering this year, are in season through as late as November, depending on the variety. Seasonal fruit means budget-friendly prices. Use this opportunity to sample melons you may have never heard of, such as canary melon or Santa Claus melon (also known as piel de sapo).

Melons are one of the ultimate warm weather snacks for their juiciness and refreshing mildly sweet flavor. In fact, melons like watermelon and honeydew are made of about 90 percent water. Their natural sweetness is a great substitute for sugary desserts or sugary beverages. Melons can even be transformed into delicious drinks with little to no added sugar, such as in the style of aguas frescas. Healthy frozen desserts such as snow cones or popsicles can be made from melons, such as in the recipe below. When in a pinch for time, skewered melon chunks are an easy option that kids love—and it’s a great way to taste test new types of melon.

You don’t have to be a culinary artist to transform melons into amazing things. With a little experimentation, or a recipe like the one below, melons can be used in ways that may not commonly come to mind. Never underestimate the deliciousness of any fruit with some lemon juice and chili powder. Melons can even be made into salsas and soups, or grilled or pickled.. Their mild but distinct flavor allows them to be served with fish, chicken, in tacos, as a dip, or in countless other ways.

Adding melon to main dishes is a unique and colorful way to pack in extra nutritional value, too. Melons are notorious for being great sources of vitamin C, which is perfect for children. Vitamin C is an antioxidant that protects their growing bodies against damage from the sun, air pollution, cigarette smoke and more. . This vitamin is also used to make collagen, which can help heal wounds from playtime cuts and scrapes. Iron deficiency is a common condition affecting children, but vitamin C can combat this by increasing the amount of iron their bodies absorb when eaten at the same time as meat, fish, poultry, beans, lentils, spinach, peas, nuts or raisins.

Melons are also good sources of dietary fiber, which prevents constipation and promotes heart health. Cantaloupe and watermelon, with their bright red and orange colors, are also good sources of vitamin A. This vitamin plays key roles in normal vision, immunity, future reproduction, as well as normal organ function. Potassium, essential for brain and nerve function, muscle growth and function, in addition to water balance, can also be easily found in cantaloupes. The list goes on and on. All melons are well-rounded and scrumptious sources of nutrients essential for growth, energy, normal function.

MELONS & FOOD SAFETY

Melons are nutrition powerhouses, but improperly handled food can spoil the fun. Remember, melons grow in the ground sitting on dirt. This is why melons should always be washed and scrubbed prior to slicing into it. If not, we risk moving any illness-causing bacteria from the outside of the melon to the inside. Be sure to wash your hands and never use an unwashed knife or cutting board–especially if it was used for meat. Once cut, keep melon cold or else discard after two hours of being at room.

RECIPES

Honeydew Avocado Salsa

zest of one lime

2 tbsp lime juice

1 tbsp olive oil

2 ½ cups honeydew melon, diced

avocado, diced

salt and pepper, to taste

Simply toss ingredients together and enjoy!

Variations:  toss diced melon and/or any other fruit with lime juice, green onions, chiles and herbs for versatility.

Minted Watermelon Popsicles

4 cups seedless watermelon, diced

2 tbsp sugar

¼ cup mint leaves, minced

2 tsp    lemon zest, finely grated

pinch of salt

Puree watermelon with sugar in a blender or food processor until smooth. Stir in remaining ingredients and pour into ice cube trays or popsicle molds. Freeze until hard, about three hours, inserting popsicle sticks halfway through freezing.

Variations:  cantaloupe with lemon juice; honeydew with lemon juice and cinnamon; watermelon with lime juice and cayenne

Recipe Sources:  Food & Wine

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