Talking to Your Child – Medical Expressions

Words have different meanings and can be confusing to a young child. It is likely that your child will hear standard medical expressions but not understand the meaning. Consider using child-friendly explanations when communicating with your child about their medical care. To ensure they are not misunderstood and that your child isn’t confused, here is some suggested language. Ideally, children should be asked if they know what the doctors or nurses mean when they say these words.

 

Medical expression: “The doctor will give you some ‘dye’.”
Your child may hear: “This is going to make me die?”
Suggested language: “The doctor will put medicine in the tube to be able to see your _____ more clearly.


Medical expression: “Shot”
Your child may hear: “Are they mad at me? When people get shot, they are badly hurt. Are they trying to hurt me?”
Suggested language: Instead of “shot,” refer to this as giving medicine through a small, tiny needle.


Medical expression: “CAT scan”
Your child may hear: “Will the be cats? Or something that scratches?”
Suggested language: Describe a CAT scan in simple terms such as “a machine that lets us see the inside of your body,” and explain what the acronym stands for.


Medical expression: “IV”
Your child may hear: “Ivy?”
Suggested language: Explain to your child that an IV is a tiny tube or straw that goes into their vein (hand) that gives their body water or it’s a fast way to give your child medicine.


Medical expression: “We’re going to take a picture.” X-rays, CT and MRI machines are for larger than a familiar camera, move differently and don’t yield a familiar end product.
Your child may feel like this: “I don’t feel like smiling.”
Suggested language: “These are machines that we use to take a picture of the inside of your body.” Describe the appearance, sound and movement of the equipment your child to help address any fears.


Medical expression: “We’re going to put you to sleep.”
Your child may hear: “Like my cat was put to sleep? It never came back.”
Suggested language: Explain that the medicine your child will be given will help them go into a very deep sleep. Explain that they won’t feel anything until the operation is over, and then the doctor will stop giving them the medicine so they can wake up.


Medical expression: “Take your vital signs.”
Child-friendly explanation: “We are going to measure your temperature and see how warm your body is.” Or, “We are going to see how fast and strong your heart is working.”


Medical expression: “Anesthesia”
Child-friendly explanation: Explain to your child that the doctor will give him or her medicine called ‘anesthesia’ and that it will help them sleep during their operation or procedure.


Medical expression: “Say goodbye to your parents.”
Child-friendly explanation: If you hear someone say this to your child, explain to your child that he or she doesn’t have to say goodbye but rather “see you later.” Explain to your child that you will see them in just a little while.


Hard or harsh term: “This will hurt.”
Child-friendly term: “You may feel very sore, achy, scratchy, tight, snug or full, etc.” Use manageable, descriptive terms. Words such as scratch, poke or sting might be familiar for some children and frightening to others.


Hard or harsh term: “The medicine will burn.”
Child-friendly term: “Some children say they feel a very warm feeling.”

Sing Me a Story

David Treadway, AKA Mississippi Dave, is an independent song writer with an eclectic folk/alternative style.

David Treadway

Gabe Sipos is a 13-year-old cancer survivor with a story to tell.

The two were recently “connected” through a nonprofit organization called Sing Me a Story – a network of more than 1,500 songwriters who create songs based on the ideas obtained from stories or illustrations submitted by children from all over the world.

During one of the workshops held at Gilda’s Club Nashville, Gabe had the opportunity to write a story about himself and Chemo Duck.

“I was really scared at the hospital until one day my mom had an idea,” reads Gabe’s story titled ‘And That’s My Life’. “She put a duck plushie in hospital scrubs and put a port on it and she gave it to me. It allowed my fears to go away…”

Gilda’s Club submitted the story to the online group, which in turn distributes them on its website. Volunteer songwriters choose a story and then record and upload a song onto the website.

Since 2011, Sing Me A Story has transformed children’s stories into songs as a fundraiser for almost 50 partnering organizations like Gilda’s and Alive Hospice. Donors are able to go to the website, select a song from the collection, make a contribution and receive a copy of the chosen song.

Each child receives a copy of his or her song as well.

“Sing Me A Story is just a wonderful idea,” said Treadway. “It is a great opportunity for songwriters to use their powers for good. But most of all it’s a chance for kids to use their creativity and express things that matter to them as a way to heal or grow in some way.

Treadway spent a few days brainstorming ideas for Gabe’s song wanting to ensure that it was hopeful and encouraging.

“Gabe and all kids who go through these kinds of battles deserve some serious credit for what they go through,” explains Treadway. “Working with Gabe’s story impacted me because it challenged me as a songwriter to stretch beyond what I’d usually tackle topic-wise.”

David said the project was fun and is looking forward to participating in another story to song venture soon.

Lyrics from The Chemo Duck:

Whenever I’m scared and feeling down

There is no problem too big I’ve found

When the weight of the world is heavy on my back

I will raise my voice and let out a quack

Cause I’ve got a secret weapon when I am feeling stuck

And I’m never gonna let them tell me to give up

I found myself a best friend with feathers made of plush

Don’t let that fool you cause

He’s as tough as a stuffed duck comes – my friend, my friend the chemo duck.

A Pathway for Parents, from Parents: Part V

We will continue to discuss the different chapters from our digital Parent-to-Parent Guide. This month we are featuring the Financial Plan.

Coping and understanding your child’s cancer and treatment plans can be stressful in itself. Most caregivers are forced to stop working in order to care for their child. Throwing the financial jumble into the mix is another challenging hardship that families face. So, what can you do to ease financial stress?

The first people you should speak with is someone from the hospital support staff such as a social worker. A social worker can be helpful in helping your family make financial changes because he or she usually knows of any funds that can help ease the financial burden, as well as apply for government assistance your family qualifies for. If you are a member of a church or temple, they may be willing to help set up a fund for out-of-pocket medical expenses. It can also help to decide what household expenses are necessities and which are luxuries. For example—expanded cable packages, wireless telephone bills, eating out, etc.

Monetary donations made to your family are considered gifts and are not taxable. In order to deduct your child’s medical expenses, the cost must be more than 7½% of your income for the year. (Given that tax laws remain the same.) Keep all of your receipts- gas, food, prescriptions, travel mileage and lodging. It’s smart to hire a tax preparer to assist you with your taxes the year of your child’s treatment. A licensed professional will be able to optimize your tax deductions.

It’s no surprise that hospital and doctor bills can become extremely confusing during your child’s treatment. It can be helpful to call the hospital billing department once a month to update your bills and combine them when possible. It’s important to remember that physicians charge separately from the hospital, make sure to take care of both sets of bills.

Remember that it takes a few months to adjust financially to having a child with cancer. Hopefully this financial plan can assist with guiding your family through this journey.

Just What the Doctor Ordered

How do you tell a four-year-old she has cancer?

What is the best way to explain the multitude of medical procedures she will undergo?

The prescription: Chemo Duck. 

“We had no idea how to tell our daughter what was going on,” said Jonathon Swersey, dad to Belle. “We asked the doctor what he suggested. He said to show her what is going to happen on an inanimate object.”

“We were in the resource room and we saw him – a really cute duck. It was in the first week of diagnosis and we were trying to get used to our surroundings, the diagnosis and our own feelings. We went to take a look at him and he had a bandana and a tubbie,” recalls Jonathon.

“We knew this is what we needed to help Belle through this journey.”

Belle was born with neurofibromatosis type 1 (NF1), a genetic condition characterized by changes in skin coloring (café-au-lait spots) and the growth of benign tumors along nerves in the skin, brain and other parts of the body. Some affected individuals also develop optic gliomas, tumors that grow along the nerve leading from the eye to the brain. The condition occurs in one in 4,000 people worldwide.

Belle is followed closely by a team of physicians. When she developed a tumor in her jaw that began to grow, doctors conducted several tests including a biopsy. It showed she had rhabdomyosarcoma – a cancer made up of cells that normally develop into skeletal muscles.

Her treatment regime calls for 54 weeks of chemotherapy plus surgery and/or radiation therapy, said her dad.

“Belle is incredibly self-aware and opinionated,” said Jonathon. “Chemo Duck really helped in the process of educating her.”

“She plays with him and it resonates with her. We talk about how the duck is feeling and she is able to relay how she is feeling as well. It is a great tool to talk to children about the disease and cancer treatments in an age appropriate way where you can still be candid and honest.”

Jonathon said Chemo Duck has also been very helpful in teaching their youngest daughter, Sadie, about how to interact with Belle (by not pulling her on her tubbies).

Belle is treated at the Dana Farber Cancer Institute in Boston and frequently visits The Jimmy Clinic for treatments and check-ups. She recently sent a letter to the Chemo Duck creator to express their gratitude for the teaching tool.

In return, they received a surprising gift: a video from 13-year-old Gabe Sipos, who was diagnosed with rhabdomyoscaroma in 2002.

“She plays that video over and over,” said Jonathon. “Gabe’s message is very understandable for her and it helped us help her feel stronger and in control.”

Jonathon said the support they received from Chemo Duck has offered them hope.

“This program really makes you believe in the positive and the longterm,” he said. “It has reinforced our hope.”

A Pathway for Parents, from Parents: Part III

This month we are continuing to discuss the different chapters from out digital Parent-to-Parent Guide. Following the Education Plan featured in last month’s e-newsletter is the Support Plan.

The first key to creating an effective support plan is to identify your unique needs. Each family has to make different adjustments so it’s important to recognize these needs. The first months are a huge adjustment period and you should not be shy about asking for help. From making emergency arrangements for siblings, to caring for pets or even watering your plants, don’t hesitate to ask and rely on others. The help you need may be in the form of something physical or be more spiritual in nature.

“We relied a lot on friends and family preparing meals for us. We especially needed them whenever we would come home from a hospitalization. Usually it would be right around supper time when we’d get home and the last thing I wanted to do was fix something to eat,” said Tiffany.

We encourage you to create a list of ways in which people can help you. Keep in mind that you will be spending much more time at the hospital and taking care of your child’s changing needs.

After you have identified your unique needs the next step is to identify your support group. Some families are lucky enough to be able to rely on family who live nearby. When family doesn’t live geographically close, the devastating event such as a diagnosis of cancer can be a little more complicated. If friends and neighbors are aware of your circumstances they are usually waiting to help you in any way they can. By allowing your friends to help, you are not only developing a closer friendship, but also creating a support group. Our families always re-iterate that if possible, you should find a way to get around feeling guilty and rely on friends for help.

“One thing I learned was that your friends, family and people you have never met before will be coming through the walls to do things for you, so get over how it makes you feel and just ask,” said Kim.

Leah’s Lifesaver

Leah Trujillo has made up for lost time.

For six months the nine-year-old received her chemotherapy treatments for PH+ ALL mostly isolated in her hospital room.

Because of frequent bouts with neutropenia, Leah was at increased risk of developing serious infections. There were too few white blood cells needed to fight off harmful viruses and illnesses. For her own protection, it was best she stayed separated from the rest of the patient population.

Things can get a bit lonesome day after day behind closed doors. Leah Trujillo

Thankfully, a child life specialist at the Children’s Memorial Hospital in Colorado Springs introduced her to Chemo Duck.

There was an immediate connection, said Leah’s mom Charis Trujillo. According to Charis, the two are rarely apart.

“It was truly a lifesaver,” said Charis. “The day Chemo Duck was given to her, she wasn’t feeling well at all. It had been a really, really rough day.

“It was the only thing that brought a smile to her face,” recalled her mom. “And it wasn’t just a little one, it was a huge smile.”

That night Charis spent hours making videos of her daughter playing with her duck.

Chemo Duck has served as a great tool for Leah to educate her family about the therapies and routine medical procedures she experiences, said Charis.

“It’s amazing because it really keeps her mind off things,” she said. “She has other things to play with, but this is hands-on, which is what keeps her so occupied.”

“I think Chemo Duck is so special because kids who are going through these treatments – this is relatable to them. Leah is so attached to Chemo Duck because it is just like her, port and all. She connects to him in a way she can’t with her other toys.”

“It’s not a toy to her,” admits Trujillo. “I see that he brings her comfort too.”

Trujillo is thankful that people from all over the country are in tune to the positive impact Chemo Duck has on pediatric cancer patients. She knows that the generosity of donors allowed her youngest daughter to be empowered by a yellow, pajama clad, 12-inch stuffed animal.

Sometimes the biggest gifts come in the smallest packages.

Saving Live’s is on Abigail’s Radar

Abigail Cline knows what it means to save a person’s life. She does it everyday as a firefighter and paramedic for Springfield Township Fire in Ohio. Abigail and Radar

She also knows what it feels like to be on the other end, requiring lifesaving measures.

At 15 years old, she was diagnosed with Hodgkin lymphoma, a cancer of the lymph tissue. As a teenager, stuffed animals were not necessarily the first gift requested, but Chemo Duck was different.

Abigail said her mom found an article in a magazine about Chemo Duck and decided to get her one. She is glad her mom did.

“I carried my duck everywhere,” laughed Abigail. “He was like my pillow on long drives to the hospital. He was my comfort during treatments in clinic and while I was in the hospital.

“I even carried him with me when I went to school. I mean I had him with me all the time.”

As part of the yearlong treatment regime, patients routinely undergo radiation. But when doctors explained that the radiation therapy would affect her ability to have children as well as potentially increase the risk she would develop breast cancer, Abigail refused it.

Abigail & Radar at the RelayHer fear of the radiation was also the rationale behind naming her duck Radar, short for radiation.

“I could not even go past the radiation area in the hospital without freaking out,” she recalled. “I thought naming him Radar would help me.

“When you are 15 or 16 and you are really sick, you revert to being a little kid,” said Abigail, now 22. “You are so scared. Having Radar with me made a difference.” Abigail & Radar at the Relay

While she was undergoing cancer treatments, her aunt was also fighting the disease, which allowed Abigail to explain to her younger cousins what their mom was experiencing.

“It really does help kids understand,” she said. “I could see how nurses would be able to use the duck to show and explain to them what was going on. It’s really a great thing.”

Today Radar resides on Abigail’s nightstand.

Over the summer she brought him along to the Relay for Life, a 24-hour long fundraiser for the American Cancer Society. Her squad donned full gear (air tanks included) and walked until the tanks ran out. Radar was tucked safely in Abigail’s pant pocket as she completed multiple laps.

The Ultimate Comfort

Soon after her son was diagnosed with a brain cancer called anaplastic ependymoma, Lisa DeYoung was scanning through a brain tumor foundation website and stumbled upon Chemo Duck.

She had no idea that Chemo Duck existed and is so glad she purchased one for her then 3 year old son.

The comfort and connection Chemo Duck brought to Jack was enormous, she said.

“He had lots of toys and things to play with and distract him, but none of them was like him,” said DeYoung. “I wanted to get him something that he could identify with and looked like him. It turned out to be one of the best things ever.”

Athough Jack, now 8 years old, is no longer in treatment, Chemo Duck is still close by.

“He had Chemo Duck with him the whole time we were in the hospital and when we had appointments,” she recalled. “Through the years he just got very attached to him. He still sleeps with him.”

The bright yellow stuffed animal not only served as an educational tool during his treatments, but became so much more.

“Chemo Duck is important for kids like Jack who are going through a lot of scary and new things,” said his mom. “Being able to show Jack and kids like him what is going to happen really helps allay their fears. He is an invaluable teaching tool and a source of comfort for kids going through cancer treatments.”

Each duck comes outfitted with a catheter sewn into its chest to resemble the line that is central to a chemotherapy patient’s treatment. Jack’s Chemo Duck has an additional resemblance – an incision to match that of his owner.

For the DeYoungs, it helped their son to be able to interact with something that was very similar to himself.

“Chemo Duck was the only toy he had that could be just like him,” she explained. “He was able to play with Chemo Duck in ways he couldn’t play with his other toys and he would hook up a feeding tube to him.”

Reducing Nausea

A child experiencing nausea and vomiting becomes a source of stress and anxiety for any parent. Usually the symptoms pass quickly and it is not necessary to feed your child much more than a bowl of chicken noodle soup. However, when children experience prolonged bouts of nausea, common in chemo treatment, it becomes important to identify foods that will not aggravate the situation and will be agreeable to an unsettled tummy. These tips are great for children that are feeling queasy for any number of reasons! – Lu Sipos 

Ways to Reduce Nausea:

  • try foods with minimal odor (scent of food can trigger nausea), such as baked or boiled chicken breast, plain pasta
  • dill pickles may help with the metallic taste sensation caused by chemotherapy
  • offer dry cereal, crackers, toast in the morning as low blood sugar can trigger nausea
  • offer snacks before bedtime or even the middle of the night to avoid an empty tummy
  • find foods your child can tolerate, add one food per day for variety
  • use a cold cloth over eyes when nausea strikes
  • sip clear liquids: tea and Ginger Ale may decrease nausea, flat soda pop
  • avoid fatty, greasy, or fried foods
  • avoid icy drinks, very carbonated drinks, very hot drinks
    tepid peppermint tea
  • Jell-O
  • try the BRAT diet foods: bananas, rice, apples/natural applesauce, toast
    offer Queasy Pops

Help! My child isn’t eating properly…

 During cancer treatment, a child’s appetite is so intermittent and unpredictable that it seems like food and eating become a minefield for parents to navigate. For the next few months, we are partnering with Melissa Sharp from Another Lunch to offer options and ideas to families living with this challenge. Her flair for nutrition and making food fun makes her the perfect fit for the series. Although the collaboration was conceived to assist children living with cancer, these ideas and recipes translate to any number of situations and illnesses that affect appetite. The topics for the series will include how to best add calories, encourage eating, reduce nausea, and ease sore mouths.

Adding Calories
My son, Gabe, was only 12 months old when he was diagnosed with cancer. At that time, experience led the surgeons to think they should implant a gastric feeding tube during his chemotherapy port surgery. The doctors assumed that since he was so young he would be unable to keep his weight stable without nutritional supplements. Gabe’s oncologist decided that it was better to “wait and see” what happened with his weight and nourishment. We, Gabe’s parents, found ways to add calories to his food whenever he felt like eating and he did manage to maintain his weight throughout treatment. These ideas can be used help supplement the diets of any child who struggles to gain weight or needs to supplement their diet. – Lu Sipos

  • Use full-fat dairy products: calorie-rich whole milk as a beverage and as an ingredient when making meals such as cereal, macaroni and cheese, pudding, etc.
  • Add dry milk powder to mashed potatoes, pancake batter, etc.
  • Drizzle extra virgin olive oil on pasta and noodle dishes
  • Add extra noodles to soups
  • Offer French Toast instead of plain bread or toast and add butter
  • Frying foods and breading before frying adds a lot of needed calories
  • Create kid-approved smoothies by blending fruits with whole milk. Add honey and an instant breakfast mix for added calories and sweetness. Adding frozen yogurt or ice cream punches up the calorie content even more.
  • Spread peanut butter on crackers and use as a dip for fruits and veggies. For a super boost of calories make Super Peanut Butter (recipe below) in lieu of regular peanut butter.

Super Peanut Butter Recipe 
Ingredients:
1 tablespoon of dried milk powder
1 tablespoon of honey
1 teaspoon of water5 tablespoon of peanut butter
1 teaspoon of vanilla extract

Directions:
Combine dry milk, water, vanilla in a small bowl and stir until moistened.
Add honey and peanut butter. Mix until well combined.
Mixture can be stored in the refrigerator, but will be difficult to spread when cold.
Bring Super Peanut Butter to room temperature for easy spreading.