Meet Madeline and her fluffy friend, Scooter

In just three months, Madeline will be three years old. And just one month ago, only a few days after Christmas, she was diagnosed with Acute Lymphoblastic Leukemia.

No family can ever truly prepare for hearing that their child has cancer. All they can do is look ahead to what’s next and what can be done to help. For Madeline and her family, that meant starting cancer treatment at Children’s Mercy Hospital in Kansas City. 

Shortly after beginning treatment, one of the nurses at the hospital introduced Madeline to a cuddly companion who would quickly become a member of the family.

He was a Chemo Duck, given to Madeline to help explain the cancer treatment process in a way that would make sense to an almost-three-year-old child. Madeline took to him immediately and pretty soon he had a name: Scooter.

Madeline has enjoyed getting to spend time with Scooter all day and all night. And she can relate so well to his port and tube because she has a port and tube, too!

More than just the duck itself, Madeline has enjoyed getting stamps in her Chemo Duck passport every time she makes a trip to the clinic.

When she’s not receiving treatment or cuddling with Scooter, Madeline enjoys painting her nails with her mom, playing with her Peppa Pig people and her dollhouse, or watching Sheriff Callie.

“Chemo Duck has made this process a little easier for her to understand,” explained Madeline’s mom, Emily. “She loves him!”

We think it’s safe to say that Scooter is a welcomed addition to the family — and he will proudly provide comfort to Madeline and her family for as long as he is needed.

Meet Alexis and her friend Pato Lucas

On January 5, 2017, Alexis was diagnosed with leukemia. She was seven years old.

Despite her diagnosis, Alexis found hope and comfort in the Chemo Duck she was given by her doctor at the Children’s Blood and Cancer Center in Austin, Texas.

“It was the only thing that would make me smile, even when I was sad,” said Alexis, who celebrated her 8th birthday in May. “It reminded me of a pet duck my grandmother used to have. I actually named him Pato Lucas like my grandmother’s duck.”

Now, wherever Alexis goes, Pato Lucas goes, too. Alexis uses Pato Lucas to explain her situation to other kids and adults. Having Pato Lucas nearby has helped show her that she’s not alone in her journey.

“I get sad when I forget to bring him to my appointments because I know if he doesn’t go he won’t get better soon,” Alexis explained. “I love him with all my heart, he is just like me in every single way. He doesn’t have hair like me and he has a port, too. It makes me so happy just to see him and cuddle with him.”

Just as Pato Lucas has been a comfort to Alexis, she has been a comforting friend to others in her situation.

“She was a great help with another girl who was diagnosed after her,” said Alexis’ mom, Norma. “She helped her with her fear of accessing her port. She showed her a couple of tricks for her not to be afraid when getting it done. They are pretty good friends now and the girl is no longer afraid.”

Alexis also loves to help out at the clinic by talking to other kids about her experience and the way she sometimes feels about what is happening.

“It helps her and them at the same time,” explained Norma. “She has grown so much after this and her way of seeing things has changed, too.”

When Alexis isn’t spending her days spreading hope and joy to others at the clinic, she can be found spending time with her parents, her brother Luis and her step-siblings Alex, Chris, Kristy and Frankie.

Everyone with Gabe’s Chemo Duck Program is so thankful that Alexis was willing to share her story. Her sweet, caring spirit is a gift to us all!

Zack Finds Lifelong Friend in Chemo Duck

You may recognize Zack as the boy behind one of our adorable Chemo Duck cartoon characters. This is his story…zack

Three days before his third birthday, Zack’s parents received the worst news a parent can hear: “your son has cancer.”

Not long after his diagnosis, their local hospital in the UK, Birmingham Children’s Hospital, gave Zack the hope and comfort he needed — his very own Chemo Duck.

“Zack was very excited about his duck,” said Zack’s father, Ian. “He used his duck two-fold. The doctors would use the duck to show him what they were going to do and then he would do it to the duck as well — many times over!”

They also added accessories to the Chemo Duck as needed. For example, the duck still has a cut-down NG tube from when Zack had to have one for a few months. They also gave Zack a toy medical kit, which he loved to use on the duck.

After three years, Zack finished his last chemo treatment in March 2011. Although he will continue to have yearly check-ups indefinitely, he is now considered a full-fledge cancer survivor!

When asked about what he would share with other parents who are going through the journey of cancer with their child, Ian’s father said, “Time does pass, things do get better! Zack was under treatment for almost three years, but it has been almost six years since his treatment stopped. It is both the longest and fastest time I have ever experienced.”

Ian continues, “Never give up, never doubt. Cry you heart out — let it all go! Accept all the help you are offered. You can always turn it down later, but if you say no first, they may not offer again. Don’t be too proud. And lastly, while this can be an incredibly challenging experience for you and your child, it’s important to do whatever it takes to minimize the bad times and maximize the good ones!”

Today, Zack is still dealing with a wide range of issues, including Klinefelter Syndrome, brain damage from chemo (which is extremely rare), Autism, Global Developmental Delays and Epilepsy.

And while he is emotionally and educationally behind in comparison to his physical age, overall he is a very genuinely happy, warm and loving boy! He loves anything fire, fire engine or fireman-related and is in the Special Needs arm of the Fire Cadets. He also loves anything transport-related and can often be found playing pretend, driving a taxi, fire engine, bus or plane in his mind — and when they “break down,” he is quick to step in and fix them.

“He is becoming ever more aware that he is different,” said Ian. “But he battles on regardless. He will always provide a smile when asked and will share almost anything with you if you’ll be his friend. Anyone who spends even a little time with him say they love him — he is just one of those lovable type of people!”

Everyone with the Gabe’s Chemo Duck Program is thrilled to have Zack as a member of our Chemo Duck gang. His perseverance and positive-attitude is an inspiration to us all!

Gift Giving Guide for Kids with Cancer

When a child is diagnosed with cancer everyone feels helpless. Despite our best efforts, it is difficult to know what to do for the family. If you’re looking to help the family by offering your time and talents, you should take a peek at our Parent-to-Parent Guide and download the “Support Plan” section for ways to help out and great planning tools to assist you with becoming a part of the families’ support team.

If you do not live close to the family but would like to offer a gift to show your support, or are simply looking for a way to show the child or family you care at this holiday time, here are five great gift ideas for children and families in cancer treatment:

The Comfort of Home

When children spend a great deal of time hospitalized, they usually like to personalize their hospital room as much as possible. Taking blankets and pillows from home can be a great way to make the room feel cozy and functional at the same time.

    • Bed Rest Pillows
      Bed rest pillows allow the child to rest in a sitting position on something comfortable. For examples of fun bed rest pillows, visit Bed Bath and Beyond and check out a variety of colors, textures and a even some college football themes!
    • A Medical Kit
      Putting together a medical kit that contains one or more of the following useful items is a great way to show your support for a child or family. Ideas for valuable items include:
    • Hand sanitizer
      Try finding a brand that is organic or moisturizes since sanitizer can be rough on hands when used as much as a family living with cancer uses it.
    • The gift of pain free shots with Buzzy®
      Buzzy® is simply a bee-shaped ice pack that vibrates and can be used for natural pain relief. It can be used on any sharp pain, itches and burns. The vibration and cold desensitize the body’s nerves and dull or eliminate pain.
    • Sippy Sure Medicine Dispensing Sippy Cup
      Any way we can help kids take oral medication is a benefit. This sippy cup has a hidden medicine dispenser that snaps into place to make the task so much easier. Along the same lines Ava the elephant makes medicine fun! 
    • A GOOD Thermometer
      Accurate temperature readings are very important to families living with childhood cancer. Ear thermometers are fast and non-invasive.
    • Picc Line Covers
      It’s a good idea to keep peripheral IV lines covered so kids don’t pull at them. Etsy has some fun and funky covers so kids of all ages can cover Picc Lines with pride.
  • G Tube Protectors
    Not all children in cancer treatment need NG or G tubes, but if they do, here are a couple of fantastic products:

The Gift of Good Food

Consider offering your friends the gift of a good meal while they are experiencing a hospital stay. Restaurant gift certificates make this possible even when you’re not able to deliver it yourself. You can research restaurants that are located close to the hospital and provide delivery service. Be sure to include a menu for the restaurant (usually available to print on the restaurant’s website) and cash for to tip the driver.

The Gift of Preparation

Car totes are a useful gift for families who may experience unplanned hospital visits. They can be packed with snacks, blankets and hospital stay essentials and left by the door or in the car. You can provide this gift empty or filled with useful home away from home items.

The Gift of Knowledge and Education

Gabe’s Chemo Duck Program is devoted to educating families about childhood cancer. When we know what to expect we are better prepared and less anxious.

Besides our famous Chemo Duck, we offer many products free of charge to assist families during this time.

Feel free to print out any of our useful tools such as our:

Gabe Goes to England

It has been an incredible month for all of us at Chemo Duck.

Gabe’s mom, Lu, is from Yorkshire in Great Britain and this past month, Gabe was able to fly overseas to meet his English relatives. But this wasn’t just a normal visit —Gabe was going overseas to see some very important people and places that remain near and dear to Chemo Duck and its mission.

The first stop on their trip? A visit with the Phillips family. Lu and Andrew Phillips have been working together closely for years. Andrew’s son, Harry, just finished his own cancer treatment journey and Andrew had originally reached out to Chemo Duck for support.

What began as a simple request for help has transformed into a lifelong friendship. Not only that, Andrew was so impressed with Chemo Duck that he decided to help store and share Chemo Ducks within the U.K.

This venture became so popular that Andrew decided to created the ‘Give a Duck U.K.’ program, which helps raise funds to deliver Chemo Ducks to children in the U.K.

After a quick catch-up session, Gabe and the Phillips family then made their way over to Leeds Children’s Hospital, which has embraced Chemo Duck as a teaching tool. This was the first hospital in the U.K. to introduce Chemo Ducks onto the wards and these were generously funded and imported by Candlelighters, Yorkshire’s children’s cancer charity.

Candlelighters have worked with the Phillips family for several years. Originally the family stepped in to simplify the shipping process. This was promptly followed up with a huge fundraising campaign to fund the Candlelighters program, which has raised almost £100,000 so far for the charity.

Gabe visited the Clarendon Wing and met with children who are currently undergoing cancer treatment and whose lives have been touched by Chemo Duck. For example, the Leeds team has even introduced specially made outfits for their Chemo Ducks, which are handmade by a volunteer group at the Rivers Meet Café, and children can choose a new one every month.

The hospital also happened to be where Gabe’s Gran received her cancer treatment, and his aunt is currently being treated, so this visit was very meaningful on several levels!

Seeing how readily hospitals in the U.K. are embracing Chemo Duck has inspired Gabe, Lu and the rest of the Chemo Duck team to bring some of these ideas back to hospitals in the U.S.

Watch an overview of Gabe’s trip to the U.K.

Chemo Duck Shares More Love

There was so much love for some of our local nonprofits that it’s spilling over into another newsletter!

Gilda’s Club Nashville and Dreams and Wishes of Tennessee have been longtime friends of Chemo Duck and we want to share the great things each group is doing for children with cancer.

Gilda’s Club is an affiliate of the Cancer Support Community and is dedicated to providing support, education and hope to all people impacted by cancer. All of the programs offered at the clubhouse are free of charge including support groups, healthy lifestyle workshops, mind-body classes, social activities, educational lectures and community resource information.

Felice Apolinsky, LCSW, program director at the Nashville Gilda’s, said the mission of Chemo Duck and Gilda’s is very closely aligned.

“Chemo Duck is a remarkable educational and emotionally supportive tool,” said Apolinsky. “Not just for the child, but for the parents of the diagnosed child, for their siblings and their friends. It’s a conversation starter, a non-threatening way to talk about difficult topics…improve communication and help make something that is really terrifying – cancer – less terrifying.

“We too focus on education, support, empowerment and building community. Knowledge creates empowerment, and empowerment creates confidence and comfort.”

The Sipos’ have been participants at Gilda’s Club Nashville for more than a decade.

“I owe a great deal to Gilda’s Club both professionally and personally,” said Sipos. “Chemo Duck has partnered with Gilda’s Club for many years to provide emotional support for children living with cancer. We could not imagine working with a more amazing organization.”

Chemo Duck has served as an inspiration for the founder of Dreams and Wishes of Tennessee, Tanya Sturm.

The organization grants wishes to individuals between the ages of 5–21 who have relapsed from cancer. It also assists with granting wishes to young adults with life threatening illnesses who have never received a wish from other wish granting groups.

“Over the years I have become close to Lu and Gabe,” said Sturm. “I actually still have one of the original Chemo Ducks in my office. Lu has been an inspiration to me.

“I love Chemo Duck and all that it stands for. It’s a fabulous nonprofit and they have helped so many kids.”

Sipos seconds Sturm’s sentiments for Dreams and Wishes.

“Tonya is a huge inspiration to me,” said Sipos. “She is incredibly dedicated to helping children achieve their wishes, and her love for those children is so tangible! It is truly inspiring to watch Dreams and Wishes grow.”

Comfort and Companionship for Carter

When four-year old Carter Piglowski was admitted to Helen DeVos Children’s Hospital in Grand Rapids, Michigan the family had no idea of what was ahead. 

They were thankful for the Pediatric Oncology Resource Team (PORT) who brought bags of essentials like toiletries, snacks and other items for newly diagnosed patients. Chemo Duck was tucked among the goodies. 

Carter named his newest companion Coocoo Doodles.

“I think Coocoo Doodles really helps Carter not feel so afraid during some of his clinic visits,” said his mom Mandy. “It might sound weird, but he has formed a real bond with his duck. Coocoo Doodles is an example for Carter and gives him a way to express how he feels.”

“Plus he has something that has some of the same things he has and is going through some of the same procedures.”

Carter was diagnosed in September 2015 with Acute Lymphoblastic Leukemia (ALL) and was not accustomed to all the medical personnel and treatments. His mom noticed after being introduced to Chemo Duck, his anxiety lessened.

“Chemo Duck helps kids understand what is going on and makes them feel not so alone in the process,” she said. “When we go to clinic, Coocoo Doodles is accessed first. Carter helps do that and then they access Carter’s port. It’s a real team effort.”

Mandy said Carter loves bringing his Chemo Duck to family functions and showing everyone what happens when he is at clinic or in the hospital.

“He has taught everyone how to clean his tubbies and how they put his medicine in them,” she said.

The family, who lives in Mount Pleasant, Michigan, has a nearly two-hour drive to the hospital where Carter is treated. During the ride, Mandy says she can tell Carter finds comfort in his Chemo Duck.

“I like how it makes Carter feel safe,” she said. “It’s like a security blanket for him when we are going to clinic.”

Chemo Duck Shares the Love

There are so many things patients and families love about Chemo Duck. But this time, we want to want to share the love. 

Here are two groups Chemo Duck loves to quack about: The Cooper Trooper Foundation and The Sarah Grace Foundation.

The Cooper Trooper Foundation (CTF) supports the fight against cancer in two ways – one by raising money to help fund research into pediatric cancer and the other by helping distribute Huggable Hope, the companion to Chemo Duck for siblings of patients going through cancer treatment.

Huggable Hope is part of the Courage Kit created by CTF. The organization sends out hundreds of kits every year to siblings all across the country.

“It’s hard to balance giving them the attention they need when you are caring for a sick child,” said Missy Cook, founder of CTF. “They are unintentionally left out. They are the heroes in the shadows and this was a small way to let brothers and sisters know they are very much a part of the fight.

“Our kit is intended to support siblings, celebrate them and encourage them.”

Cook, whose youngest child will be cancer free for six years, knows first-hand the need for sibling interaction. Her two older children were inspiration for the kits.

CTF compliments the work that Lu Sipos, founder of Chemo Duck, strives to achieve.

“We are not able to serve any of the siblings through our program,” said Sipos. “We absolutely love partnering with Cooper’s Troopers because they are doing all the same things we are focused on, but with the sibling in mind. They are a wonderful resource and we love their mission.”

Sipos says she was one lucky duck to learn about the Sarah Grace Foundation, which helps children and their families during the challenge that childhood cancer brings.

For the past five years, the foundation has sponsored Chemo Ducks for about eight hospitals in the New York region. 

“When our daughter was sick, we did not have something like Chemo Duck,” said Matthew Weippert, founder of the foundation. “We were so intrigued by the application of the program. We fell in love with how patients connected to it and how well it taught and explained treatment procedures to them. We love how children can personalize it too.”

For Sipos the foundation’s commitment to distribute chemo ducks is not the only reason she admires the organization.

“They also advocate for bereaved parents,” said Sipos. “I feel so strongly about that part of their mission. There are just so many pieces of the puzzle when dealing with families living with childhood cancer. This is a journey with many layers and I am happy to be associated with them.”

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.”

Bonding with Chemo Duck

Christine Steiner knew something wasn’t right with her youngest child, Olivia. After a month of viral illness diagnoses she demanded blood tests.

The result was ALL – acute lymphoblastic leukemia, also known as acute lymphocytic or lymphoid leukemia. The date, June 15, 2015 is etched in her memory.

“It was the day after Liv turned two years old,” said Christine. “I knew something was definitely wrong after a month of her being sick. She has been the easiest baby since the day she was born. She was not herself at all.”

“We were immediately sent to Boston Children’s Hospital to start treatment.”

Christine recalls the first two weeks of Olivia’s hospitalization as tough. An infection nearly sent the toddler to the Intensive Care Unit.

“One of our nurses brought in this yellow duck in hopes of getting Liv to smile,” said Christine. “It worked!”

“They gave her a Chemo Duck right before she had her port placed and it was so helpful because they were able to show her how they were going to give her the medicines and what they were going to do,” continued Christine .

“She really liked the idea that they were showing her how they use the lines, and she absolutely loved the idea of giving medicines to Duckie. It took her mind off of what they were doing. It served as a wonderful distraction.”

Duckie was not only helpful to Olivia, but also useful for her older siblings ages nine, eight and six years old. Christine taught them about the port that was inserted under Olivia’s skin and how doctors give her the life-saving medicine to treat her cancer.

“Chemo Duck has helped our entire family and comforts Liv when her port is being accessed.”

Liv and a fellow cancer patient often play with their Chemo Ducks together while at the Jimmy Fund Clinic at the Dana Farber Cancer Institute.

“They have bonded over their ducks,” said Christine. “It’s terrible when a family is put in this position, but anything that can help your child feel better is amazing.”

“I hope the Chemo Duck creators, Lu and Gabe, know the impact this has on patients. We are so thankful.”