Kayleigh finds comfort in cuddy companion

When she was just three and a half years old, Kayleigh was diagnosed with neuroblastoma. It was a Thursday, and her mom Valerie Hale remembers every single moment of it.

“I felt so helpless. I started crying so hard I couldn’t even hardly see,” said Valerie. “I sat down beside Kayleigh and she just looked at me and said, ‘Mommy, why are you crying? It’ll be okay. Hold my hand, mommy.’ She didn’t even know what was going on. She was just trying to comfort me.”

When Kayleigh was first admitted on August 4, 2009, there weren’t any available rooms on the hospital’s oncology floor, so she was admitted to the cardiology floor. It wasn’t until the next day that she finally got a room on the oncology floor.

As soon as she got into her room, there was a Chemo Duck waiting on the bed for her.

“We didn’t realize it at the time just how important and special he would become,” explained Valerie. “In the early days, he was always by her side for the majority of her journey. But as time went on, and even today, as she is nearing her teens, he goes with her everywhere. He is her comfort and her peace of mind. He is her best friend.”

While Kayleigh found comfort in her Chemo Duck, Valerie found comfort in her family and other families within the childhood cancer community.

“The most beneficial thing for us during this time was just being together as a family,” said Valerie. “For parents going through this, I’d recommend finding support groups. They help.”  

Today, Kayleigh is almost nine years cancer-free. This November, she will be eight years out of treatment. She still has her original Chemo Duck from nine years ago, as well as a newer duck and a Chemo duckling.

“She loves them all, of course,” said Valerie. “But the others don’t even come close to comparing to her love for her original ducky. I don’t think she will ever let him go.”

Kayleigh has a lot of lasting effects from chemo, radiation and other treatments. She lost a good bit of her hearing and now has a hearing aid on one side and a cochlear implant/hearing aid hybrid on the other. She has also had problems growing and gaining weight.

“Her bones are more fragile now and more prone to breaks or small fractures, too,” explained Valerie. “She is being followed in GI, Endocrinology, Nephrology, sees her survivor clinic once a year, Audiology and ENT as well as Neurology and Mental Health. They all keep pretty close tabs on her to make sure she is where she should be and has everything she needs.”

However, despite her struggles at such a young age, Kayleigh takes it all in stride and very rarely complains. She is doing well in school — all A’s and B’s! — and is friends with everyone in her grade.

In fact, Kayleigh is a very spunky girl. She’s bright and can put a smile on anyone’s face. An artist at heart, Kayleigh loves art, music (more specifically: Twenty-One Pilots) and animals. She has a bearded dragon named Zilla and a chihuahua named Sammy. Known for her big heart, Kayleigh truly cares about people.

Everyone with Gabe’s Chemo Duck Program is so glad to hear that Kayleigh is doing well and that her Chemo Duck is still by her side every step of the way. We cannot wait to see where Kayleigh’s loving, artistic spirit will take her next. The sky is the limit for this sweet, spunky girl!

Meet Bailey and her cuddly companion, Quack Quack

On May 3, 2018, Bailey was diagnosed with acute lymphoblastic leukemia. After taking her to a local urgent care as well as a county hospital to try to find answers for unexplained bruising and the onset of what appeared to be a rash, Bailey’s parents were given the new no parent expects to hear.

At just two years and four months old, Bailey began her cancer journey at the Cincinnati Children’s Medical Center.

“The child life specialists would give Bailey toys to play with to help make her more comfortable, but she would typically get bored after a while,” said Bailey’s mom, Lyndsay. “When they suggested getting her a Chemo Duck after she had a port placed, Bailey was super excited to meet him and hasn’t grown bored of him since!”

Appropriately named Quack Quack, Bailey’s Chemo Duck has been by her side every single day.

“She loves to show people that he has a ‘bump’ just like her. She loves that she can practice on him and show him what the doctors are doing to her,” explained Lyndsay. “I love that she can understand what the doctors are planning and that she has a buddy going through the same thing as her. I think it makes her feel a lot safer and much more comfortable.”

Although she is currently undergoing chemotherapy every other week at the hospital and oral chemotherapy every night at home, Bailey discovered after a bone marrow procedure on June 4 that there are no more active cancer cells in her system.

Known as a happy girl with a bubbly spirit and an adventurous, talkative and playful personality, Bailey’s spirit continues to shine through every day.

“She’s extremely smart and will strike up a conversation with anyone willing to talk,” said Lyndsay. “She loves Paw Patrol, swimming and playing hide-and-seek. She also enjoys nature walks and trips to the zoo!”

Lyndsay is extremely thankful for the support of her family and her community during Bailey’s cancer journey. They have even helped raise money through fundraisers and benefits to help fund Bailey’s treatment.

“We are absolutely blessed to have such caring people surrounding us.”

Additionally, Lyndsay could not be more thankful for the special care Bailey received at the Cincinnati Children’s Medical Center.

“Cincinnati Children’s is an AMAZING facility that I am very confident in. I am so appreciative of the care we have received from everyone there.”

As a mother who has a child undergoing cancer treatment, Lyndsay had some wonderful words of encouragement to share with other parents who have found themselves in this same situation.

“You are not alone! You did nothing to cause this and you are an amazing parent. Going through this journey with your child will allow you to form a bond that no one could understand and no one could break. Sleepless nights holding your child who doesn’t understand is absolutely heartbreaking, but you are not alone, and I am praying for you!”

Thank you to Lyndsay and Bailey for sharing your story with us. We are all rooting for you!

Join Rob’s Memorial Flock

For those who may not have heard, Gabe and I lost his father, my husband, Rob, earlier this year to cancer.

Rob was a true pillar in our family and a passionate supporter of Chemo Duck — he was our loudest cheerleader and our greatest partner in this journey.

To honor his memory, we have created “Rob’s Memorial Flock,” a fundraiser that will demonstrate just how many people’s lives Rob has impacted and will continue to impact, as his legacy lives on.

Our hope is that by joining this special initiative to get more Chemo Ducks in the arms of some very special kids, you will also help us make Rob’s memory synonymous with the love and hope that our organization is so passionate about sharing.

We invite you to be a part of Rob’s Memorial Flock and help us raise $3,000 — the equivalent of 100 ducks — in honor of our beloved husband, father and friend. Even a small donation will still make a huge difference in helping us reach our goal.

We appreciate your support and know Rob would be proud to have each and every one of you as a member of his memorial flock!

Join the Flock

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:

A Pathway for Parents, from Parents: Part IV

This month we will continue to discuss the different chapters from our digital Parent-to-Parent Guide. Following the Support Plan featured in last month’s e-newsletter is the Home Plan.

Home life can be difficult to maintain and regulate after your child has been diagnosed. Having a home plan that you and your family can implement on a daily basis can make your life feel a little less complicated.

To start, it’s important to have a medical home plan. Keep useful phone numbers, your child’s latest blood counts and medication lists on hand for when you need them. This can make emergency calls less stressful when calling the hospital or doctor. We recommend you laminate the Emergency Numbers sheet attached to the end of the Home Plan PDF so you can write on and wipe off weekly blood counts.

Although it may seem impossible, try to keep life at home as regular as possible. Encourage your child to go to school and have play dates as long as they are well enough. This goes for siblings too.

It is an unfortunate reality of childhood cancer, but typically the entire family is affected. Try to keep their lives as normal as possible as well. Ask for help from friends and family to make sure that everyone can continue with their after school activities and sports. Try to make sure that everyone knows what the weekly schedule will be – children thrive on routine. Below are ways that siblings can live a somewhat normal life.

Team up: If you are a two-parent team, make sure that the same parent isn’t always at the hospital. It’s important that siblings spend time with you to minimize feelings of neglect.

Educate the family about basic cancer facts: When every family member is well educated about cancer and cancer treatment, talking about feelings can be easier. Feelings can be confusing for siblings and it’s more difficult for them to cope at times. Be sure to stress to everyone in your family that cancer is not contagious and that nobody caused your child to have cancer. Most importantly, explain that this is nobody’s fault.

Everyone needs a role: Give siblings a role in taking care of their sick brother or sister. Whether it’s being in charge of “cheering up” the unwell sibling or making cards during hospital days, it’s important that everyone feels they are needed have defined roles.

Catch your children doing something good: Recognize, acknowledge and thank your children when they make an effort to raise their sibling’s spirits. Celebrate small victories and occasions together as a family.

Talk about feelings: Encourage your children to express their feelings, even those of jealousy or resentment toward their sick brother or sister. Explain that although it is normal to experience those feelings, their actions toward the sick sibling need to be considerate and thoughtful. The more time adults take to understand the difficulties the children are facing, the better.

Another important aspect of an effective Home Plan is nutrition. It’s likely that your child’s appetite will change during treatment. Drastic changes in cravings and appetite are normal. Your doctor may encourage you to allow your child to eat whatever appeals them. “Most of all, try not to stress too much. If all they want to eat is Pringles or Cheetos, give it to them and remember that this too shall pass,” said Natalie, parent of a pediatric cancer patient. Try not to worry too much, if your child’s weight begins to drop slightly. Your doctor will suggest different options to supplement their diet. You can help your child by encouraging them to eat when they feel like it, and slipping calories into food when they don’t!

There are so many stressors for families after a child has been diagnosed. Hopefully these tips, your Chemo Duck companion and the Home Plan document will help as you navigate through this journey.

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.

A Pathway for Parents, from Parents

When you’ve found yourself in a situation that no parent or caregiver ever imagined themselves in, you may feel shocked and unable to fully comprehend the situation. The next steps to re-organizing your life may seem impossible. 

The next few monthly e-newsletters will feature different chapters from our digital Parent-to-Parent Guide.

This guide was created from a combination of experiences of many families who have faced childhood cancer. Each family has a different set of needs, emotions and circumstances. The document gives parents and caregivers the knowledge and insight into creating a pathway that best fits their personal situations.

“When we started working on the Parent-to-Parent Guide we wanted to have something that was created by many parents so that it wasn’t just one person’s opinions and experiences. The guide was a group effort,” said Lu Sipos, founder of Gabe’s Chemo Duck Program. “The goal was to create a document that would be as useful as possible to as many people as possible.”

The first three sections of the guide serve as a tool to help you digest and understand your child’s diagnosis and come to terms with your new ‘reality’. We hope you take time to digest these heartfelt notes from our own experience.

Following these sections is a Communication Plan. This plan provides insight that families can use as a guide to provide effective communication to family members and friends.

The communication plan provides information on multiple methods to communicate information and updates including phone calls, journaling, blogging and more.

Stay tuned to our monthly e-newsletters as we continue to explore the guide — and encourage others to sign up to our list who may benefit from this information!

Chemo Duck Celebrates 10 Years

Ten years ago, what started as a light-hearted way for one family to cope with the harsh introduction to cancer, has become an international educational tool for patients, families and health care providers.

Chemo Duck, the bright yellow, hospital scrubs and bandana-wearing stuffed animal, has come a long way since it made its first unofficial appearance in 2002.

Lu Sipos’ son, Gabe, was diagnosed in 2002 with rhabdomyosarcoma, a tumor of the muscles that is attached to the bones. For Gabe, the cancer was in the right side of his jaw and sinus passage.

“When I made Gabe’s duck, I was looking for a way to bring some comfort to my child,” said Sipos. “It was also a way to show a little humor for the nurses and doctors,” said Sipos. “I really thought it was a prop that would make them all laugh and then when we went home I’d put it away on a shelf. Fortunately, that is not what happened. The duck ended up becoming a source of comfort for my son as well as a valuable tool used to show Gabe what was going to happen to him during treatments.” 

In 2004, Sipos founded the non-profit called Gabe’s My Heart to mass produce Chemo Ducks.

“I never pushed Chemo Duck to grow,” said Sipos. “It grew on its own. It grew out of necessity. Others saw our duck and wanted one. And that led to my making a few and it just caught on.”

Little did Sipos know that the stuffed animal she sewed as an icebreaker during her son’s first visit to the pediatric oncology clinic at the Monroe Carell Jr Children’s Hospital at Vanderbilt would grow into the lovable, source of comfort her then nearly one-year-old son craddled throughout his cancer journey.

Chemo Duck has served as a therapeutic agent for newly diagnosed pediatric patients all across the globe. There have been 2,300 ducks produced.

Chemo Duck is much more than the stuffed animal. Each duck has a catheter sewn into its chest to resemble the line that is central to a chemotherapy patient’s treatment. The educational program comes with a video and two books. The website features cartoons, printable activities and a song. This fall, Sipos expects to launch a Chemo Duck app.

What makes celebrating the ten-year mark with Chemo Duck more special, says Sipos, is that Gabe is taking a very active role in the program that was initially created for him.

Recently, the 12-year-old received regional recognition through the Kohls Kids Care Scholarship for his volunteer work.

“I am really proud of his becoming more a part of the program,” said Sipos. “I feel so glad that he is getting recognized for the work that he is doing. The idea that he wants to be a part of this and wants to give back makes me proud as a parent.”

As a voting member of the board of directors for Gabe’s My Heart, Gabe has had several opportunities to interact with the public and explain the Chemo Duck program.

“He has taken a real interest in our events and especially working with the kids,” said Sipos. “That is an area where he excels. He is a natural when it comes to interacting with people.”

As Chemo Duck celebrates 10 years of providing necessary information for patients, families and practitioners, Sipos shares one of her dreams:

“Now, I want Chemo Duck to be to kids with cancer what Mickey Mouse is to all kids – something that creates a smile on a child’s face.”

As part of the anniversary celebration, Chemo Duck will host a birthday party at Children’s Hospital on August 6 at 2:30 p.m. at the stage. Fans are also invited to submit birthday greetings by posting a creative, fun or inspiring photo or video message to Chemo Duck’s Facebook page. Post between August 5 and August 10 at midnight. A winner will be announced on the Facebook page on August 13 (the actual 10th birthdate) and will receive a $100.00gift card to Amazon.com and have 10 Chemo Ducks donated to a hospital of their choice.

Chemo Duck Takes Safety Seriously

Gabe’s Chemo Duck Program is committed to ensuring that all Chemo Duck products are safe for kids to use. Our products are made in compliance with all U.S. product safety guidelines as published by the Consumer Product Safety Commission (CPSC). All of our toys are independently safety tested and safety reports are available.

Our Chemo Duck manufacturer is focused on product safety and compliance. All products are safe for suggested ages. Products are made from all new materials, nylex fabric, no lead content, polyester stuffing, plastic bean filling, and the inks used are non-toxic.

Throughout the entire manufacturing process of every single Chemo Duck, stringent safety measures are taken to ensure every child provided with huggable hope is protected from any safety issues.