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.