Tag Archives: cancer

A Pathway for Parents, from Parents: Part III

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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

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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.

A Pathway for Parents, from Parents: Part II

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As promised, we are continuing to explore different chapters from our digital Parent-to-Parent Guide. Following the Communication Plan featured in last month’s e-newsletter is the Education Plan.

When educating yourself about your child’s cancer, it can be tempting to search the internet for hours on end, trying to gather every piece of information possible. It’s important to remember that the Internet can often be misleading and unreliable.

“I utilized the Internet a lot to find information but would caution parents to be careful to filter what they read. Being a nurse, I was able to do that some, but still found some information to be not entirely accurate and certainly not helpful in terms of trying to find answers for Lauren’s diagnosis,” said Tammy.

Doctors will usually provide a packet of basic information along with your child’s treatment plan. If you want to find more information about your child’s illness, ask your doctor about the websites he or she recommends. This will ensure the information you find is reliable and correct.

If there is any information that you have trouble understanding, ask questions. It’s extremely important to understand your child’s cancer and your doctor and support staff is there to answer any of your questions.

Educating your children the correct way is crucial. This is the cornerstone to helping your child through their cancer journey. Child life staff and psychologists are well-trained professionals who can help you express to your child what to expect from his or her cancer treatment. With resources such as books, toys and DVDs, your child can learn about specific cancer issues appropriately.

“As you know we were very honest with Sarah, and didn’t keep any of the “facts” from her. With the help of the child life specialists, we explained things on her level as they came. It helps to take it a piece at a time as it comes. You have to be truthful so that they will trust you,” said Dianne.

Chemo Duck is a great instrument for educating children on their own level. The following are steps outlined in the Education Plan:

  • Talk to the child life specialists
  • Take it a piece at a time from the beginning
  • Keep it age appropriate
  • Tell the truth or be as honest as you can
  • Use all of the resources available

It’s important to talk to hospital support staff about contacting your child’s school. They can assist you with paperwork to set up and develop an education plan that is specific to your child’s needs. Your child life specialist should be able to provide useful information and guidebooks for educating children with cancer.

A Pathway for Parents, from Parents

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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!

Courage Kits Offer (Huggable) Hope for Siblings

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Ten-year-old Alexia had been worried about her baby sister Ayla as the one-year-old endured cancer treatments. When Alexia received a special Sibling Courage Kit from the Cooper Trooper Foundation, it was “a nice surprise that she got something for herself,” says her mom, Dana Ochoa.

Inside Alexia’s Courage Kit was a Huggable Hope that matched her sister’s Chemo Duck. “Most of our attention has shifted to Ayla, so we worried that Alexia feels left out sometimes,” says Dana. The Courage Kit helped her feel included. “Such a sweet thing, and it was comforting for her to know she was involved,” says Dana. “Alexia sleeps with her Hope duck every night.” 

As part of a new partnership between Gabe’s Chemo Duck and Cooper Trooper Foundation, Huggable Hope ducks are now included in the Courage Kits distributed to siblings of children diagnosed with cancer at Monroe Carell Jr. Children’s Hospital at Vanderbilt (MCJCHV). Courage Kits are also available by request online.

“Huggable Hope ducks are a great addition to our Courage Kits,” says Missy Cook, who founded the Cooper Trooper Foundation with her husband, Rod, after their youngest son, Cooper, was diagnosed with a rare type of cancer and they recognized a huge need for hospital-based sibling resources for parents.

“Children diagnosed with cancer receive a Chemo Duck to bring them comfort and provide education on their new diagnosis, so it only makes sense to give siblings, who often feel left out yet are fighting alongside their brother or sister, their own similar companion duck.”

Alexia and Ayla love their special ducks in special ways, says mom Dana. Knowing that “Gabe” has a matching port makes all the difference for Ayla. “The port is a big part of the chemo journey, so it’s neat for her to see it on Gabe. She’s not the only one—Gabe has a port, too! And Alexia likes that her Hope duck matches her sister’s. It’s so cute to see them side-by-side with their ducks!”

Courage Kits also include a tee-shirt, courage medal, journal/pen, personalized certificate, a book for siblings of children diagnosed with a chronic illness and more.

Both Gabe’s and Cooper Trooper are the result of families personally touched by childhood cancer. “We realize how devastating it can be,” says Cook.

Providing support for the entire family is Cooper Trooper’s mission, and Gabe’s My Heart aligns perfectly with that. “We’re helping to provide support, education and encouragement to families whose worlds have been turned upside down by childhood cancer. We want siblings to know they’re not forgotten.”

“Watching her sister go through this, it’s scary for Alexia,” says Dana. “It’s a very stressful time.” The girls’ father, Joel, is about to deploy to Afghanistan. “Hope will be there to give Alexia someone to hug when her daddy’s not here,” says Dana. “She’ll give her courage.”

Purchase a Huggabe Hope for someone you love today!

Saving Live’s is on Abigail’s Radar

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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.

Vanderbilt Celebrates 10 years of Chemo Duck

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Chemo Duck turns 10

For ten years Chemo Duck has helped thousands of children treated for cancer across the globe.

Organizers of Chemo Duck held a birthday party to mark the milestone with nearly 50 party goers at the hospital where he was born – the Monroe Carell Jr Children’s Hospital at Vanderbilt.

Each guest enjoyed cake and cookies from Cakes Against Cancer for Kids, decorated rubber ducks and Chemo Duck bandanas.

Lu Sipos, the founder of Chemo Duck, said the plush toy is more than a stuffed animal – it is an educational intervention that serves as a therapeutic tool to help children better understand the various treatments they will experience while undergoing therapy.

Chemo Duck turns 10

Chemo Duck turns 10“Over the past decade there have been many changes to Chemo Duck,” said Sipos. “The program has grown into far more than just a stuffed duck. We have come up with a variety of resources, games, videos and other educational tools to help kids cope with cancer.

“He gives parents a view into their child’s mind and he gives children a way to express themselves. Our focus has always been to guide families through that initial, brutal first few weeks and then provide them with much-needed comfort and companionship.”

Chemo Duck turns 10Vanderbilt Children’s Hospital is where Chemo Duck held its first launch party which made it very fitting to mark a decade of service at the very same place, smiled Sipos.

“I am so thankful for Vanderbilt and the support shown to us over the years,” said Sipos. “It all started right here and look at where we are now.”

Chemo Duck turns 10

As part of the birthday celebration, Chemo Duck donated six rainbow loom kits – one of the hottest crafting projects on the market – to the hospital. The kit consists of two plastic template boards, a hook, 24 plastic clips and 600 multicolored mini rubber bands – typically used to make friendship bracelets, rings and more.

Chemo Duck Celebrates 10 Years

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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.

Affiliate Hospital: El Paso Children’s Hospital

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There is no better way to share the impact Chemo Duck has on children battling cancer than through a testimonial video from a reputable children’s hospital. We are thankful for the partnership with the Children’s Miracle Network and El Paso Children’s Hospital for telling this story.

We invite you to watch Child Life Specialist Abigail Null explain how our therapeutic tools are comforting hundreds of children in El Paso.

Sarah’s Six Funds a Flock

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Sarah Bonnell, at age 7, and Gabe Sipos, then age 1, had chemotherapy in the same clinic at Vanderbilt Children’s Hospital every week for nearly a year. The two small children bonded, as they shared the same rare cancer, rhabdomyosarcoma.

“We knew the original Chemo Duck,” says Sarah’s mom, Diane.

Now 18, Sarah graduated from high school last month in the top ten in her class. She remembers those difficult days in the hospital with clarity. “I thought Gabe’s duck was amazing,” she says. Though her own stuffed toy, a special bear, comforted her during treatments, “I admired Gabe’s duck’s little port and his blood pressure cuffs,” she recalls. “I kind of understood what was happening in the hospital, but Gabe was so young, he had no comprehension about it all. His special duck helped make it seem less threatening, less scary.” 

Sarah and her family wanted to share that comfort with other kids going through a similar experience. Together with Lu Sipos, creator of Gabe’s Chemo Duck program™, they created “Sarah’s Six.” Each month, the family funds six Chemo Ducks for delivery to children at three U.S. hospitals.

“We’ve always been inspired and humbled by Lu’s work,” says Diane. “We’ve watched in awe as she’s built and devoted her life to her foundation, and though we’ve made contributions from time to time, we decided we wanted to make a commitment to do more directed giving.

“It’s a way for us to pay forward everything that was done for Sarah and the people that impacted our lives along the way,” she says. “It’s not a lot—it’s a small contribution, but we’re so honored to be a part of this organization.”

Sarah chose Vanderbilt Children’s Hospital to receive the first round of Sarah’s Six Chemo Ducks, in honor of the life-saving care she received there. Thereafter, a monthly contest sponsored by Gabe’s My Heart will invite supporters and fans to designate three hospitals to receive Sarah’s Six each month (plus all other single duck orders place that month).

“We believe God took a small piece of heaven and sat it down in the place where Vanderbilt Children’s Hospital stands,” says Diane. “When Gabe and his family and Sarah and our family were all there together, it was one small area on the fifth floor of the old children’s section. They took such good care of us. I could give you a story about each one of the doctors, nurses and staff.” Even when Sarah relapsed, she says, “they were always in our corner. Ten years later, they still are.”

“First Gabe and I had chemo together, and now to be able to team up with his organization and try to make a difference for kids, it’s amazing,” says Sarah. “It’s an honor.”

She’s grateful to be a part of helping kids better understand and gain some comfort during their treatment. “The Chemo Ducks help make cancer treatments a better experience,” she notes. “It’s awful either way, but Chemo Duck helps make it more kid-friendly, helps take a little bit of the edge off.”

“Being there from the beginning, seeing Gabe’s duck program grow and expand to 150 hospitals is awesome,” she says. “We’re honored to team with this really successful organization that reaches multiple kids.”

You can create your own personalized form of directed giving like the Bonnell family did with Sarah’s Six. To learn more, please email us at info@chemoduck.org.