Tag Archives: Chemotherapy

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!

Get to Know the MaxLove Project

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THE IMPORTANCE OF NUTRITION IN THE CANCER TREATMENT JOURNEY

What was one of the first things Justin Wilford thought about when his son, Max, was diagnosed with a brain tumor in 2011?

Not just any kind of food – a healing, nutritious cancer-fighting diet. 

“We had an immediate intuition that whatever we did from that day forward, we should include diet as a therapeutic tool for Max,” said Justin. “It took a while for us to find someone who saw the value of whole food and saw it as an anti-cancer therapy.”

“I did a whole lot of research and came across the ketogenic diet, which Max is on right now. What was most striking about the diet was that it was being researched on actual humans and it was proving to have some anti-tumor properties.”

Justin admits getting Max’s oncologist, Victoria Shen, M.D., at Children’s Hospital of Orange County in California, on board was another matter.

“Mainstream oncology does not recognize any diet to have an anti-cancer effect, so Max’s oncologist, Victoria Shen, M.D., was initially skeptical,” he said. “But after diving into the research with me and talking with doctors who administer the ketogenic diet for epilepsy , she became a big supporter.”

Justin said the hours of research, advocating for the diet and compiling his findings was worth it.

“We believe that the diet has kept Max’s tumor stable,” he said. “And we have heard from adult cancer patients using the diet that they have had common responses.”

Max, now 7, underwent 1.5 years of chemotherapy and 30 rounds of radiation. He is not on a formal treatment protocol right now other than the ketogenic diet.

The use of integrative therapies in combination with traditional therapeutic agents is gaining in popularity said Justin, who created the MaxLove Project in late 2011 to provide families with accessible, practical and kid-friendly whole body wellness resources.

The nonprofit organization aims to empower families fighting childhood cancer and life-threatening conditions.

“One of the most important therapies is nutrition, which plays an important role in the whole cancer treatment journey,” he said. “We believe that true health starts when families are empowered to be active partners in their child’s healing.

“It is great that our oncologist is supportive of the diet.”

Shen offers some helpful tips for parents who are interested in the role that integrative health and nutrition play in helping cancer patients combat adverse effects of cancer treatment as well as promote wellness of the mind and body.

“I would encourage the parents to discuss the use of complimentary and alternative medicine with their medical team since no one intervention fits for all,” said Shen.

Max is “an amazing boy” and has not been slowed by any of the treatments, she said.

“It is remarkable that Max continues to thrive and flourish,” said Shen. “I believe his nutrition and family support play an important role in his healing. His diet plan is very strict and demanding and should be guided and monitored closely by knowledgeable and experienced medical professionals.”

Introducing the First Mobile App from Chemo Duck – for Kids!

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Walk into most any pediatric healthcare setting and one thing is universal – patients are usually glued to some kind of electronic device.

Twelve-year-old Gabe Sipos, the son of Chemo Duck’s founder, is no different. 

Except now, 10 years after spending countless hours in clinics and the hospital during his treatment of rhabdosarcoma, he had an idea.

Chemo Duck has recently launched a series of free, entertaining and educational games and activities for kids fighting cancer around the world. The app is available on iTunes for use on all Apple phones and/or devices.

“It’s been a while since we sat down and really thought about what this was going to look like,” said Gabe. “I sort of knew what types of games I thought kids would like and how I wanted the whole thing to look.”

Talk Like a Duck, Exercise Wheel, Touch and Learn, Call from Chemo Duck, Hospital Bingo and Mix and Match are all interactive activities geared toward keeping kids engaged while providing teaching opportunities.

“It was such a fun experience coming up with all the different ideas and aspects for the games,” said Gabe. “I really like the idea that in order to move ahead in the games, you have to earn a coin to unlock the next level.

“It makes you want to keep playing,” he said. “I do think kids will like it. I know I would’ve liked to have had something like that when I was younger. They are definitely fun and challenging.”

Phil Earnest, the app designer said he was impressed with Gabe’s vision for the apps.

“One of the coolest things about this project was hearing from Gabe what he wanted and working with him on the different elements,” said Earnest. “It was neat knowing that his dream was becoming a reality, that what he envisioned was coming to life. It was a great feeling to be a part of that.”

The app, Chemo Duck’s first, is an additional way for the nonprofit to impact the lives of pediatric cancer patients. In researching for the project, Lu Sipos said the market was ripe for a product.

“I searched for an app to both entertain and educate kids living with cancer but couldn’t find one,” said Sipos. “When I mentioned this to Gabe, his face lit up. He was thrilled to develop one.

“He has really found his place within the foundation. He has a way to give back,” she said.

“Helping others is a simple way to bring us fulfillment. But seeing Gabe’s passion about this…it’s the start of a next chapter for Chemo Duck.”

To download the app go to apple.com/itunes and search for “chemo duck” or click here to go directly to the Apple Store.

Read full press release on PRWeb.

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.