Cuddly Friend for Cora

Posted on May 11, 2016 by trio_admin

In February 2016, after a long battle for a diagnosis, the Cornell family finally got their answer. Their two-year-old daughter, Cora had Metachromatic Leukodystrophy (MLD), a rare and normally fatal disease.

The only established treatment for MLD is a stem cell transplant and clinical trials that will help improve the results of those transplants. As their only viable option, the Cornells enrolled Cora in a phase 1 clinical trial at Duke University.

Shortly after Cora woke up from a pre-transplant surgery, which included the placement of her central line and an appendectomy as well as other procedures, one of Duke’s Child Life Specialists gave Cora a Chemo Duck. Confused and in pain, she grabbed Chemo Duck, snuggling him tightly.

It was in that moment that Cora and Chemo Duck became friends for life.

“We’d never heard of Chemo Duck before,” said Cora’s mother, Sarah. “But we are so grateful that Duke’s Child Life Specialists know how important Chemo Duck can be.”

Cora spent the whole next day happily playing the doctor to Chemo Duck’s patient. She pretended to remove his appendix with scissors and place his chest tube. Since then, Cora’s Chemo Duck doctor play has consistently been the best way she has to make sense of what’s happening to her and to exert some small measure of control over her life.

“Whenever Cora is having a tough time, Chemo Duck helps her through it. Because we’re in a transplant unit, we don’t have a lot of space and cleanliness is of the utmost importance,” said Sarah. “I love that Chemo Duck provides both medical play and a cuddly friend, and stands up well to machine washing. We highly recommend Chemo Duck for every toddler undergoing chemotherapy.”

Comfort and Companionship for Carter

Posted on March 15, 2016 by trio_admin

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

Posted on March 15, 2016 by trio_admin

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.”

Banding Together with Headbands for Hope

Posted on January 15, 2016 by trio_admin

For the entire month of January, Chemo Duck will receive a portion of the proceeds from sales from The Hope Market – an online shopping site featuring accessories like necklaces, headbands, hair ties and shirts.

The market is a part of Headbands of Hope, founded by Jessica Ekstrom in 2012.

It was during a college internship that Ekstrom noticed a need for providing headbands to children undergoing cancer treatments.

“I had noticed that girls who lost their hair to chemotherapy loved to wear headbands,” said Ekstrom. “Since that was a need that hadn’t been fulfilled yet, I wanted to create a solution.”

For every item purchased from Headbands of Hope, a headband is donated to a child with cancer and $1 is donated to a childhood cancer organization of the customer’s choice.

As word of the company spread, so did Ekstrom’s interest in helping pediatric cancer patients on a larger scale.

“Going to hospitals to donate headbands has given us a lot of insight to the needs of the facilities and the families of kids with cancer,” she said. “The Hope Market is our way to fulfill those various needs.

“We want to assist any organization that we feel is either working towards a cure or helping enhance the lives of kids while going through treatment.”

Chemo Duck was an easy fit for the company’s charitable giving focus, she said.

“We immediately fell in love with Chemo Duck because it serves as a point of education for the child, but it also makes the experience lighter and easier with a cute stuffed animal,” said Ekstrom. “We see first-hand how scary it can be for a child to go into a hospital. Even scarier is the fear of treatment and what it’s like.”

Headbands of Hope is not just for girls. A boys line of buffs has been a huge hit, she said adding that the newest accessory allowed the company to cater to all childhood cancer patients.

“In June we celebrated donating head accessories to every single hospital in the U.S. We have also made donations to Canada, Spain, Mexico and Peru.”

For more information about how you can help support pediatric cancer patients and Chemo Duck in January to go www.headbandsofhope.com

Raymeer’s Cancer Journey

Posted on December 15, 2015 by trio_admin

Raymeer Bacon-El is 10 months old. He is currently undergoing treatment for unidentifiable soft tissue sarcoma at the Children’s Hospital in Philadelphia.

When he gets old enough, his mother, Torey Williams, wants to explain his cancer journey to him.

Thankfully she has an excellent resource – a bright yellow, hospital scrubs and bandana-wearing stuffed animal called Chemo Duck. Each duck has a catheter sewn into its chest to resemble the line that is central to a chemotherapy patient’s treatment.

Patients, families and health care providers across the globe use the duck as an educational tool while going through the routine therapies associated with cancer treatments.

This is no exception.

“I have shown him his duck and pointed to his broviac and then to the duck’s to show him that they both have the same thing,” said Torey. “He may be too young to understand but that’s OK. I really want to be able to explain to him when he begins asking me about why he has these scars or just about his life in general.

“It’s very important to me to be able to share this with him. I’m so happy that I can use Chemo Duck to show him,” she said. “This is going to be a great teaching tool for when the time comes.”

Raymeer is expected to complete his chemotherapy treatments by the end of the year, his mother said.

When he is done, she will pack Chemo Duck in a special bin that houses other mementos from his 8-month treatment regime.

“One day I was typing the word chemo into my phone and chemo duck popped up,” said Torey. “I was thinking of ways to explain what happened to him once he gets older. It is perfect because I think having a visual example will be a great way for him to process all the information.”

Sing Me a Story

Posted on November 15, 2015 by trio_admin

David Treadway, AKA Mississippi Dave, is an independent song writer with an eclectic folk/alternative style.

David Treadway

Gabe Sipos is a 13-year-old cancer survivor with a story to tell.

The two were recently “connected” through a nonprofit organization called Sing Me a Story – a network of more than 1,500 songwriters who create songs based on the ideas obtained from stories or illustrations submitted by children from all over the world.

During one of the workshops held at Gilda’s Club Nashville, Gabe had the opportunity to write a story about himself and Chemo Duck.

“I was really scared at the hospital until one day my mom had an idea,” reads Gabe’s story titled ‘And That’s My Life’. “She put a duck plushie in hospital scrubs and put a port on it and she gave it to me. It allowed my fears to go away…”

Gilda’s Club submitted the story to the online group, which in turn distributes them on its website. Volunteer songwriters choose a story and then record and upload a song onto the website.

Since 2011, Sing Me A Story has transformed children’s stories into songs as a fundraiser for almost 50 partnering organizations like Gilda’s and Alive Hospice. Donors are able to go to the website, select a song from the collection, make a contribution and receive a copy of the chosen song.

Each child receives a copy of his or her song as well.

“Sing Me A Story is just a wonderful idea,” said Treadway. “It is a great opportunity for songwriters to use their powers for good. But most of all it’s a chance for kids to use their creativity and express things that matter to them as a way to heal or grow in some way.

Treadway spent a few days brainstorming ideas for Gabe’s song wanting to ensure that it was hopeful and encouraging.

“Gabe and all kids who go through these kinds of battles deserve some serious credit for what they go through,” explains Treadway. “Working with Gabe’s story impacted me because it challenged me as a songwriter to stretch beyond what I’d usually tackle topic-wise.”

David said the project was fun and is looking forward to participating in another story to song venture soon.

Lyrics from The Chemo Duck:

Whenever I’m scared and feeling down

There is no problem too big I’ve found

When the weight of the world is heavy on my back

I will raise my voice and let out a quack

Cause I’ve got a secret weapon when I am feeling stuck

And I’m never gonna let them tell me to give up

I found myself a best friend with feathers made of plush

Don’t let that fool you cause

He’s as tough as a stuffed duck comes – my friend, my friend the chemo duck.

A Pathway for Parents, from Parents: Part V

Posted on October 15, 2015 by trio_admin

We will continue to discuss the different chapters from our digital Parent-to-Parent Guide. This month we are featuring the Financial Plan.

Coping and understanding your child’s cancer and treatment plans can be stressful in itself. Most caregivers are forced to stop working in order to care for their child. Throwing the financial jumble into the mix is another challenging hardship that families face. So, what can you do to ease financial stress?

The first people you should speak with is someone from the hospital support staff such as a social worker. A social worker can be helpful in helping your family make financial changes because he or she usually knows of any funds that can help ease the financial burden, as well as apply for government assistance your family qualifies for. If you are a member of a church or temple, they may be willing to help set up a fund for out-of-pocket medical expenses. It can also help to decide what household expenses are necessities and which are luxuries. For example—expanded cable packages, wireless telephone bills, eating out, etc.

Monetary donations made to your family are considered gifts and are not taxable. In order to deduct your child’s medical expenses, the cost must be more than 7½% of your income for the year. (Given that tax laws remain the same.) Keep all of your receipts- gas, food, prescriptions, travel mileage and lodging. It’s smart to hire a tax preparer to assist you with your taxes the year of your child’s treatment. A licensed professional will be able to optimize your tax deductions.

It’s no surprise that hospital and doctor bills can become extremely confusing during your child’s treatment. It can be helpful to call the hospital billing department once a month to update your bills and combine them when possible. It’s important to remember that physicians charge separately from the hospital, make sure to take care of both sets of bills.

Remember that it takes a few months to adjust financially to having a child with cancer. Hopefully this financial plan can assist with guiding your family through this journey.

Bonding with Chemo Duck

Posted on October 15, 2015 by trio_admin

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.”

Duck Derby’s Record-Breaking Success

Posted on August 15, 2015 by trio_admin

The third annual Duck Derby was a monumental success! Although it was an incredibly hot day in Nashville, the park experienced record-breaking crowds. Prior to the race we sold 1,200 ducks and during the race, we sold another 300 ducks! Our grand total of 1,500 ducks sold was the biggest number to date. The event raised enough to supply 300 children with Chemo Ducks.

Riley Bria was an incredible addition to this year’s event. He played songs from his upcoming album and “wowed” the crowd with his talent.

The six-foot rubber duck was also a huge hit along with visits from the Chemo Duck mascot and Freckles the Frog. The children were thrilled to say the least!

We were honored to partner with Nashville Shores on this fun family event. We are also extremely grateful for our growing number of sponsors including Jackson National Life Insurance, B.L. Harbert, StoneTree Mulch Gravel and More, Williamson Pediatric Dentistry, AMP&M Specialties, Crain Construction, Doster Construction and Nashville Publicity Group.

Check out our two Facebook albums for some amazing pictures!