Gabe Goes to England

Posted on July 15, 2016 by trio_admin

It has been an incredible month for all of us at Chemo Duck.

Gabe’s mom, Lu, is from Yorkshire in Great Britain and this past month, Gabe was able to fly overseas to meet his English relatives. But this wasn’t just a normal visit —Gabe was going overseas to see some very important people and places that remain near and dear to Chemo Duck and its mission.

The first stop on their trip? A visit with the Phillips family. Lu and Andrew Phillips have been working together closely for years. Andrew’s son, Harry, just finished his own cancer treatment journey and Andrew had originally reached out to Chemo Duck for support.

What began as a simple request for help has transformed into a lifelong friendship. Not only that, Andrew was so impressed with Chemo Duck that he decided to help store and share Chemo Ducks within the U.K.

This venture became so popular that Andrew decided to created the ‘Give a Duck U.K.’ program, which helps raise funds to deliver Chemo Ducks to children in the U.K.

After a quick catch-up session, Gabe and the Phillips family then made their way over to Leeds Children’s Hospital, which has embraced Chemo Duck as a teaching tool. This was the first hospital in the U.K. to introduce Chemo Ducks onto the wards and these were generously funded and imported by Candlelighters, Yorkshire’s children’s cancer charity.

Candlelighters have worked with the Phillips family for several years. Originally the family stepped in to simplify the shipping process. This was promptly followed up with a huge fundraising campaign to fund the Candlelighters program, which has raised almost £100,000 so far for the charity.

Gabe visited the Clarendon Wing and met with children who are currently undergoing cancer treatment and whose lives have been touched by Chemo Duck. For example, the Leeds team has even introduced specially made outfits for their Chemo Ducks, which are handmade by a volunteer group at the Rivers Meet Café, and children can choose a new one every month.

The hospital also happened to be where Gabe’s Gran received her cancer treatment, and his aunt is currently being treated, so this visit was very meaningful on several levels!

Seeing how readily hospitals in the U.K. are embracing Chemo Duck has inspired Gabe, Lu and the rest of the Chemo Duck team to bring some of these ideas back to hospitals in the U.S.

Watch an overview of Gabe’s trip to the U.K.

Chemo Duck Shares More Love

Posted on May 11, 2016 by trio_admin

There was so much love for some of our local nonprofits that it’s spilling over into another newsletter!

Gilda’s Club Nashville and Dreams and Wishes of Tennessee have been longtime friends of Chemo Duck and we want to share the great things each group is doing for children with cancer.

Gilda’s Club is an affiliate of the Cancer Support Community and is dedicated to providing support, education and hope to all people impacted by cancer. All of the programs offered at the clubhouse are free of charge including support groups, healthy lifestyle workshops, mind-body classes, social activities, educational lectures and community resource information.

Felice Apolinsky, LCSW, program director at the Nashville Gilda’s, said the mission of Chemo Duck and Gilda’s is very closely aligned.

“Chemo Duck is a remarkable educational and emotionally supportive tool,” said Apolinsky. “Not just for the child, but for the parents of the diagnosed child, for their siblings and their friends. It’s a conversation starter, a non-threatening way to talk about difficult topics…improve communication and help make something that is really terrifying – cancer – less terrifying.

“We too focus on education, support, empowerment and building community. Knowledge creates empowerment, and empowerment creates confidence and comfort.”

The Sipos’ have been participants at Gilda’s Club Nashville for more than a decade.

“I owe a great deal to Gilda’s Club both professionally and personally,” said Sipos. “Chemo Duck has partnered with Gilda’s Club for many years to provide emotional support for children living with cancer. We could not imagine working with a more amazing organization.”

Chemo Duck has served as an inspiration for the founder of Dreams and Wishes of Tennessee, Tanya Sturm.

The organization grants wishes to individuals between the ages of 5–21 who have relapsed from cancer. It also assists with granting wishes to young adults with life threatening illnesses who have never received a wish from other wish granting groups.

“Over the years I have become close to Lu and Gabe,” said Sturm. “I actually still have one of the original Chemo Ducks in my office. Lu has been an inspiration to me.

“I love Chemo Duck and all that it stands for. It’s a fabulous nonprofit and they have helped so many kids.”

Sipos seconds Sturm’s sentiments for Dreams and Wishes.

“Tonya is a huge inspiration to me,” said Sipos. “She is incredibly dedicated to helping children achieve their wishes, and her love for those children is so tangible! It is truly inspiring to watch Dreams and Wishes grow.”

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.”

Talking to Your Child – Medical Expressions

Posted on November 15, 2015 by trio_admin

Words have different meanings and can be confusing to a young child. It is likely that your child will hear standard medical expressions but not understand the meaning. Consider using child-friendly explanations when communicating with your child about their medical care. To ensure they are not misunderstood and that your child isn’t confused, here is some suggested language. Ideally, children should be asked if they know what the doctors or nurses mean when they say these words.

Medical expression: “The doctor will give you some ‘dye’.”
Your child may hear: “This is going to make me die?”
Suggested language: “The doctor will put medicine in the tube to be able to see your _____ more clearly.

Medical expression: “Shot”
Your child may hear: “Are they mad at me? When people get shot, they are badly hurt. Are they trying to hurt me?”
Suggested language: Instead of “shot,” refer to this as giving medicine through a small, tiny needle.

Medical expression: “CAT scan”
Your child may hear: “Will the be cats? Or something that scratches?”
Suggested language: Describe a CAT scan in simple terms such as “a machine that lets us see the inside of your body,” and explain what the acronym stands for.

Medical expression: “IV”
Your child may hear: “Ivy?”
Suggested language: Explain to your child that an IV is a tiny tube or straw that goes into their vein (hand) that gives their body water or it’s a fast way to give your child medicine.

Medical expression: “We’re going to take a picture.” X-rays, CT and MRI machines are for larger than a familiar camera, move differently and don’t yield a familiar end product.
Your child may feel like this: “I don’t feel like smiling.”
Suggested language: “These are machines that we use to take a picture of the inside of your body.” Describe the appearance, sound and movement of the equipment your child to help address any fears.

Medical expression: “We’re going to put you to sleep.”
Your child may hear: “Like my cat was put to sleep? It never came back.”
Suggested language: Explain that the medicine your child will be given will help them go into a very deep sleep. Explain that they won’t feel anything until the operation is over, and then the doctor will stop giving them the medicine so they can wake up.

Medical expression: “Take your vital signs.”
Child-friendly explanation: “We are going to measure your temperature and see how warm your body is.” Or, “We are going to see how fast and strong your heart is working.”

Medical expression: “Anesthesia”
Child-friendly explanation: Explain to your child that the doctor will give him or her medicine called ‘anesthesia’ and that it will help them sleep during their operation or procedure.

Medical expression: “Say goodbye to your parents.”
Child-friendly explanation: If you hear someone say this to your child, explain to your child that he or she doesn’t have to say goodbye but rather “see you later.” Explain to your child that you will see them in just a little while.

Hard or harsh term: “This will hurt.”
Child-friendly term: “You may feel very sore, achy, scratchy, tight, snug or full, etc.” Use manageable, descriptive terms. Words such as scratch, poke or sting might be familiar for some children and frightening to others.

Hard or harsh term: “The medicine will burn.”
Child-friendly term: “Some children say they feel a very warm feeling.”