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.”

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.

Exchanging Dollar Bills for Duck Bills

Posted on August 15, 2015 by trio_admin

It’s been 13 years since Molly Alspaugh first met the Sipos family.

Their paths crossed during the construction of the freestanding Monroe Carell Jr. Children’s Hospital at Vanderbilt. Rob Sipos was a project engineer for Centex Rodgers, the construction firm tasked with building the pediatric health care facility. Alspaugh, a senior interior designer with ESa is the architectural and design firm responsible for the hospital.

Alspaugh remembers when Sipos’ son, Gabe, was diagnosed with rhabdomyosarcoma in 2002. One Christmas, her firm purchased everything on Gabe’s entire wish list.

“It was amazing,” recalled Lu Sipos. “Some of those toys are still being used by children in our neighborhood. They have been well-loved for sure,” she laughed.

“It didn’t surprise me when Molly decided to help Gabe’s Chemo Duck program recently. It has been very fulfilling to reunite with so many friends who supported our family when Gabe was sick and to know that they continue to support children living with cancer … well it’s hard to even put into words!”

Alspaugh said the ESa’s motto – for the kids – was a consistent theme during the hospital build more than a decade ago. It continues to play a role in the firm’s commitment to community outreach.

The company hosts $5 Fridays as a way to raise money for various charities and recently sponsored a dress-down day to support Chemo Duck.

“When we saw that there was a way for us to help kids out – we were in,” she said. “We raised $500 for Chemo Duck. It was one of the most successful ones ever.”

The personal connection to the family was a definite appeal for donations, she said. The company plans to host another event next year.

The first week of August the Sipos family met with ESa employees at its Nashville offices. The gathering was a great reminder of the impact their work has on families, Alspaugh said.

“There were a lot of our folks who worked with Rob on the Children’s Hospital project and remembered Gabe’s story and the tough journey they traveled.

“It was great to be able to see Gabe – he is such an outgoing young man and truly inspirational and to learn what he is doing to develop Chemo Duck and the role he plays in the program was really neat. The last time we saw him he was just a baby and now he is making a difference in the world.

“It was truly gratifying to see the success of Chemo Duck,” she added.

“It’s wonderful that it is so effective and on such a global scale.”

Sipos said the fundraiser held by ESa will provide Chemo Ducks to 16 patients.

A Pathway for Parents, from Parents: Part IV

Posted on July 15, 2015 by trio_admin

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

Posted on June 20, 2015 by trio_admin

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.