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Sing Me a Story

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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

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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

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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

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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!

Exchanging Dollar Bills for Duck Bills

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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

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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.

Just What the Doctor Ordered

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How do you tell a four-year-old she has cancer?

What is the best way to explain the multitude of medical procedures she will undergo?

The prescription: Chemo Duck. 

“We had no idea how to tell our daughter what was going on,” said Jonathon Swersey, dad to Belle. “We asked the doctor what he suggested. He said to show her what is going to happen on an inanimate object.”

“We were in the resource room and we saw him – a really cute duck. It was in the first week of diagnosis and we were trying to get used to our surroundings, the diagnosis and our own feelings. We went to take a look at him and he had a bandana and a tubbie,” recalls Jonathon.

“We knew this is what we needed to help Belle through this journey.”

Belle was born with neurofibromatosis type 1 (NF1), a genetic condition characterized by changes in skin coloring (café-au-lait spots) and the growth of benign tumors along nerves in the skin, brain and other parts of the body. Some affected individuals also develop optic gliomas, tumors that grow along the nerve leading from the eye to the brain. The condition occurs in one in 4,000 people worldwide.

Belle is followed closely by a team of physicians. When she developed a tumor in her jaw that began to grow, doctors conducted several tests including a biopsy. It showed she had rhabdomyosarcoma – a cancer made up of cells that normally develop into skeletal muscles.

Her treatment regime calls for 54 weeks of chemotherapy plus surgery and/or radiation therapy, said her dad.

“Belle is incredibly self-aware and opinionated,” said Jonathon. “Chemo Duck really helped in the process of educating her.”

“She plays with him and it resonates with her. We talk about how the duck is feeling and she is able to relay how she is feeling as well. It is a great tool to talk to children about the disease and cancer treatments in an age appropriate way where you can still be candid and honest.”

Jonathon said Chemo Duck has also been very helpful in teaching their youngest daughter, Sadie, about how to interact with Belle (by not pulling her on her tubbies).

Belle is treated at the Dana Farber Cancer Institute in Boston and frequently visits The Jimmy Clinic for treatments and check-ups. She recently sent a letter to the Chemo Duck creator to express their gratitude for the teaching tool.

In return, they received a surprising gift: a video from 13-year-old Gabe Sipos, who was diagnosed with rhabdomyoscaroma in 2002.

“She plays that video over and over,” said Jonathon. “Gabe’s message is very understandable for her and it helped us help her feel stronger and in control.”

Jonathon said the support they received from Chemo Duck has offered them hope.

“This program really makes you believe in the positive and the longterm,” he said. “It has reinforced our hope.”

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.