Exchanging Dollar Bills for Duck Bills

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

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

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

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

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

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

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

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!

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

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!