Your Glimpse into Riley History

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Tom Lund
Riley Hospital Librarian
April 10, 2013
1:46 pm

The Donor Cabinet in the Edward A. Block Family Library holds records of the original donations that supported the construction of Riley Hospital in the 1920s

The Edward A. Block Family Library occupies, in part, the original 1920′s lobby of Riley Hospital for Children at IU Health. Among several historical artifacts that reside within “the Old Lobby” is what is colloquially known as the Donor Cabinet. We are very pleased to have this great artifact among the others that reside in the Library.

The Donor Cabinet is an ornate walnut cabinet filled with four vintage metal file cabinets that are filled with approximately 45,000 index cards that chronicle the original donations to the Riley Memorial Association (now Riley Children’s Foundation) that were made by one out of every five Hoosiers during the 1920’s to support the creation of the hospital. The cabinet also contains records of subsequent donations though the early 1950’s. It also includes the record made by Indiana school children who raised $17,008.42 for Riley –  the first of several similar efforts by children over the last 90 years aimed at helping their peers and this hospital.

Placed on the Donor Cabinet’s two doors are two brass plaques that are inscribed – (Left side) “Herein is Perpetuated the Record of the Gifts Which Made Possible This Hospital”, and (Right side) “That Remembrance of Those Whose Generously Provided for Childhood the Service of Physician and Surgeon May Endure.”

The Donor Cabinet reminds us all daily of the long and storied history that this hospital has, and the truly great and very generous community support that it has always received from Hoosiers throughout the State of Indiana.

Donations remain a critical source of funding for Riley Hospital for Children today, and are used to support important programs such as Child Life, social work and pediatric research. To learn how you can support Riley, visit the Riley Children’s Foundation website by clicking here.

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Caroline: The Pink Label Event

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Riley Blogger
Blogger
April 8, 2013
2:49 pm

It’s a beautiful way for friends of Riley Hospital to honor a beautiful child’s memory while celebrating the spring season of renewal. The Pink Label Event on Friday, April 26 and Saturday, April 27 is a two-day, high-end consignment sale featuring new and gently worn women’s, children’s, and men’s fashions and accessories for a fraction of the retail cost. It will be held at Cool Creek Commons, 2508 E. 146th St. (146th and Greyhound Pass, next to Fresh Market). This event is a shopper’s dream come true, offering the latest spring trends with NEW items from 8fifteen, Uber, Lesley Jane, 14 Districts, Niche, The Yoga Studio, Nikki Blaine Couture, AH Collection and more.

Proceeds go to the Caroline Symmes Endowment for Pediatric Cancer Research benefiting Riley Hospital for Children. Caroline Symmes was a 5-year-old fashion designer in training when she lost her battle with Wilms Tumor Disease. “We created the Caroline Symmes Endowment for Pediatric Cancer Research in loving memory of our daughter to ensure that all children stand a fighting chance against cancer,” said David & Libby Symmes. Click here to view Caroline’s video and learn more about The Caroline Symmes Endowment for Pediatric Cancer Research. You can also visit www.CarolineSymmes.org to learn more about The Pink Label Event.

We hope you will mark your calendar and invite friends to shop with you. Thank you for your help spreading the word about this wonderful annual event.

 

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A Student Superhero for Riley

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Chris Edwards, Ed. D.
Riley dad, teacher and author
April 4, 2013
8:05 am

IU Dance Marathon Committee Member Janaki Patel

When my son Ben, went through his first surgery, a few of my former students put together superhero gift bags for him and his brother. One of those students was Janaki Patel. I’d taught Janaki when she was a bright freshman in my Advanced Placement World History course, and she was about to graduate, in 2011, when she found out about Ben. A few months ago, Janaki contacted me and asked if she could adopt my family for Riley events. I told her we would be happy to be adopted and suggested that, now that she is a fully grown adult, she could call me “Chris.” (She reacted to this suggestion, as all former students do, as if she’d never fathomed I had a first name.) I also asked if I might interview her for the blog, as she’s representative of many of the young people at universities who are working to raise funds for Riley.

 

Janaki with her fellow IUDM committee members

Janaki is currently the Chair of Family Relations for the Riley Development Committee for the IU Dance marathon, which means she reaches out to Riley families to attend fundraisers and events, culminating in the big Dance Marathon at IU in the Fall. Janaki says she decided to get involved because of her firsthand experience in seeing “how much strain poor health can put on a family” and thinks the experience of working with Riley has helped her to become a better person.

The 2012 IUDM raised over $2 million dollars, but Janaki was not surprised, stating that “it was just a matter of time” because “everyone heard about it and Riley is such a great hospital.” She wants to see next year be a bigger success and is most proud of the way in which her Riley Development committee worked together to make the marathon “great for the kids and families.”

She expects to “keep a connection with Riley into the future and says that the hospital “…is such a big part of my life and it has taught me so much about myself and others. I hope to continue to keep in touch with these families and new ones…”

As Janaki’s experience indicates, the Dance Marathons not only raise vital funds for sick kids, but they integrate young people into a culture where they see that they can use their talents in the service of others. Having had Janaki in class, it did not surprise me to hear that she’s focused on becoming a doctor and thinks that her experience with Riley has made her consider a field where she can work with kids. I wonder if I will feel as awkward calling her “Dr. Patel” as she does calling me “Chris.”

Dance Marathons are Riley’s fastest-growing fundraising events. Click here learn how to start a Dance Marathon for Riley at your school.

 

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Hello, Dolly! (A Riley kid’s surprise)

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Riley Blogger
Blogger
April 1, 2013
8:00 am

5-year-old Alexis “Lexi” Ellenberger from Portage, Ind., was excited enough: she was having her picture taken for an article in Riley Messenger magazine. She has been a “Riley kid” since she was a baby, and her family was proud for the chance to share her story.

Alexis Ellenberger poses for Riley Messenger magazine

Photographer Kimberly Housely was hired by Riley to capture Lexi’s natural charm for the magazine spread. (Judging from the photos, she did a beautiful job.) Kimberly and Lexi hit it off during the shoot. Kimberly took note when Lexi mentioned how much she wanted to have an American Girl doll, just like her older sister. Lexi’s parents reminded her that her birthday was coming up.

 

Lexi and her new doll

 

A week or two later, a package arrived at the family’s home. Inside was the American Girl doll Lexi had been wishing for. Kimberly decided this was the perfect way to spend her earnings from the photo shoot. Lexi opened the box and screamed with delight. She is in love with her new doll.

Her mother calls Kimberly a “one-of-a-kind” person.

We call this a beautiful Riley moment.

You can read Lexi’s story in the new Spring 2013 edition of Riley Messenger magazine.

 

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Q & A with Dr. Robert Fallon

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Christy Cabe
Riley mom
March 27, 2013
2:03 pm

I’ll never forget where I was standing or how it felt when Dr. Robert Fallon delivered the news to me that my son had acute lympoblastic leukemia. It was an awful moment. However, the next words out of Dr. Fallon’s mouth were this, “The good news is, I’ve fought this hundreds of times and I know exactly what to do.”

Dr. Fallon’s confidence and expertise was vital to our family as he and his Riley team directed our son’s cancer treatment for the following three years.

Today our son is a healthy, happy, and cancer-free 2nd grader. He’s thriving and is the tallest kid in his class. We are forever grateful for Dr. Fallon and Riley Hospital for Children at IU Health for the wonderful care we received.

Robert Fallon, M.D.

Dr. Fallon has spent the past 12 years serving as section director of Pediatric Hematology/Oncology at Riley Hospital. He is also a Zachary Klingler Professor of Pediatrics for Indiana University School of Medicine. I asked him a few questions about his work at Riley Hospital. Here is what he had to say:

Q: What do you feel is the hardest part about your job?

A: It is a helpless feeling to have a patient who does not respond to treatment. We are fortunate that this is less common now than when I started practicing.

Q: What do you feel is the best part about your job?

A: Obviously, the flip side of the above situation is what drives us. There is nothing better than seeing a former patient make it to a graduation or a prom, thanks, in part, to something you did.

Q: You are the head of the Children’s Oncology Group? What does that mean and what does the Children’s Oncology Group do to help kids at Riley?

A: Since I’ve been at Riley I have been the “Principal Investigator”, or PI. The PI is legally responsible for the conduct of all of the research trials at Riley. It’s a big and important job, and luckily I have an amazing group of people here, from research associates, to supervisors, to research nurses, who are dedicated to this effort. This helps the patients who come to us at Riley, because they know that they have access to the latest research medications and protocols here.

Q: Are you involved in any type of research within your field of medicine?

A: I’m involved in Phase III trials in many types of cancer, with a particular interest in Lymphomas, Hodgkins Disease, and diseases that affect adolescents and young adults.

Q: Do you think it’s important to help raise awareness about Riley Hospital
for Children in the state of Indiana?

A: Everyone should know there is a tremendous resource in Indiana available to them – called Riley. No family should ever feel that they need to travel out of the state or region to obtain the best care for their child.

85% of children diagnosed with cancer in Indiana turn to Riley Hospital for Children for their treatment. To make a donation to support Riley’s cancer center or pediatric cancer research, click here.

 

 

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Siblings for Riley: Our DM Story

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Clare Scheller
Riley cancer survivor
March 25, 2013
1:11 pm

 

Clare (right) with her siblings Maria, Leo and Theresa

Clare (right) with her siblings, Theresa, Leo and Maria

This month, the high school I graduated from in 2010 will hold its third annual Dance Marathon.  For those of you who don’t know, Dance Marathon is a multi-hour event dedicated to raising money for Riley Hospital for Children.  The event includes a variety of things, including music, games, and hearing stories from Riley families.  The first MDDM was started by my sister, Theresa, when I was in treatment for leukemia. They succeeded their goal, raising over $20,000.  My other younger siblings, Leo and Maria, have followed in Theresa’s footsteps by joining the MDDM committee.  Theresa has gone on to be involved in the even bigger Dance Marathon at Indiana University, which has raised millions of dollars for the kids at Riley.  Now, we both are on the executive committee at the University of Southern Indiana.

 

With finishing chemo last July, I love being able to be on the student side of DM.  It’s difficult to put into words what Dance Marathon means to my siblings and I.  It’s one of the many positive aspects that has come from my cancer diagnosis.  Being a Riley patient myself, I have seen first hand how important Dance Marathons are to Riley Hospital.  I have also been given the great opportunity to speak at various Dance Marathons across Indiana.  The bonds my family has made with other families through these events will last the rest of my life.  To see my siblings become involved with Dance Marathons means the world to me.  I also have several friends who have gone on to become involved with DM in college, which gives me the satisfaction that good things can result from even the toughest situations.  I think that my brother and sisters would agree with me when I say that DM gives me a passion for helping others and knowing that the actions of young people can make a huge difference.

 

To see high school and college students rally together all for one specific cause is such an inspiring thing.  Banners and t-shirts can be seen with the names of various Riley kids. The feeling one gets from attending DM is unlike any other I have ever experienced.  The best way to sum up DM is the quote: “Dance for a day, give hope for a lifetime.”

To make a donation to the Mater Dei Dance Marathon in honor of Clare Scheller, please click here: http://www.firstgiving.com/fundraiser/leo-scheller/mddm

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“Wait for Me!”: A Mother’s Story

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Riley Blogger
Blogger
March 21, 2013
11:50 am

Jaime has fun during one of her visits to Riley Hospital

My third daughter, Jaime, was born 18 years ago with a congenital heart defect, tricuspid atresia, with related issues. Our time at Riley Hospital for Children at IU Health has caused us to be grateful on multiple levels. Dr. Robert Darragh, her cardiologist, is the master puppeteer. he was waiting for us the very first day we arrived at Riley and he has orchestrated Jaime’s health all along the way. Cardiology team members like Susan Gude and her radiant attitude are prolific at Riley and they have brightened many a dark moment. Dr. John Brown, her surgeon, is hallowed; merely whispering his name makes everything seem manageable.

Jaime has had a few procedures with “the biggie” being open heart surgery when she was 2-and-a-half years old. The right side of her heart was bypassed. Initially she didn’t fare as well as we’d hoped and we were in the hospital almost three weeks. We sneaked her sisters in to see her a few days after her surgery, and she did not utter a sound when they were in the room. But as they were leaving, she cried, “Wait for me!” That has been her shout ever since. She refuses to be left behind.

Jaime has led a life with few restrictions. She has never complained. From time to time, we Jaime Robbins with her mother, Betsyhave been back to Riley for reasons other than checkups. During her last unplanned visit, she had to be electrically cardioverted. At first, I could not be there, so I worriedly called my husband, who reassured me: “She has the world by the tail! Don’t worry about her. One nurse is trying to get an IV in her and is having some trouble. Jaime isn’t noticing, though, because the other nurse has the script from the school play and is helping her memorize her lines.” Take the crooked with the straight and you’ve got Jaime’s life in a nutshell. She is a spitfire – a mixture of spunk and determination.

Jaime is scheduled for another open heart surgery this summer. Her cardiologist told her it was her graduation gift. She has received another gift too – one of the 2013 Kiwanis Abe Lincoln Scholarship awards, honoring her personal courage and her passionate work in support of Riley Hospital through Dance Marathons.

There is a quote that hangs on the wall on my vanity: “I’ve clung for a long time to that moment when my daughter’s courage and balance lifted my own.” I read it every day and appreciate the words for the truth they speak.

The heart center at Riley Hospital for Children at IU Health is one of the top 10 busiest pediatric heart programs in the nation. Surgeons at Riley mend the hearts of 550-650 children per year, and Riley pediatric research teams investigate ways to prevent and treat heart defects.

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Faith.

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Brooke Magdzinski
Riley mom
March 18, 2013
12:28 pm

Taylor

I didn’t know what to say, so I didn’t write. I didn’t feel relief, and people want me to be relieved. It didn’t feel over, yet we are done. (Well, not totally done.) This happened to me once before, in the  beginning of our journey, when fear took over. It started waking me at night. Clouding my dreams. Stealing my happiness. This is what happens when I allow fear to take over.

 

Taylor finally has her chance to ring the bell at Riley, celebrating the end of her chemotherapy treatment

Reality check. We are so blessed. Taylor is done with chemo and radiation. Chris held our daughter up to ring the “end of treatment” bell at Riley after her final chemotherapy treatment - a moment she had patiently waited for. We are one clear scan away from a surgery to remove her port, and life to be normal for her again. Every day her immune system is getting stronger and stronger. People lose their kids every day. To cancer…. to tragedy….. to things that come without any warning at all. How lucky am I to have a changed heart at 32 years old? I know what’s important in this life. Chris and I have walked through our darkest days, together, and somehow came out on the other side of this. So we have scans every 3 months….. we can do scans.

Taylor and her mother hold hands during her final chemo session

Taylor is not a statistic, a prognosis, or some kind of ticking time bomb. She is an amazing, resilient, little fighter. My faith is in God, and now I feel relief.

 

*Since this entry was written, Taylor’s family is happy to report she has received a clear scan.

(85% of Indiana’s pediatric cancer patients turn to Riley Hospital for treatment. To learn more about supporting Riley, visit www.rileykids.org.)

 

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Working, not waiting, for a cure

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Andrew Templin
Diabetes researcher and patient
March 14, 2013
12:28 pm

 

Riley diabetes researcher Andrew Templin spends his days investigating the disease he has lived with since age 17

It happened suddenly. The summer after my junior year of high school, a few weeks before my 18th birthday, I was diagnosed with type 1 Diabetes. I was diagnosed during a visit to my doctor for an annual checkup, and prior to this I had noticed relatively few symptoms.

Following the initial shock and fear that comes with learning one has an incurable disease, my mind turned to learning as much as I could about diabetes, and to using this knowledge to take care of myself. It didn’t take long to understand my life would be different from that point forward. What I didn’t anticipate at that time was how having diabetes would shape my path in life.

I have always been interested in science, but after my diagnosis, I became extremely fascinated in the progress being made towards curing diabetes. While in college at Indiana University, I studied biology and chemistry, and after graduation, I began conducting medical research at Northwestern University. During this time, I realized how important research contributions are to the lives of people with disease, and how much work there is to be done. I decided to move back to Indiana University to begin conducting diabetes research and to pursue my Ph.D.

Currently, I am completing my Ph.D. in Cellular and Integrative Physiology, working with around 40 other research scientists studying diabetes at the Wells Center for Pediatric Research. Our group works toward finding better treatments and ultimately, a cure for diabetes. Through living with and working on diabetes, I have developed an intellectual attachment to my work. It also helps me pursue a very personal passion: finding a cure.

The Wells Center for Pediatric Research, supported by funding through Riley Children’s Foundation, is connected to Riley Hospital for Children at IU Health. Riley offers the largest and most advanced pediatric diabetes research program in the nation.

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Shine. Pray. Believe.

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Melissa Manges
Bremen H.S. Guidance Counselor
March 12, 2013
12:38 pm

This year marks the fourth year that Bremen High School has held a Dance Marathon. I don’t even remember now how we got started that first year, but I can say that every year is touching, moving, and rewarding. And this year is going to be another fantastic year!

We are a small community in Northern Indiana; our high school enrollment hovers  around 500. And yet, we have been deeply impacted by cancer, and especially by Riley Hospital for Children, this year.

Dylan Shumaker

 

In June of 2012, one of our students, sophomore Dylan Shumaker, suffered from terrible leg pain. Dylan was airlifted to Riley Hospital, where he was diagnosed with Myxopapillaery Ependymoma, a form of spinal cord cancer. Over the summer, he underwent surgery to remove as much as possible from the tumors, and then during the fall, spent six weeks getting treated at the IU Proton Therapy Center in Bloomington. Thursday, October 11th, 2012, Dylan received his final treatment. A group of friends and family traveled to Bloomington to celebrate with him. All was well.

Brock Meister

The very next day, on the morning of October 12th, 2012, Brock Meister, another  sophomore and one of Dylan’s good friends, was having trouble with dizziness and blurred vision. Brock visited several doctors that day, and was sent that evening to Riley Hospital in Indianapolis after being diagnosed with a rare malignant brain tumor called a Germinoma. Brock has completed 12 weeks of chemotherapy and has also been in Bloomington receiving proton therapy for the past four weeks.  He will finish his treatment this week and return home.

 

Seth Young

Unbelievably, exactly one month after Brock’s diagnosis, on November 12, 2012, local 5th grader Seth Young was diagnosed with acute lymphoblastic leukemia (ALL). Seth had been fighting a terrible cold and cough for quite a while, and doctors eventually did a complete blood workup. Seth and his family were sent to Riley Hospital immediately after discovering he had leukemia. Chemotherapy was started the next day, and 29 days later, Seth was in remission. However, his battle is far from over. For the next three years, Seth will undergo treatment to keep the leukemia at bay.

Knowing all of this, as we were choosing a theme for our Dance Marathon, the students wanted something that honored all three boys. Each boy has his own “motto,” I guess you could say: Shine for Seth. Prayers for Dylan. Believe in Brock. Thus, the students chose an acronym: “SPB for Riley.”

The theme took on a life of its own, and the students have worked long and hard, diligently trying to find ways to make this Dance Marathon special. All three families will be speaking. Surprise guests have been invited. Many activities are planned: swimming, dodgeball, crafts, corn hole, Twister, card games, and of course, DANCING! It will be six hours full of fun, love, and lasting memories.

A wise man whose own daughter battled cancer once told me, “It’s all about the experiences for these kids. They give up so much during treatment, so many things people don’t even realize.” So this year, Bremen High School hopes to give Seth, Dylan, and Brock an EXPERIENCE they will never forget!

To make a donation to the Bremen High School Dance Marathon, please click here.

Dance Marathons are Riley’s fastest-growing and most dynamic annual fundraising events. To learn how to start one at your school, click here.

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