Miracle Ride: Our Riley Story

avatar
Holly Farabaugh
Miracle Ride Director of Marketing, Riley Mom
May 20, 2013
8:41 am

Twenty years ago when my in-laws conceived of the idea of the Miracle Ride, they did so without having any connection to Riley Hospital for Children. Who would have ever guessed that nineteen years later their first grandchild would need Riley.

Phebe and I at Riley Hospital last year

In February of 2012 I was seven months pregnant when my appendix ruptured. Phebe stayed in during my surgery at Bloomington, but 24 hours later she was delivered naturally. Phebe was 10 weeks early and just 3.3 lbs. Riley’s emergency team arrived within the hour and Phebe spent her first six weeks of life in the NICU at Riley.

As a committee member of the Miracle Ride alongside my in-laws and husband, I was quite aware of how great Riley is, but you do not truly know until you witness it first hand. The nurses and doctors are truly amazing. They have nothing but your child’s best interest in mind. I feel extremely lucky because my child was only early due to something that was wrong with me.

Every year through the Miracle Ride we choose Riley families to serve as ambassadors to the event. One of my favorite Miracle Ride duties is being the main contact to the Riley families. They have all been truly remarkable people, who would do anything to raise funds for Riley Hospital for Children.

 

Riley kids, parents and staff members line up outside the hospital to cheer on participants during Miracle Ride

We will celebrate the 20th Miracle Ride May 31st – June 2nd , 2013 and this year’s donation should surpass $4 million total raised for Riley Hospital for Children. I must say that my in-laws Debby and Michael Farabaugh and my husband Ryan are truly remarkable people for having worked so hard for the past 20 years to raise funds for Riley through the Miracle Ride, and now we are a Riley Family. It is strange how life comes full circle.

To register for this year’s Miracle Ride, click here.

 

 

Posted in Uncategorized | Tagged , , , | Leave a comment

My Brave Brother’s Mission: Please Vote

avatar
Sierra Tamosaitis
Riley Sister and Volunteer
May 15, 2013
8:28 am

My brother, Braden, and I at Riley Hospital

As I write this I am sitting in a waiting room at Riley Hospital. I have spent more hours and days sitting in waiting rooms here than I can begin to count, waiting for my brother. Braden is 8 years old and was born with Spina Bifida, hydrocephalus, and many other things that are associated with each of those conditions. He has been through 16 surgeries, hospital stays as long as 37 days at a time, and too many tests and procedures to count. One thing I’ve noticed as he’s endured so much is how he always comes through on the other side with a smile on his face ready to play. There’s not a place we can go in the hospital today that we don’t run into one of his friends he’s made throughout his numerous visits here. Riley has truly become our second home and an extended family.

Throughout this journey, I’ve learned many things from my little brother, something I’d never thought possible! He’s truly an inspiration to me on a daily basis. Who else would come out of anesthesia after a brain surgery and be ready to sit up and play beach ball right away? Because of his love for playing beach ball in the hospital, he wanted to share with others so he managed to collect over 700 beach balls for the kids at Riley; that’s a huge feat for an eight year old. His love of Riley and spirt of always wanting to help other kids like him has inspired me to decide to go to school to become a Child Life Specialist as well as volunteer for the Summer of Service program through Riley.

Braden is currently in the Battle of the Brave contest through Speedway that will help him give back even more to kids like him and he needs your help with it. All you need to do is click here to follow the link and vote for Braden once a day through the end of May to help the hospital win $25,000. (Please make sure to click “Vote for this Entry.”)

While I sit and wait for Braden to be done with another appointment, he’s waiting for you to vote and help him help his Riley family.

Posted in Uncategorized | Tagged , , , | Leave a comment

Matthew’s Angel

avatar
Hope Dyer
Riley Mom
May 14, 2013
1:03 pm

My son Matthew was born April 27, 2000; I knew right away something was wrong. We couldn’t lay him down to sleep  ̶  we had to put him in a swing or hold him. Matthew cried a lot and would often turn blue around his mouth. I called the doctor almost every day. At his one month checkup, Matthew’s oxygen blood level was dangerously low. The doctor told us he could get Matthew an appointment at Riley Hospital for Children next week. Two of my friends were with me, and they said, “No, tell him NOW!” So, I called back, and our doctor told us to bring Matthew to Riley the next day.

Dr. Rich Schreiner looks through Matthew's baby pictures with the Dyer family during a recent visit to Riley

By the time my husband Joe and I got to Riley Hospital, we knew something was very wrong. Dr. Rich Schreiner just happened to walk by me in the lobby as I waited for Joe to park the car. He stopped and asked me if I needed help. The whole time he was looking down at Matthew in his car seat. He bent down and touched Matthew, then asked me if he could have him. I said, “No!” Then he asked me to go with him, and said that Matthew needed help. I was scared, but Dr. Schreiner said, “Please, you have to trust me,” so I went with him upstairs.

The cardiology team asked us to hold Matthew and help him calm down. Then, Dr. Caldwell told me to lay Matthew down and step back. They were on Matthew like a swat team. Joe and I stepped out of the room. We were very scared. Dr. Caldwell came out and asked us why Matthew wasn’t brought in sooner. I explained that we were following the advice of our hometown doctor, and I started to cry. Dr. Caldwell looked at me and said something I will never forget: “This is not your fault. You didn’t do anything wrong. I am sorry.”

Matthew Dyer from Wolcottville, Ind., with one of the Riley doctors who helped save his life, Dr. Rich Schreiner

He went back in and they did emergency surgery to save Matthew’s life. We found out Matthew would need more surgery the next day, for arterial switch of the great arteries. On the morning of the surgery, performed by John Brown, M.D., I was in the shower when I started to cry. I was begging God, “Please, please let my baby be okay. I love him so much.” I know this might sound crazy, but I felt God wrap his arms around me and help me to my feet. Then I knew Matthew was going to be okay. I went back to the room, and told Matthew that he had to fight. I told him how much we loved him.

Once we got the news that he Matthew had made it through the surgery, my husband gave me a big kiss that I will never forget! We were so happy and relieved. As Matthew recovered, the nurses told us they couldn’t believe how much Dr. Schreiner had been on that floor to check on him. We never saw him. I guess you don’t see angels, though.

Today, Matthew is 12 years old and doing great, thanks to follow-up care at Riley that included a pacemaker. He is a blessing, and we cannot thank Riley enough. It was a miracle for Dr. Schreiner to be at that door; I am so happy that I trusted him.  We thank God, the Riley doctors and nurses, Ronald McDonald House, family and friends for
saving Matthew. I know there are angels out there.

This story is an excerpt from the Voices of Riley section of the Spring 2013 Riley Messenger magazine. To view the entire magazine online, click here.

Posted in Uncategorized | Tagged , , , , | Leave a comment

A Riley Champion’s New Battle

avatar
Riley Blogger
Blogger
May 13, 2013
3:17 pm

2013 Riley Champion Jon Nugent

One of our 2013 Riley Champions received some tough news this week. Jon Nugent from Valparaiso has fought a brain tumor once. Now, he needs to fight again. Jon has developed another brain tumor.

Jon’s first battle at Riley Hospital included surgery, chemotherapy and 13 proton therapy sessions at the IU Health Proton Therapy Center, which he completed in July 2010. After a stroke, Jon worked hard to relearn basic skills. The Washington Township High School sophomore was able to get his strength back and play varsity soccer, JV volleyball along with managing two girls’ athletic teams while earning high grades. He has become a strong advocate for pediatric brain tumor research, and hopes to become a neuro-oncologist.

Jon doing what he does best: living life to the fullest

As Jon’s parents say, they know he is ready to fight through round two. As they begin the process of seeking answers and developing a treatment plan, they can take some comfort in knowing that Jon is receiving the highest level of pediatric cancer care available in the state. The Nugents should also know that they are all surrounded by strong support from friends and strangers within the greater ”Riley family” that so many of us belong to.

We are with you, Jon. Stay strong, Champion!

We welcome you to leave your own message of support and encouragement to Riley Champion Jon Nugent in the comments section of this blog, or on the Riley Children’s Foundation Facebook page post that includes this blog link.

Posted in Uncategorized | Tagged , , | 10 Comments

A Magical Night Under the Sea

avatar
Chris Edwards, Ed. D.
Riley dad, teacher and author
May 6, 2013
12:26 pm

Riley Cancer Center patients and families dance the night away at their "Under the Sea" Prom

When a child gets diagnosed with cancer, everyone in the family gets plunged under the C. Under C level, one encounters surgeries, radiation, chemotherapy, blood transfusions, bone marrow transplants and things called “five year survival rates.” It’s hard to breathe there. That’s why the Riley Cancer Center Prom, put on last Friday, is such an important event. On that day, kids with cancer and their families got to forget, at least for a while, that they were under the C and got to enjoy being Under the Sea.

Under the Sea, everybody danced and ran around having fun. Gowned girls with bald heads danced with tuxedoed toddlers with scarred heads. The buffet table contained meatballs, tacos, and like 15 types of specialty macaroni (I ingested more carbs that night than the top 5 finishers of Saturday’s mini marathon combined). The magicians mesmerized my children with their tricks, and even left the old skeptic here scratching his head. We all ate a lot of ice cream.

The Women for Riley volunteers who helped fund and organize Riley Prom gave many of us something very valuable; a little time away from worry. For a few hours, surrounded by people who have all been under the C, it was easier for the families to breathe.

I know I speak for a lot of parents and kids when I say thanks to everyone who worked to put it on.

Volunteers from Women for Riley are the lead organizers of Promingdales and the annual Riley Cancer Center Prom. Click here to learn more about becoming a member of Women for Riley.

 

Posted in Uncategorized | Tagged , | 2 Comments

Riley Gives Hope: Ella’s story

avatar
Angela McBride
Riley Mom
May 1, 2013
5:01 pm

Ella with Riley pediatric nephrologist Dr. Sharon Andreoli

Riley gives Hope.
First, you have to have faith. We have been through some scary times with our daughter, Ella, but we had faith that God was watching over her and us and He placed us at Riley for a reason. We feel that He has blessed us with an amazing children’s hospital where there are so many gifted doctors and nurses who truly care for the well-being of the children.

 

 

Ella, our "miracle girl"

 

I think the hardest day of my life is when Ella was first admitted to the hospital and we were finding out that something was wrong with her heart and her kidneys. The doctors just didn’t know what was causing the problem. (And we didn’t figure out until much later that they didn’t think Ella was going to make it.) We’ve heard several times that Ella’s case is very complex. She has been through many surgeries, including her most recent operation which involved a rare auto kidney transplant. Riley surgeons removed her right kidney, reconstructed a problematic artery and transplanted it back in. Ella truly is a little miracle. She is certainly the bravest little girl I know.

Ella with her Riley transplant surgeon Dr. William Goggins

 

One special thing I remember before Ella’s last surgery was right before her transplant surgeon, Dr. Goggins, went back to prep, he asked his nurse to play a specific song in the operating room for Ella. It was a song that we had mentioned to him at  a previous appointment that was very special to Ella and our family. He remembered that, and made a point to have that played so it would be of some comfort to her.  That really touched our hearts.

We are so thankful for Riley, from the Child Life Specialist who comes in before it is time for anesthetic to make sure the child understands what will occur and lets them decorate their own mask, to the person who sits with them in recovery before Mom and Dad can come back, to the “snack lady” who comes around to the rooms in the afternoon, to the caring nursing staff, to the wonderful doctors.

You never expect to have to watch your  child lying in a hospital bed not knowing the outcome. If you have a child with medical, emotional, or physical needs, I pray that you will find that faith in God will give you the strength to make it through each day. There were days I thought I was going to go crazy and wasn’t sure if I could make it till tomorrow (some days can be so overwhelming) but luckily I was able to keep the faith. I know God placed certain people in our path to help us through the past six years.

Never give up hope!

 

 

 

 

Posted in Uncategorized | Tagged , , , | Leave a comment

Battle of the Brave: Vote for Braden!

avatar
Kevin Tamosaitis
Riley dad
May 1, 2013
11:41 am

Every once in a while in life, you get a chance to do something really, really small, and make a really, really big impact.

Here’s one of those chances.

Your votes for Braden during the month of May could help Riley Hospital earn $25,000

My son Braden has been a “Riley kid” for all of his life due to spina bifida. He’s only 8 years old and he has been hospitalized more than 15 times, enduring a long list of difficult surgeries. But anyone who knows Braden knows that his huge grin and his big heart are stronger forces than the challenges he was born with.

Braden absolutely loves helping Riley Hospital. We have seen time after time how excited he gets about when he sees how much money is raised for Riley at the Dance Marathons we attend on college and high school campuses all over the state.

I have to wonder – how would he feel if Braden helped Riley raise an additional $25,000 – just by being himself?

Starting today, Braden is representing Riley Hospital in the Speedway “Battle of the Brave” Facebook promotion. If he receives more votes than any other Children’s Miracle Network Hospital representative during the month of May, he will earn a $25,000 gift from Speedway for his beloved Riley Hospital.

It’s something small that could lead to such a big victory for Braden, for our family and for Riley. We are asking for your vote. Click here to vote for Braden now! (Please make sure to click on “Vote for this entry” once you reach the page.) Then, stop what you’re doing and set your phone or calendar to remind you to vote once every day, and ask your friends and family to do the same.

I hope you will share this post on your Facebook page, and ask everyone to help make this miracle happen for Braden. We have seen how much Riley helps families, and it’s our pleasure to help Braden continue building support for the hospital that has become like our second home.

Thank you in advance for your support!

Posted in Uncategorized | Tagged , , , | Leave a comment

Thank You to the “Author of Many Happy Moments”

avatar
Geri Cunningham
Riley Grandmother
April 29, 2013
1:05 pm

11-year-old Riley kid Layla Cunningham (right) gets dolled up at Promingdales with her sister, Camari

I am the proud grandparent of an adorable granddaughter named Layla Cunningham who has been diagnosed with brain cancer. Can’t say she has survived this cancer, but I do say she is surviving this cancer. It has been a long six years already, but I’d like to personally thank Riley Hospital.

Volunteers helped the girls choose perfect prom night accessories

Layla doesn’t have a problem smiling and being happy in the midst of her dealings with this cancer. Riley has been the author of so many happy moments for us. I speak for the entire family when I say “us.” Riley has a very unselfish way of extending wishes for happy and healthy children to whole families. If you’ve ever cared for a sick one, you know it usually takes a family effort to get to the appointments, to give the meds, or to provide comfort in the middle of the night. It is definitely a group effort.

Promingdales was the best idea I think I’ve seen so far…the whole idea, the set-up, the feeling in the air, and the smiles on everyone’s faces will never be forgotten! I can’t say enough about the wonderful volunteers  -  they were the nicest people I’ve ever met. There were no strangers in the room!  As we got to the end of our “shopping,” we were hugging each other like we were long-lost friends saying goodbye to each other.

At the Riley Cancer Center Prom this Friday night, the whole family will get a chance to be together, to enjoy each other’s company, and dress to the hilt, creating a feeling of “this is a special moment.” I’m tearing up as I type this, because I have already felt the excitement of my granddaughter. Even though we were on our way to the second doctor’s appointment when we stopped by Promingdales, our evening ended on a high note, with the girls carrying “shopping” bags from our shopping spree and looking over the purses, earrings and shoes. If we’ve never been to a boutique, I can sure say I feel like we have! We are very blessed to be under the care of such a caring organization!

Volunteers from Women for Riley are the lead organizers of Promingdales and the annual Riley Cancer Center Prom. Click here to learn more about becoming a member of Women for Riley.

Posted in Uncategorized | Tagged , | Leave a comment

Fearless Heart: My Riley Story

avatar
Jaime Robbins
Riley Cardiology Patient
April 23, 2013
12:53 pm

I have been going to Riley Hospital for Children all my life and have never felt like a patient. Riley does not make you feel like a patient, they make you feel like a kid.

Jaime Robbins with her mom, Betsy

I was born with a heart defect called Tricuspid Atresia which means I was born without a tricuspid valve and without a right ventricle. At age 2, I received open-heart surgery and the surgeons bypassed the entire right side of my heart. Since then, I have had some complications and have had limits all my life. Although having a heart condition is challenging, the staff at Riley has helped me since day one.

I have been to Riley many times in my life, but I’ve spent more time there this year than I typically do. It all started on the morning of my senior homecoming. My heart was in atrial flutter and atrial fibrillation. (This means it was beating too fast and the beats were not in rhythm.) I was taken to the emergency room and ended up spending five days in the hospital. I was not scared at all; everyone at Riley was positive and up-beat.

My heart eventually had to be shocked back into rhythm. I was also given new medicine and then sent home. I now am scheduled for another open-heart surgery this summer, before I go off to college.

Being a Riley kid sure has had its ups and downs and although things aren’t perfect, I would not change who am. I have been given so many opportunities and have met so many wonderful people. I believe my condition has made my family closer and brought my friends together. The staff at Riley has always gone the extra mile to take interest in me and make me feel special. All my nurses are so funny and really make me laugh. Dr. Robert Darragh and Dr. John Brown have been amazing. Susan Gude has supported me since day one and has gone with me to any procedure she could.
At age 6, I went to Riley for a check-up and took a stuffed penguin with me. I had to get a chest x-ray and afterward the x-ray tech took my penguin, put it on the big x-raying table, and took an x-ray of it for me. I still have the x-ray, and every time I look at it, I am reminded of how much everyone there cares.

Being a kid with a serious health issue really makes you grateful and more compassionate. This year during my school’s Dance Marathon for Riley, I talked about my upcoming open-heart surgery. I explained to them that many people tell me I am strong, because I am not very scared. The reason is not because I am strong; it is because I know I will be at Riley.

There is no better place to be and I know I will be in great hands.

 

Posted in Uncategorized | Tagged , , , | Leave a comment

Fighting

avatar
Riley Blogger
Blogger
April 22, 2013
2:44 pm

Analeis Garcia with Riley Cancer Center Child Life Specialist Krista Ward

11-year-old Analeis Garcia smiles as she looks at the spread of candy lying on a table in front of her. The artsy fifth grader from Monticello has worked on lots of crafts during her treatment for acute lymphoblastic leukemia (ALL) at Riley Hospital for Children. But today, Analeis will try something new.

While other children play with a train set nearby in the bright activity room in Riley’s new cancer center in the Simon Family Tower, Analeis mixes tiny candies and sprinkles into a cup of corn syrup. Child Life Specialist Krista Ward is teaching her how her red and white blood cells work to keep her healthy. “Isn’t that cool?” Krista smiles while Analeis carefully picks up another candy with rainbow-colored fingernails. Krista counts along slowly as her young friend’s thin hand – trembling slightly – drops more than 40 candies to the cup.

Analeis is fighting to get well and get back home.

Her doctors and nurses are fighting to get the cancer out of her blood.

Her Child Life Specialists are fighting to keep a smile on her face.

They are all Riley heroes.

Child Life services are offered to all inpatients at Riley Hospital for Children at IU Health, regardless of their insurance situations. Donations through Riley Children’s Foundation sustain this critical program.

 

Posted in Uncategorized | Tagged , , , , | 3 Comments