April 24, 2016 – Sneha Dave

Sneha’s Riley Story:

Sneha Dave is always in motion. Whether she’s on the tennis court, a hiking trail or volunteering her time, the Greenwood 15-year-old leads an action-packed life. She is the picture of perseverance.

Sneha was only 6 years old when she was diagnosed with ulcerative colitis, a painful inflammatory bowel disease. “Ulcerative colitis is so challenging that I can’t describe all of its consequences,” explains Sneha. “When the colon is ‘made’ the whole body takes a beating. My joints would hurt. I developed skin nodules and mouth ulcers. I had fevers all the time. I lost my appetite and wasted away.”

In 2010, her condition took a turn for the worst. Her flare-ups drained her of energy and required heavy medication and multiple hospitalizations. “We saw Sneha’s life turn upside down, spending most of her time in the restroom, bed, and hospital,” explain her mother, Seema. “She stopped going out of the house completely.” But with the help of the staff at Riley Hospital for Children, Sneha and her family gained strength and hope. “The nursing staff, child life specialists and volunteers went out of their way to make us feel comfortable and bring us happiness during our most difficult times, “ recalls Sneha’s father, Sachin.

A special friendship with a fellow Riley patient helped Sneha cope with her disease – and changed her heart forever. Cory Lane was coping with Crohn’s disease and cancer. Sneha and Cory became close friends, until he passed away last May.

“I remember the time I went to his house when he was under hospice care,” says Sneha. “He was so sick, and he taught me a value I will never forget: ‘Make life an adventure. Make every day and adventure.” I learned from him that every day is a choice. You can make that day good or bad depending on what you choose it to be. His legacy will always live on.”

Sneha honors Cory’s legacy by continuing to write the Crohn’s and Colitis Teen Times, a newsletter they started together. She also volunteers at an area hospital while balancing schoolwork at Center Grove High School, where she is a top student and a Metropolitan Interscholastic Conference Scholar. “Sneha’s positive spirit, resilience and compassion for helping other patients made her an incredibly Riley Champion,” says Riley Child Life Specialist Amanda Banker, who nominated Sneha for this honor.

Sneha’s ultimate goal is to become an interventional radiologist at Riley Hospital, following the footsteps of Riley radiologist Francis Marshalleck, M.D. “ I want to make a difference in the world. It doesn’t have to be big, but it has to be meaningful,” Sneha promises. “Evan a small positive change, one person at a time, would be a giant step for humanity.”

April 17, 2016 – Makenna Gibson

Makenna’s Riley Story:

Age 8, 9/17/05

Makenna was born 45 minutes after her baby shower at 3 months premature. She was born 1 pound 6 ounces and 11 inches long. We had an emergency c-section at our local hospital and then she was rushed to Riley and placed in the NICU. She spent 87 days in the NICU with many ups and downs and scary moments.

She was discharged on her due date and came home on oxygen and an NG feeding tube (nose feeding tube). 3 weeks after coming home the day after Christmas she had cardiac arrest and was back in the Riley ER receiving full support to bring her back. She then stayed for 30 days in the PICU at Riley where they tried to figure out what was wrong with her and how to help her. Makenna was back on a ventilator and a very sick baby, we were terrified. After 30 days she was back on a small amount of oxygen and released to us. Right before her first birthday we decided her eating wasn’t progressing as quickly as we had hoped so we opted to have a G tube put in (feeding tube in her belly).

In 2009 we moved to Baltimore Maryland to attend an intensive inpatient feeding therapy program for 8 weeks. Makenna was an inpatient and we rotated staying with her in the hospital as I never leave her alone in the hospital, just as my parents always stayed with me. We go in as a family and we leave as a family. While in feeding school Makenna gained lots of oral motor skills and progressed very well.

Today she is a vibrant 6-year-old little girl who loves life and her little brother. Due to Makenna’s difficult birth and time in the hospital she has the following diagnosis, prenatal stroke believed to have occurred during the second trimester, Cerebral Palsy, Apraxia, and general developmental delays.

April 10, 2016 – Bryson Faus

Bryson’s Riley Story:

Brian and I were married in 2012 and just a few short months later became pregnant with our first child. I had a pretty typical pregnancy, with the exception of finding out that our son had bi-lateral hydronephrosis (inflammation of the kidneys) about 6 months into the pregnancy. We had a few extra ultrasounds and were seen by a specialist a few time but we were told that the hydronephrosis could very well resolve on its own once he was born. Because of the hydro though, I was induced at 38 weeks and Bryson Kenneth Faus was born on March 5th, 2013 at about 9:15pm.

He was perfect! However, our world was turned upside down about 12 hours later when we found out the next morning that something was wrong with his little heart. The family doctor who can to do his newborn checkup heard a heart murmur. Although murmurs are not uncommon in newborns, since he already knew about the hydro and was planning to order an ultrasound of Bryson’s kidney’s he decided to also order an echocardiogram (ultrasound of the heart) just to be safe. The echo confirmed that Bryson had been bon with multiple congenital heart defects and he was immediately life-lined from Dupont Hospital in Fort Wayne down to Riley Children’s Hospital.

Once Brian and I arrived at Riley and were able to see Bryon in the NICU, we were met with a handful of doctors and medical staff. Riley performed another echo and we were informed that Bryson had an Interrupted Aortic Arch (the main blood vessel which blood flows to the body from the heart was not connected), Aortic Valve Stenosis (the valve leading to the aortic arch was extremely small), a VERY large VSD (essentially, the wall between Bryson’s left and right ventricles was almost non-existent) and an ASD (a hole between the two atriums). Bryson spent the next 5 days in the Riley NICU connected to IVs and medlines going into his belly button, which helped make sure a vital vessel remained open to allow blood flow to the lower half of his body. At not even 6 days old, Bryson underwent his first open heart surgery, the Norwood Procedure. He remained at riley until he was about 3.5 weeks old. He spent time in the PICU and then the Riley Heart Center. While there, Bryson was also referred to a Riley urologist who confirmed that the hydro was worse then we originally though. He came home on 6 different meds, supplemental oxygen, an ng feeding tube, and on a heart monitor 24/7.

Without continuing for another 2 days explaining everything that Bryson has been through in his short life, I will simply end with this: Bryson is now 17 months old and has had countless clinic visits, numberous tests, multiple inpatient stays and a total of 10 procedures which included: 2 cardiac catheterizations, 2 ureteral stent placement procedures (total of 3 stents), a g-tube placement, a 2nd open heart surgery knows as the Rastelli procedure, ureteral stent removal, and a ureteral re-implantation. He may need yet another kidney surgery at some point in the next year or so and will have to have his new pulmonary vale replaced multiple times throughout his lifetime. Our hope is that at some point he will no longer need to be

following by urology, but unfortunately, Bryson will always be a heart partient and need to be followed by cardiology throughout his life.

Although Bryson has been through more in his 17 short months than most people have to endure in their entire life, he is still the happiest, silliest, sweetest, most energetic little guy I have ever known. He is now g-tube free, only on 2 heart meds and a propholactic antibiotic to protect against UTIs, completely off oxygen and no longer requires a heart monitor.

We will never be able to thank everyone at riley enough for what they have done for Bryson and our family. From our first, terrifying day there we have known that he was in the best possible care and we have trusted his medical team 110%. Because of Riley, Bryson was given a fighting chance. Without their intervention, there is no doubt that Bryson would not be with us today. The nurses at riley are truly gifted and show such care and compassion to each of their patients.

Bryson has grown to know and love the ‘red shirts’ (except when they have to poke him, he’s not always a fan then but quickly forgives them). He has had the same echo tech, Amy, since our first clinical visit when he was 1 month old and we have all 3 grown to love and adore her! Not only has the Riley team provided superior care for Bryson, but we have always felt that the nurses and staff strive to care for the family unit as a whole. During the most trying of times, when Bryson was in the NICU and recovering from OHS in the PICU, the nurses always made a note to check on Brian and myself; to make sure we were getting rest and caring for ourselves as well because they knew we would need to be in tip-top shape to care for Bryson on our own once we brought him home. During that first week, his surgeon always made a point to check on me each day because he knew that I had just given birth and been released less than 18 hours later an in a great deal of stress.

Every staff member at Riley is always willing to answer any and all of our questions (no matter how crazy they may seem) and if they are unable to answer us, they always with to find someone who can provide the best possible answer.

April 3, 2016 – Ella McBride

Ella’s Riley Story:

From the time Ella was 6 months to a year, she had stopped growing and was not hitting milestones. We were visiting the Dr often and it wasn’t until July 31st of 2006 when she was at her weakest, she was admitted to the hospital and was in heart failure. She looked perfectly normal on the outside, but little did we know that on the inside, her body was slowing dying.

It wasn’t until she was admitted into the hospital and we found out that her blood pressure was dangerously high (running in the low 200’s). I will never forget overhearing the ER dr. telling the nurse to have the chaplain meet us in our room once we get settled. At first, I thought it was such a kind gesture of the Dr. and it wasn’t until much later we realized he had done that because he didn’t know if Ella was going to make it.

After about two weeks of testing and hearing lots of, “ we may never know what is wrong with her”, they found that she had a rare narrowing in her abdominal aorta and narrowings in her renal arteries going to her kidneys. Her left kidney was not functioning well at the time. Basically, what had happened is with the rare narrowing, her kidneys were not getting enough blood and they were telling her brain – we need more blood and that made her heart work overtime, which over time enlarged her heart and it was wearing out, that is how she ended up in heart failure. With meds, her heart began to get stronger and at 15 months old ( in Oct) she had her first surgery ( which saved her life). They opened up the narrowing to allow normal blood flow. She still needed blood pressure meds after surgery.

After her first surgery, she had other complications, which has resulted in several tests, gastro issues, vomiting issues, iron deficiency, continual blood flow issues to her kidneys. Unfortunately a blood clot developed in the graft that they placed to her left kidney, so her left kidney stopped working and as she grew the narrowing to the right kidney returned, so she needed a couple balloon procedures to that right renal artery.

After a two balloon procedures her right kidney stopped growing, so the Dr’s. decided that another route would be best. Continual ballooning of the renal artery would be too risky, so after much deliberation and a second opinion, another major surgery was put into play — an Auto kidney transplant for the right kidney and removal of the left kidney. This was the first time Riley had performed and auto kidney transplant on a child. What a stressful year. The surgeon felt it was best to have a match in place as a back up plan in case the surgery did not work. So, luckily, I was a match. I went through all the same testing as Ella did. The whole experience was very eye opening and humbling.

So, in October of 2011, Ella had surgery. When the surgeon first came out after surgery, he looked very nervous and fidgety. He had stated that he had used the

smallest suture that he had ever used and the surgery was much more complex once he got in there and he would like to never do that surgery again. Reassurring right? J I actually, really appreciated his candor and honestly. A half an hour later he returned with a completely different demeanor and stated that Ella’s ultrasound looked great and she was peeing buckets! He was so pleased. The surgery was a complete miracle, blessing and success. The several days following the surgery were challenging and difficult for Ella, but she overcame. Her body healed as the months went on and less then a year after surgery we were able to completely take her off her blood pressure meds — something her kidney dr. never thought we would be able to do. She is a little miracle!

Ella will always have follow up visits at Riley and we won’t know until she is done growing if she will need another surgery on her abdominal aorta and her surgeon said she will most likely need a regular kidney transplant sometime in her lifetime due to her kidney being under so much stress her whole life. But, we take each day as it comes and count each day as a blessing.

March 27, 2016 – Lexi Burpo

Lexi’s Riley Story:

Lexi is a spunky, outgoing, athletic, kind-hearted little girl. She is extremely active and loves to play soccer and do gymnastics! Lexi doesn’t know a stranger, and while she may try to come off as bashful when she first meets someone new, they are sure to be her new best friend within 5 minutes!! Lex is an extreme animal lover and even says she wants to be a zoo keeper when she grows up! Any movie with an animal in it, especially the Buddies movies, are guaranteed to be labeled as her favorites, next to Cinderella that is!

Lexi talks about her experience and surgery at Riley Children’s Hospital frequently, even though she was only 2 years old at the time, and understands how much the staff there helped her, especially Dr. Agostino! Because of this, she has grown a love for paying it forward and even has a lemonade stand & bake sale in the works.

In July of 2010, at 2 years old, Lexi literally woke up one day with a large mass under her chin. After nearly three months of testing without any answers, Lexi’s pediatrician & ear, nose, throat specialist referred her to Dr. Michael Agostino at Riley Children’s Hospital. After finally being diagnosed with an unknown bacterial infection, Dr. Agostino and his staff performed life-saving surgery to remove two of Lexi’s lymph nodes and skin, all of which were infected with the bacteria that was taking over Lexi’s tiny body. 3 years later, thanks to the staff at Riley, Lexi is now a healthy and thriving five-year-old little girl!!

March 20, 2016 – Merideth Brooks

My name is Merideth, I’m 17 and I have POTS. POTS is short for Postural Orthostatic Tachycardia Syndrome and it’s a malfunction of the autonomic nervous system in your brain, one of the leading POTS specialists in the country compares the symptoms to that of congestive heart failure. Your brain has to retrain itself to respond and react to almost all stimuli it interprets. I was diagnosed with POTS almost 4 years ago when I was involved in a cheerleading accident and fell 10 ft head first on a basketball gym floor. Over the past 4 years I have had to step back and learn how to adjust to a new means of living and put a lot of the things most teenagers my age are experiencing on hold. Because of this I’ve formed a tremendous amount of gratitude to everyone at Riley as they make up a majority of my “A team” that make it possible for me to walk today and not rely on a wheelchair, to speak in front of so many people about what it means to really value life, and to just in general be as much of a teenager as I can. They help me to keep my body stable while I tackle POTS, it’s not easy at all to fight something in your own body but they do their best to help and support me throughout my journey and it means the world. I can never put into words how much of a miracle Riley is for not only myself but so many others, to be able to stand among others and share the value of life is something I will always owe back to Riley. Dance Marathon is one of the most amazing things I will ever experience and I will forever get chills every time I attend one. I type this tonight in my own bed instead of a hospital bed and I cannot tell you enough how much that means to myself and my family because it hasn’t always been that way. What you all and so many others do is truly honorable.

March 13, 2016 – Jon Nugent

Jon’s Riley Story:

Jon Nugent was diagnosed with a rare brain cancer as a sixth grader in March of 2009 after experiencing seizures. His treatment through Riley Hospital for Children included surgery, chemotherapy and 13 proton therapy sessions. Jon also suffered a stroke, and faced a long recovery where he relearned to walk. Since completing his treatment, Jon now plays varsity soccer, and JV volleyball, and also finds time to join fundraising efforts including Riley Dance Marathons.

Jon is currently a junior in high school and he plays varsity soccer, manages girls basketball and track teams, raises funds for Pediatric Brain Tumor Foundation (over $22,000 to date) and collects Pop Tabs for Riley. He volunteers at school to help with any sport keepings books or running clock. He also works with Rachael Bazell, former Purdue featured twirler in her quest for Miss Indiana with her platform of finding a cure for cancer.

March 6, 2016 – Cassi Bacon

Cassi Nicole Bacon was born on August 21, 2004, although her anticipated due date was a week later.    The pregnancy went very well, and an ultrasound two weeks earlier had shown a baby girl who appeared to be perfectly healthy.     During the late afternoon of August 21, Saturday, I noticed that the baby wasn’t moving around as much as she usually did.  I could feel movement, but it seemed very slow.  It was unlike the energetic little baby that had been kicking around in the days before.   We decided to call our doctor and check with him about the recent change.  Thankfully, he was very proactive and suggested that I go to Lafayette Home Hospital for a stress test.  They determined that the baby was moving around, yet  I could not feel the movement.   More testing showed that her heart rate was not responding to stimulus as quickly as the doctor would have liked.  He decided that she needed to be delivered as quickly as possible and performed a C-section that night.  She was born around 1:00 am Sunday morning.

My older daughter had been born by C-section as well, so I knew what to expect.  It was apparent that something was wrong as soon as he lifted our baby girl from my womb.  I vividly remember hearing a nurse say, “Get the dad!” as the fear registered on my husband and they believed he was about to pass out.  Cassi was quickly passed off to the awaiting pediatrician without my catching a glimpse of her.  My doctor then said “The arm….is she okay?”  When the pediatrician responded, “We’re working on her”, fear gripped me as well.  Her apgar scores were low, and I knew that was not a good sign either.

She was  placed in the NICU and several specialists looked at her.  It’s very difficult to explain what her arm looked like at that point.  Each possible diagnosis was ruled out, and she was transported to Riley Hospital on Monday morning.   The fear and anxiety that my husband and I felt as we watched the Riley Transport Team pull away with our precious baby was overwhelming.

Upon arrival at Riley, she was taken directly to the NICU where there was a team of doctors waiting for us.  It didn’t take long for them to make a diagnosis.  Ultrasounds showed several blood clots had formed in Cassi’s neck area.  The largest of these, had completely stopped the flow of blood to her left arm and the arm tissue was simply dying due to the lack of oxygen.  Her right hand/arm was also starting to be affected.  I remember my older daughter saying, “It looks like her fingernails are painted purple.”  Sadly, it did.  This meant her right arm was at risk as well. They thought the blood clots probably started forming within the 18 hours before her birth.  We had a diagnosis, but no reason to explain the cause.  The treatment plan was to feed her through a feeding tube because they wanted to rule out blood clots elsewhere that could make digestion dangerous.  They also needed to keep her left arm sterile and give her the drug Heparin to thin her blood in hopes that  the blood would flow faster and stop/dissolve  the other clots.  She responded to the treatment, but I can still remember the day that the doctor told us that she would not be able to keep her left arm. It was too badly damaged and would have to be amputated.    Hearing that news would seem to be the worst scenario possible, but after the fear of losing our precious little girl, our only questions was,  “When?  Let’s do it and get our baby home.”

That is when the wait began.   Because Cassi needed the blood thinner to take care of the other clots, they didn’t want to perform the surgery right away.  We spent the next week and a half waiting and watching our little girl become healthy enough to tolerate the surgery.  Thankfully, we were able to start feeding her with a bottle after the first couple of days.

My husband and I stayed at the Ronald McDonald House after the second night and we relied on family members to take care of our older daughter, Kayla, who was nine years old at the time.  Kayla was brought to the hospital about every other night for visits.  We spent every day sitting in the NICU holding our baby and observing what an amazing place Riley Hospital is.   It was incredibly hard to leave her at night, but the nurses were so understanding and came to expect my 2 am phone call to check on my baby girl!  Nurses sat with us, hugged us, brought me a foot stool to rest my swollen feet upon, and patiently explained everything to both us and our older, inquisitive daughter.  The residents and fellow doctors were all amazingly patient with us as we asked question after question.

As the day of surgery got closer, our fears began to escalate.  With our family and pastors around us, we prayed for Cassi to have a successful surgery and a speedy recovery.

Our prayers were answered!  She came through the surgery fine and was only in recovery for a short time.  The NICU staff was amazed to see us walk back into their unit.  The next challenge came when the bandages came off and we saw her ‘little arm’.   As we prepared to go home, we learned how to change bandages, clean surgical wounds, and give injections.  We were told that Cassi would need daily injections of Lovenox for 6 months so that all the blood clots would be gone.

We made many trips back to Riley during the years of 2004 and 2005.  There were blood tests to check appropriate levels and follow-ups with the plastic surgeon who did the amputation.  In August 2005, following her first birthday, she had her last blood test that showed all blood levels were normal and functioning well.  The doctor was ready to release her from his care.  The cause of the blood clots was still unknown, and we were told that we would probably never know the cause.

Unfortunately, we needed the service of Riley again when Cassi was in kindergarten.   She had developed a cyst on the end of her little arm, which we knew nothing about until she bumped into a rock wall at her school.  The cyst ruptured and was actually leaking fluid out of her arm.  She had to return to the plastic surgeon and have a second surgery to remove the end of the bone and clean out the debris from the cyst.  That surgery was outpatient, and once again, everyone at Riley was incredible.

Today, Cassi is a busy nine year old girl and loves to be involved!   She enjoys sports and has played soccer, basketball, and volleyball.  She is currently swimming with our local swim club and was recently chosen to be a Student Council Rep for her third grade class.  Having one arm has really not slowed her down much.  She rides her bike with ease and even attempted the zip line at her church camp last summer!   She has had two prosthesis and is currently in the fitting process to get a new prosthesis with an electric hand.  Her willingness to try new things is an inspiration to us.  She is truly amazing and does not let her physical challenge slow her down.

We are so thankful that we live close to Riley and were able to get the help that we needed for our precious baby girl.  Our family will be forever grateful for the wonderful doctors, nurses, and all the support staff at Riley.

Bacon Family Information:

Gary, Rhonda, Kayla and Cassi

We have been married for 25 years and are the parents of two beautiful daughters.   My husband and I are both graduates of Purdue University with degrees in Education.  Gary taught Algebra for most of his career and has coached junior high and high school basketball and football.  He recently changed positions and is now a Technology Coordinator at the middle school in Crawfordsville. I am an elementary teacher and presently teach 5th grade in Crawfordsville.  Our older daughter, Kayla, is a 2013 graduate of Crawfordsville High School and is a freshman at Purdue majoring in nursing. The Riley nurses made a huge influence on Kayla during Cassi’s stay, and that is one thing that has inspired her to pursue a degree in nursing.    We enjoy camping and trips to the beach in our free time.