Sarah Foody

Emily was born June 9 2012, a normal healthy baby. She weighed 7lb2oz and was 19.5 inches long. At 3 weeks old she started vomiting and red marks started appearing on her skin. At 5 weeks old she was vomiting so bad, she was having all sorts of tests done, barium studies, ultrasound and bloodwork. All came back “”normal””. They put her on special puke proof formula, but she still vomited. At 8 weeks of age her pediatrician told us there’s was nothing more she could do for her and she sent her to the hospital. Emily was admitted and they started a stomach tube to help relieve her bloated abdomen along with a ton of other tests. They told us they didn’t know what was wrong with her that the tests show something wrong with her intestines…maybe???but prepare ourselves for surgery. So the next morning they ambulance transported her to Riley…and so our journey begins. August 2012, 8 weeks old, we arrive at Riley. Our admitting doctor, Dr. West comes into our room and says you want the good news or bad? She tells us Emily won’t be having surgery, but her liver is taking up 75% of her abdomen and compromising all her other organs. She has Hepatichemangiomaendothilioma. (Say that 10 times fast…lol). That is abnormal rapid growing blood vessel tumors. Emily was admitted and we spent a little over 2 weeks at Riley. She came home on 9 different medications that she took every 2 hours. She also could only eat 2oz every 2 hours because her liver was pushing on her tummy. The live tumors made her thyroid not normal, so she was hypothyroid. Emily was in and out of Riley several times over the next few months. In Nov. 2012 I noticed she was changing. Her eyes, forehead and soft spot looked different. I questioned her liver specialist at an appt, and she agreed she had changed. She left us in a room came back and told us our appt. with her was over and that a neurologist was waiting for us to look at Emily. On the way I told Gary this is bad, she knows something, you don’t get into a Riley neurologist in 5 minutes. We went and saw the neurologist and she agreed she didn’t like the way her soft spot or eyes were looking. She sent us to an eye specialist to check for fluid behind Emily’s eye called papadima.  The eye doctor saw fluid behind Emily’s eyes and with us in the room he called the neurologist to report his findings. We went home and waited. In Dec. 2012, she was 6 months old. A few days later on Dec 20th I was at work and I get a phone call from a doctor at Riley. She says, “Hi Mrs. Newcomb my name is Dr. Jodi Smith. Iam a neurosurgeon and I’ve been presented your daughters case and we have formed a team and your daughter will be admitted to Riley tomorrow to prepare her for brain surgery, she has a severe condition called Hydrocephalus. If we don’t help her, she can go blind and die.” My heart sank and I just sank to the floor at my workplace sobbing holding the phone. I couldn’t even talk to the doctor anymore. I had no words, just tears and a sudden onset of fear. I called my husband and family. We packed our bags that night and spent time as a family. We let the girls open one present. We were supposed to be going to meeting Santa for the 1st time but didn’t make it. We drove in the morning to Riley in a terrible blizzard. They took us to our room in the Simon tower and we met with all kinds of doctors and she had a ton of tests done. They told us they will be drilling 2 holes into Emily’s skull and placing bilateral “”brain drains”” and laser leveling a machine to measure the output of the cerebral spinal fluid before they make the decision whether they to need to place a shunt. Surgery went well. They drained a ton of fluid After recovery Emily had a cat scan and then they let me carry her back to our room. I placed her in her bed and Gary walked up to her and he yells at me “what’s wrong with her”. At that point I had no clue because she was just looking at me. Emily went downhill very quickly and began having seizure after seizure, she went code blue on them, they brought in the crash cart and started injecting her with a ton of medicines and intubated her. I can’t even tell you how many nurses and doctors were in that room working on her. There were even nurses up inside her crib with her bagging her with oxygen. The chaplain and social worker arrived also trying to console us as they save our baby girl. They needed to get her to the ICU, they didn’t even hesitate. The nurse stayed in her crib bagging her and off we went, running through the halls to the ICU, they didn’t even take “secret” back hallways as that would have taken longer, they went straight through the main lobby of Simon tower, it was like the parting of the sea and a crazy movie scene. Nurses running ahead yelling at everyone to get out of the way, nurses yelling vitals, doctors yelling what to do and us running helplessly after our daughter. We arrive in ICU and they began hooking her to machines from head to toe. It took Emily 3 days to breath on her own and on Christmas Eve we were released from ICU and headed back up to Simon tower to the brain floor.  We spent our 1st Christmas as a family at Riley with Emily. She was out of it and had not a clue what was happening, but family stuck together. The doctor came in and told us that she was draining to much fluid and that she would need a shunt placed on Dec. 26th. Due to Emily’s large liver and tumors, the doctor had to have a g.i./liver doctor in the operating room with her when they placed her shunt to drain into her abdomen. It was a 5-hour surgery. Emily recovered well and woke up uneventfully this time. We took Emily home on New Year’s Eve. The shunt has been a long road. Emily has had 5 total brain surgeries as the shunt kept failing. There is no cure for hydrocephalus and when a shunt fails, she requires emergency brain surgery.  
In Dec. 2014 Emily began having seizures again and it has been a battle trying to keep her seizure free. She is on several different seizure medicines and still having break through seizures. In July 2015, we just celebrated Emily’s 1-year shunt anniversary of no surgeries. But then 1 day after celebrating Emily got really sick and we took her to the ER. They tell us her liver is highly inflamed for some reason. One of the liver values normal range is around 53 and Emily’s was at 873. So they admitted her and trying to control her pain and talk with her doctors at Riley. The next day we were ambulance transported again to Riley as Riley doctors wanted her in their care because her liver values were off the charts and Emily was not well. They decided it was one of her seizure medicines killing off her liver. They stopped that seizure medicine and the next morning her values dropped by half. We were at Riley for 8 days that visit. While we were there Emily was blessed with the hand foot and mouth virus…ug. Now she is super itchy, and her hands and feet are swollen. Came home with different seizure medicine and on the mend again.  Emily recovered and was doing well. Still having the occasional break through seizures but she is our toddler monster. It’s been a long journey and it’s not over yet. Feb. 2017 we got a diagnosis that Emily has Noonan like syndrome with loose hair anagen (Mazzanti syndrome). It’s a rare genetic disorder and the doctors tell us it only affects about 50 people in the world. There’s no cure for her syndrome. There’s very little research. Having the syndrome diagnosis for Emily will hopefully one day give us answers that we have been searching for and help us guide her into her future. 

Nov. 2017 they have found new research that some people with her syndrome are at risk for Moyamoya disease, abnormal blood vessels in the brain that increase her risk of having a stroke. She had a MRA (angiograph of her brain) done in January 2018, thankfully she does not have moyamoya disease. 

Also in Nov we felt that Emily just hasn’t been herself so the doctor did a bloodwork up and found that her thyroid is messed up again and that her kidneys are not working correctly now.  So back on thyroid medicine! We went and saw a nephrologist and he diagnosed her with Renal acidosis. They are unsure as to why she has this, and she’s been on and off kidney medicine. She has bloodwork drawn every 2 weeks to check values.  

Emily still is battling seizures on a daily basis and she still has the kidney doctor completely stumped. She also has had a busy summer of testing to figure out where her seizures are coming from. They have determined after a MRI, cat scan, 5-day eeg test and another scan with dye that her seizures are coming from her left temperal lobe. We are now in the process to see what can be done to help her. The doctors have informed us that they want to remove the part of Emily’s brain where the seizures are triggering from. We are still in the decision process of this. Emily is also waiting to be matched with a seizure alert dog. 

Emily has a lot going on inside her tiny body, but she is a true inspiration and is happy all the time. We call her our ticking time bomb because 1 day she is fine and in a blink of an eye she’s the sickest little girl and off to Riley we go. 

It’s been an endless journey. Emily has been hospitalized at Riley for about 75 total days and she has had well over 100 outpatient visits. I lost count after 100….  Emily has 12 different doctors.

Cohen was diagnosed with the rare Kawasaki disease on Tuesday 10/6/19 after being super sick with a high fever that wouldn’t go away, a rash all over his body, red eyes, red lips that were cracking, very lethargic and fussy, and was limping when he walked. We came to our local Urgent Care and he sent us straight to Riley ER because he was concerned for the possibility of him having Kawasaki disease. We got to ER and the doctors and labs confirmed the diagnoses of Kawasaki disease. We were admitted right away and were in the hospital until Saturday 10/12/2019. Cohen had multiple labs, chest x-ray, and an echo cardiogram on his heart to confirm the diagnosis. Cohen was then given a 10-12 hour infusion through his IV of IVIG. IVIG is thousands of people’s anitbodies (thank goodness for blood donors) and it helps with the immune system and it supposed to calm down the inflammation in the vessels of the body and heart. There is a 10 day window when they need to have this drug. Cohen was on day 4 which is amazing. Most kids are misdiagnosed. Treatment was rough, but Cohen got through. He had a great day the following day, but then about 22 hours after treatment he developed a high fever again (103.5). We then had to stay longer because he was on the radar for another treatment. They monitored him the rest of that day, night, and into the next day and thankfully Cohen did not spike another fever. We are at home now and Cohen has some lingering symptoms but those should go away with time. Kids with Kawasaki disease have a higher risk of heart disease so we will go back to Riley in 4-6 weeks for another echo and then he will have to have yearly  echos after that. This was by far the most emotional time I have had. Not only was I worried about Cohen, we didn’t get to see our other children while we were at Riley. I feel a lot of anxiety worrying about the future. Riley was amazing and the staff there were phenomenal. We felt very lucky to be in their care.

Hi my name is Joseph Peters and this is my Riley story! First, me and my brother were mowing the lawn and I was riding on the deck of the mower. We went over a mole hole and my leg went in front of the mower and my leg went under! Minutes later the ambulance arrived! Next, I went to Saint Elizabeth in Lafayette then took a helicopter to Riley Children’s Hospital in Indianapolis. After that I had an immediate surgery. I needed to have my right leg amputated below the knee. I was all ready to go home and then I got a very high fever and got really sick. A nurse and a doctor figured it out in about a few days what was making me sick but then they figured out I had an infection in my leg. A couple weeks later I got a fever again and they found out I was allergic to one of the medicines. All the different doctors that came to visit me were very special, they saved my life. Five weeks and 4 and a half days later I was out of the hospital. I have had two surgeries since being in the hospital. The nurses, staff, and child life specialist helped  me to have fun during my stay at Riley. The rehab nurses and I had wheel chair races. One awesome nurse and I played uno all the time. The child life specialist made me feel more comfortable during the hard times, and helped me have fun! She brought me an Xbox to keep in my room. One day I got to squirt the nurses with water through syringes! Also I had dog therapy and music therapy! The dogs met me and I got to pet them on my bed and there were 4 different dogs that came to see me. Music therapy was when I get to listen to the guitar and the therapist sang some times too and once I got to play the guitar my self! My mom said that Riley is the Disney land of hospital for kids! Riley means a lot to our family, and we are very grateful for Riley supporters. My dad used to say we donated to Riley for the kids who needed it, even though I didn’t at the time. Now we donate to Riley because when I needed them most, everyone at Riley was there for me and gave me hope.

Hannah was born full term. I had a healthy pregnancy and there was nothing alarming on any of my ultrasounds. After delivery the nurses in the nursery noticed that Hannah appeared uncomfortable. After a quick lookover of her anatomy they decided to call in a specialist who recommended that we be transferred to Riley. Riley diagnosed Hannah with imperforate anus, a rare condition that affects the formation and development of the midline organs. We spent a total of 4.5 months in Riley while they completed corrective surgeries and monitored her feeding. One common side effect of this disorder is feeding issues. Hannah aspirated when she would nurse, so she originally had a nasal-gastric feeding tube placed. That was replaced with a g-tube (a tube surgically placed directly into the tummy) after she became old enough to pull out the NG tube. A few months after she turned one we passed the swallow test and went back to have surgery to take out and close the g-tube opening. We spent a few months afterwards returning to Riley for OT to learn how to properly feed and also to get her up to speed physically after spending a significant amount of her early life in a hospital bed. We love Riley and truly appreciate all they did for our girl! She’s now a happy, healthy 12 year old! She enjoys singing, dancing, arts & crafts, performance art, and traveling.

“When I was born I had 3 holes in my heart. When I was 9 months old, Mom and Dad and I moved from Illinois back to Indiana so I could get my heart fixed at Riley. I had surgery when I was 10 months old. The biggest hole in my heart was almost the size of a dime. When Mom and Dad came in to see me in the ICU, they uncovered me and saw that for the first time ever my toes were pink. My heart was working great!  

After 5 days in the hospital I got to go home. Life was great after my heart surgery. I grew, got a brother, started school and was loving life! Then when I was 7 years old I started getting sick a lot. One day Mom took me to the doctor for an ear infection. I got my favorite pink medicine and was ready to feel better. But I didn’t feel better. I kept getting sicker over that weekend. On Monday Mom took me back to the doctor to get my ear checked again. The doctor sent us to a hospital for blood work. Then she called and said we needed to go to Riley because my blood work was not good.  

In the ER at Riley they did another blood draw. I was not happy about this. I do NOT like needle sticks! A doctor came in and told us I was very sick and would have to stay at the hospital. After more tests the next day, we found out that I had leukemia. I started chemo the next day. My treatment lasted for 26 months. Over those 26 months I spent 30 nights at Riley. I had 4 bone marrow aspirations, 20 spinal taps, lots of blood transfusions and more needle sticks than anyone can count. I took over three thousand pills.  

In February 2007, I took my last chemo pill ever!! In February 2012, I hit the 5-year off treatment mark, which means I am officially cured of my cancer! Thank you for dancing and raising money for Riley Hospital to help my friends and me!”

Carter is now a healthy 14 year old who likes sports, running, and video games, but when he was five he faced severe health risks after an H1N1 infection. Riley saved Carter from respiratory failure and the other life-threatening conditions caused by the infection, so now Carter enjoys giving back to Riley in any way he can. He has raised over $19,000 for Riley, and this year as a freshman at Harrison High School, he helped put on their dance marathon this past Friday! Learn more about Carter by reading his story as told by his mom:

“On October 7, after dealing with a high fever and cough for a couple of days we decided to take our 5-year-old son Carter to the doctor.  Carter was immediately seen, given a breathing treatment and then had a few other tests done.  The doctor said that he knew before even doing the tests that he would be admitting Carter to the hospital.  Carter was having a lot of trouble breathing and after testing positive for H1N1 the doctor feared that he may have a secondary bacterial pneumonia infection. 
We made our way to Home Hospital on the East side of town.  Over the next 12 hours, Carter’s condition quickly became much worse and we knew something more had to be done.  The doctor came to the hospital, did his examination and then said “Your son isn’t going to make it.  He needs more than what we can give him.  A helicopter will be here in 20 minutes to transport him to Riley Hospital in Indianapolis.”   

The doctor feared that Carter had worked so hard to breathe for hours that there was a strong possibility he could stop breathing and need to be intubated and need further assistance.  The hospitals here in Lafayette are not equipped to handle severe situations like this. 

Carter was placed on the helicopter and flown immediately to Riley.  My husband and I sped as fast as we could to the hospital to meet him there.  Carter was admitted to the PICU and the doctors worked tirelessly to find the right combination of meds and breathing machines to help him.   

The doctors and nurses at Riley were very helpful with our stay there. The doctors were very knowledgeable, but explained things in my terms so that I would understand.  The nurses were very helpful in many ways.  I also have a 12-year-old and an 8-year-old.  I was still nursing my youngest and they took no time at all to provide me with bottles to store my breast milk in.   

Carter is committed to giving back to Riley Hospital and helping families currently there. Over the past six years, Carter has raised over $19,000 for Riley. Thank you for all your support!!!!” 

Cecil is one of the most energetic kids you’ll ever meet! He and his brother Hugo enjoy coming to PUDM events, especially Grill Out Chill Out. Cecil went through 4 rounds of chemotherapy to treat his Neuroblastoma before he even turned one year old. Now, Cecil is cancer free and loves playing piano, dancing, reading, maps, drawing comics, and books. Here is his story as told by his parents:”Cecil was born in the summer of 2013. When he was 3 months old we began noticing some breathing problems. He would wheeze a lot of the time. His pediatrician gave him some antibiotics to try, and then some others, and then a Nebulizer with several different medications, and on it went with no impact. We thought it might be something that would clear up when the weather warmed up, but a stint in Florida showed no change either. At the end of February, 2014, he started frequently having a very red, but cold, right arm and hand. His pediatrician could come up with no explanation, and several others weighed in also, all clueless. She suggested getting an x-ray to check things out, but as we pay for all medical expenses out of pocket, and the hand didn’t seem to ‘bother’ Cecil, we forego pursuing it further. 

On March 3, 2014, Cecil began coughing and wheezing really badly. He was literally struggling to breath. Nothing seemed to help him, and we kept watch over him for most of the night to make sure he continued breathing. We should’ve rushed him into the hospital then, but, we didn’t. In the morning, his pediatrician, after several failed attempts at trying to relieve him with a Nebulizer treatment, sent him to the hospital. The local hospital slowly got an IV started, tried Nebulizer treatments (Again!), and finally got an X-Ray. As soon as they got those results, they called for a Lifeline to Riley Hospital. They would not tell us what was going on. One nurse said they thought he might have pneumonia.  

When we arrived at Riley, they told us that they initially thought he might have Tuberculosis, and had him isolated because of that. However, what he did have was a large tumor, and they were not sure what it was. The tumor was blocking off his trachea, which was only open 1 mm at that point. His little body had grown around the tumor; his heart was displaced, his trachea was moved to the side. They could do nothing to help him until they could identify what kind of tumor it was. The doctor in the PICU told us he wasn’t sure if Cecil would make it through the night. It was the scariest night of our life. 

On March 5 they took a biopsy of the tumor, but they could not put him under because of his compressed trachea. Three miserable days later we finally got the results: it was cancer: Neuroblastoma, originating from his spine, and filling his chest cavity. That same day they started him on chemotherapy.  

We went through 4 rounds of chemotherapy with Cecil between the ages of 7 and 9 months.  Losing hair, throwing up all his meals, dipping down below 3% for weight, hooking him up to a pump for medication everyday to try to help his counts stay up. I was running back down to Riley at least once a week for one thing or another; another dose of chemo, a clogged PICC line, a stitch coming out… They got our hopes up after 2 rounds of chemo that they might be able to operate, but then they ended up wanting him to go through 2 more. They initially couldn’t operate because the tumor was so large, and was entwined with so many organs and nerves and arteries.  

May 27, 2014 Cecil had open heart surgery to remove the tumor. Somehow I had enough faith in the Doctors that I really wasn’t panicked all day. They got the tumor out and in the end didn’t have to sacrifice any nerves to do it! We were at Riley for about a week that time. Our longest solid stint at Riley was 3 weeks, and the McDonald rooms are such a blessing.  

We are so extremely blessed to now have a CANCER FREE, happy little boy. First Steps helped us out to get him back on track with his physical development; as we had an immobile 1 year old when this was all over.  

On June 9th 2015, we were blessed with another baby boy named Hugo. He is healthy and full of smiles! 

Nowadays, you can find Cecil on the dance floor or sitting at a piano. He’s got some killer moves and loves to show off! He has annual checkups at Riley to watch his growth patterns and to check for side effects of chemo. We are so grateful to have two healthy boys who fill our life with so much joy!”

Riley, 17 years old and on her 15th dance marathon, enjoys gymnastics and playing the saxophone. She goes to a lot of dance marathons across Indiana and is basically a pro at this point. She loves sharing her story and meeting other people impacted by Riley Hospital for Children. Here is her story as told by her mom:

“I found out I was pregnant just a couple of weeks after 9/11.  My doctor set my due date as  June 6, 2002.  I was worried about terrorism affecting my pregnancy.  Prematurity never crossed my mind. 

 I was told that I would be on hospital bedrest for the next 15 weeks.  I had a seizure within an hour of getting to the hospital but they were able to get my blood pressure under control with medication. 
 
Two days later, my condition had worsened and I was diagnosed with HELLP Syndrome.  At this point there was obvious discussion of having to deliver our baby early and I was transferred downtown to Indiana University Hospital and their OBICU department.  We were hoping to make it to 32 weeks at this point, still two months shy of full term. 
 
The next day it became obvious that all of our goals were out of reach.  My condition became critical as I lost function of my central nervous system, kidneys, liver and sight in one eye.  The decision was made by our medical team to deliver immediately via emergency c-section to give me and our little girl the best chance at survival.  At this point, it was healthier for her outside my body than inside.  A doctor from Riley Hospital came to visit us and prepare us for our new reality.  We were told that if she survived birth, she would have about a fifty percent chance of going home.  He did, however, tell us that there was a 90% chance that she would experience a moderate to severe handicap.  I was only 25 weeks and five days into my pregnancy. 
 
At 1:29AM on  March 2, 2002, Riley Marie Lesh entered the world.  It was not the beautiful family moment that we had envisioned.  Instead, I heard the door to the operating room open and close.  Rick quietly whispered that she was out. My surgery lasted another thirty minutes or so and by the time I made it to recovery, she was stable and ready for transfer to Riley.  They brought her to me in an isolette and lowered it so I could see her tiny body, completely covered in wires.  They told us that she weighed 26 ounces and was 13″ long. 
 
Rick went with her to Riley.  She suffered some complications on the transfer.  One of her lines caused her heart to beat irregularly and she lost blood flow to her leg.  When Rick walked into her module, two doctors were leaning over her, trying to rub it back to life.  They escorted him down to the NICU family room until they could get her stabilized again. 
 
He spent the next 24 hours switching between Riley and University Hospital, bringing me pictures and at one point, telling me that he had briefly gotten to hold her in his hands while they changed the blankets in her isolette.   Finally, I was able to make the trip to Riley to see her for myself.  Our first visit was much too short.  I touched her tiny back for a handful of minutes before my nurse told me it was time to go back.  And her body was too sensitive for us to do anything other than rest a finger on her.   
 
We had no choice but to take each day at a time, and some days, it felt like we took each second at a time.  At two weeks old, she had surgery to repair a duct in her heart that wasn’t closing on its own.  That surgery saved her life. Before the surgery, she was changing ventilators every hour or so in attempt to keep her lungs from collapsing or over-inflating.  She was given paralytic drugs to keep her still and let her body try to heal.   
 
The surgery was a success and she really showed her fighting spirit.  She was awake just hours after the surgery, as opposed to the predictions we were given.   A week after that surgery, we were allowed to hold her for the first time.   
 
The next few weeks were a roller coaster of good news and scary news.  She was getting bigger and gaining weight, but struggled with bad lungs and feeding issues.  It was finally decided that she would go home on oxygen and a feeding tube.  There were daily lessons on parenting, as well as laughter, tears and the sadness of watching other babies go home while we waited for our turn.  Even worse was watching and attempting to comfort parents whose babies didn’t get to go home.  
 
Finally after 90 days in the NICU, we were allowed to take her home.  It was May 31, a week or so before her due date.  A nurse had colored a Winnie the Pooh picture and hung it on her crib.  It said, “Hip Hip Hooray, Riley gets to go home today.” 
 
It was amazing to walk out of the hospital and let her experience the feel of a breeze on her cheek and the sounds of cars and nature for the first time.  It was snowing the day she was born and it was warm and sunny the day we took her home.   
 
We continued to visit Riley on a sometimes daily and weekly basis, until eventually we were only there monthly.  We also had therapist come to the house three days a week to help her learn how to do the things that typical babies do on their own.  When she was one old adjusted, she was able to discontinue her therapies.  When she was 18 months old, she graduated from developmental pediatrics.   

 We owe her survival to our doctors and nurses at Riley, to God and to Riley herself…and honestly, a little bit to luck.   
 
Riley spends her time out of school at gymnastics practice, reading, playing with friends, wrestling with her two kittens or going to dance marathons.”

Kaylie is the oldest of four siblings, three of which have been treated at Riley. She is now 14 years old and loves running, art, singing, and llamas! Kaylie did a great job singing at the Riley Kid Talent Show at Ball State University’s Dance Marathon back in February of this year. Kaylie and the entire Phillips family have been deeply impacted by Riley, and you can learn more about them by reading their story as told by their mom:

“For years, I had the feeling there was something wrong with my daughter, Kaylie. As Kaylie grew through her toddler and preschool years, she had a hard time walking properly, would fall often and was never fully potty-trained. Her pediatrician said Kaylie was fine, but I knew my daughter had been born with a deep sacral dimple—an indentation in the skin on her lower back—but I was reassured when doctors couldn’t find any related problems. We then saw an orthopedic surgeon who said she “would grow out it.” 

It wasn’t until Kaylie’s younger brother, Landon, developed health problems of his own that our family found answers that would ultimately help three of our kiddos. At Riley Hospital, Pediatric Neurosurgeon Jodi Smith, M.D., began treating Landon for Chiari malformation, a condition where brain tissue protrudes from the base of the skull down into the spinal column. She asked if any of his siblings had any unexplained health problems. After hearing about Kaylie, Dr. Smith immediately recommended an MRI. Dr. Smith discovered that Kaylie had tethered spinal cord syndrome, which caused her spinal cord to be pulled tightly, restricting nerves. Riley Pediatric Urology Nurse Practitioner Shelly King confirmed that Kaylie’s bladder problems were related. Dr. Smith performed surgery two days later to release the tethered cord.  

Soon after Kaylie’s problems were discovered, our youngest son, Hudson, was diagnosed with similar tethered cord problems. In November of 2017, Riley genetics diagnosed him with Ehlers-Danlos Syndrome. We regularly make trips down to Riley for Kaylie, Hudson and Landon. The drive is long, but well worth it because the doctors listen. They genuinely care about each family. Kaylie wasn’t even Dr. Smith’s patient yet and she helped guide us to the diagnosis she needed. 

The Child Life Specialists for make each visit enjoyable. They keep the kids calm in normal scary situations. When they are going under for MRIs or having an urodynamic study done that’s invasive, they are there for them. 

Kaylie can now run, ride a bicycle and share her story at Riley Dance Marathons. She also raised $100 for Riley through “Kaylie’s Cupcakes,” where she assisted in making strawberry cupcakes and turned wrappers into red wagons. Our family will continue to give back to the hospital because it gave so much hope to us. We’re so thankful that our family can receive treatment at Riley. Without them, our kids wouldn’t be where they are today!”

Michael is now 19 years old, but he has been impacted by Riley since he was just two months old. Since Michael has cerebral palsy, him and his family have had to take on some extra tasks and obstacles that most families do not have to face. With the incredible care at Riley, however, the Holcombe’s believe they have a great support system and a medical team who truly listens and cares about the family’s needs. Michael is a Colts and Jacksonville Jaguars fan, and he likes painting, going to police shows, and hanging out with his dogs. Here is his story as told by his parents:

Our Riley Story started in January 2000, as Michael turned 2 months old. After being deeply involved with Riley for over 17 years, you can imagine that our Story is a vast one.  Michael has had six surgeries. His inpatient stays are too numerous to count. We would often boast that he has stayed on every floor and every wing of the hospital. Mom knew all the shortcuts to where we were going. We even knew where the best parent showers were before all the rooms were remodeled to include family facilities. He has stayed in each of the ICU units, one for over a month. He would visit to the ER, Physical, Speech and Occupational Therapies, Wheelchair Clinic, Infant Clinic then the Cerebral Palsy Clinic, Neurology, Orthopedics,, Urology,  Pulmonology, Dental and Ophthalmology. As you can imagine in those early years Riley became our second home.

God has blessed us with Michael’s improved health over the past few years.  But Riley still is our home away from home.  Our “Go To” place where we know Michael will get the best of care and that we as a family will be respected. Our philosophy from the very beginning regarding the medical field has been  “If you don’t play nice, you don’t play at all!”  We, Michael’s parents…and his brothers, make the rules and direct his care. The doctors understand that they are our vehicle to getting that care. At Riley, they believe that the family of a child in their care is the best and most important part of a child’s tract to wellness. The family knows the child. They know what will work best for that child. The doctors see the child only for a few minutes…even when they are inpatient. The doctors have just a small view of the child’s condition. It is the family that sees the child daily, knows the symptoms and knows what works best for the child and the rest of the family.

As a teaching hospital, Riley teaches their students to listen to the parents. Listen to their concerns and their opinions on the child’s treatment plan. This is unusual in the medical field, although a lot of children’s hospitals are taking Riley’s lead and are realizing it is important to include the family in their child’s medical plan.

You all know, I think by now, that Riley is one of the premier children’s hospitals in the country. This is something to be incredibly proud of. The care that children receive at Riley is second to none! We are so blessed in the fact that Riley is in our backyard! As a matter of fact, our family in Michigan has repeatedly asked us to move back home to be close to them but we have refuse to because Riley is only 40 minutes away from us now. Yes, there are a few fantastic children’s hospitals in Michigan but they are not RILEY!

Probably the most important part of our Riley experience is the way our family feels at Riley. We (all of us: Mom, Dad, brothers, and Michael) are at home at Riley. All employees at Riley strive to welcome families and patients and treat them with RESPECT and LOVE. Over the years, we have made many friends at Riley. We feel comfortable and at home. We can relax in the fact that Michael will get the best care possible and that we will be cared for in the process. Brian and Eric know that their brother has the best doctors for him and as a result have less anxiety. The boys have learned to be huge and powerful advocates for Michael as a result of the fact that the staff listens to their concerns.

Lastly, Michael knows that he will be cared for at Riley. We have had the need to go to other hospitals that were closer to home. Hospitals that, unfortunately, didn’t have the slightest idea how to care for him because they don’t usually care for kids with all of Michael’s complicated conditions. Michael knows the difference in a staff that is not confident in what they are providing him. He will be very agitated and express his frustration and fear. We have had to use these hospitals to stabilize him for the trip to Riley. Michael has been known to cry from the time he gets to the other hospitals and the entire ambulance ride. However, you can visibly see him relax as soon as we pull into the ambulance bay at Riley. He knows he is safe there. He knows he will get better there. He knows that Riley is his “home away from home”. That feeling is “Priceless!!”

Our entire family wants to thank each of you for your dedication and hard work to raise money to allow Riley to continue this quality of care for EVERY child that needs it. Riley doesn’t take government money (grants or subsidies) and your donations fill the gap between costs and what insurance pays. Your time, effort, and money is SO important to our family. We wouldn’t be where we are without YOU! Michael wouldn’t be the happy, loving, smiling young man that he is without YOU! For that we are eternally grateful!