Riley Kid Of The Week

November 4th – Braden Tamosaitis

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Hi!  My name is Braden… I am seven years old, and I have a pretty cool story if you’d like to read about me!
I was born in March of 2005, and even before I was born, my parent’s knew that I had so many tough things ahead of me.  I was born with Spina Bifida, as well as Hydrocephalus and an Arnold Chiari II malformation.  In other words, things were really complicated from the start!  On top of all that, the doctor’s told my Mom and Dad that I probably wouldn’t even survive birth, and even if I did that I would have very little use of my lower body, and I’d have very little cognitive ability.
Boy were they wrong!  I like proving the docs wrong whenever I can, and I have had many chances to do just that.  In fact, I was so strong the day I was born, that I had my very first surgery when I was only a few hours old!  Then my second one the very next day!  Even though I am only seven years old, I have already had fifteen surgeries.  They have worked on so many parts of my body, that my Mom and Dad call me Superman, because I am a boy of steel!
Ever since the day I was born, I have been a Riley Kid.  That means that Riley Hospital is very special to me and my family, because I spend so much time there.  All of my surgeries except one has been there, and I am usually there at least twice a week for therapy.  As a matter of fact, I spend so much time there that I have made more friends than you could imagine!  It’s not just the doctors I like so much, but the nurses, Child Life specialists, receptionists, and even the people that help keep Riley clean!  One of my favorite things to do whenever I am at Riley is to visit the Safety Store… I was even the very first kid to be in the Safety Store after they remodeled it!  I also love when I am wheeling through the halls and I see so many people I know, and I have to say hi to every one of them!  It makes it hard to get to my appointments some times.
I love the new tower in the hospital, but one of the last surgeries I had to stay there for 37 days!  Of course, my Mom and Dad tell me it’s not so fun being at Riley so long, but I didn’t want to go home at all!  I like staying there because I have so many visitors, and I get room service!
When I’m not at Riley, I still love to do anything I can that is for Riley!  One of my very favorite things is to go to Dance Marathons!  Dance Marathons are great big parties to raise money for Riley Hospital.  They have them at colleges and high schools!  My very first one, and most favorite, was at Ball State University.  I had so much fun that night, and I will never forget it!  My parent’s came with me to share our Riley story, and they planned on only staying for a little bit, not the whole 12 hour marathon.  But, as usual, I had other ideas!  I had a blast with all the college kids playing with me, and my team (the orange one) gave me a great big bag of goodies, and followed me around all night!  I never got tired, even near the end which was at 3:00 the next morning!  They had a rave at the end where they turned off the lights, passed out glow sticks, and turned up the music really loud… IT WAS FUN!!!  I didn’t want to leave at the end when they announced the total of how much they raised for Riley, but my Mom and Dad made me!  When I went back to my kindergarten class at school on Monday, I loved telling my teacher about all my new college friends, and the college rave I went to… she kind of looked at me funny when I said that!
Since my first one, I have been to lots of Dance Marathons.  They have them all over the place.  I have been to Dance Marathons at Ball State, Butler, Purdue, Indiana University, UIndy, IUPUI, Indiana State, St. Mary’s, and one of my other favorites, Franklin Community High School with my buddy Evan!  In fact, I like Dance Marathons so much and we go to so many, that my Mom and Dad like to tell people that Dance Marathon is my sport!
During my last stay at Riley, my Mom brought in a beach ball for me to play with.  I had so much fun hitting it all over the room, and it didn’t hurt anything!  I would play with anyone who would hit the ball with me.  It was so much fun, my Dad went to the store and got me a few more, so I could have lots of them in my room to play with.  I would even have the doctors and nurses playing with me when they were supposed to be working!  I would throw the ball at them when they came in the room, and I even tried to throw it at them when they went by my room in the hallway!
I had so much fun with my beach balls!  One day, I saw one of the other patients on my unit that would pass by my room all the time, and sometimes she would stop and chat with me.  I told my Mom that I wanted to give her one of my beach balls.  The nurses were able to clean the ball and give it to her, so she could have fun too!  I like doing that so much that I wanted to give one to the little boy in the room next to mine too.  Then, I made my dad go to the store and buy lots more beach balls to give to the other kids on my unit at Riley!
When I finally got home after my surgery, we had a big party at my house.  I invited everyone that came to visit me when I was in the hospital… but I told them they had to bring me beach balls so I could donate them to Riley Hospital for all the other kids!  I wasn’t sure if it would work, but it did and we gathered up almost 150 beach balls for Riley!  I had so much fun doing that, that I told my Mom and Dad I wanted to do it again and again, so they are helping me get more beach balls to donate.  I can’t wait!!!

October 28th – Makenna and Maison Gibson

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Makenna’s Riley Story: 
 
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 young girl who loves life and her brothers. 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.  
 
Maison’s Riley Story: 
 
We found out we were pregnant with Maison at Makenna’s 1st birthday party. We were very excited but very scared. Because of Makenna’s preterm birth I was followed very closely. At 13 weeks I had a detailed ultrasound, which raised some red flags to our specialist. At 17 weeks we had an amniocentesis and at 19 weeks were told Maison had Down syndrome and an inversion in his number 2 chromosomes. Basically his number 2 chromosomes split in half, flipped and then re fused back to gather. They had no idea what this would mean and warned us that he could spontaneously abort at anytime during the pregnancy. We were hopeful he would make it to term and be born healthy.  
 
Maison was born on time and weighed 5 pounds 15 pounces, the same weight Makenna was discharged home at and the same weight of Mom Traci and Grandma Debby. We think that’s a really cool thing!! Maison was treated at the special care nursery at University Hospital connected to Riley due to his low heart rate and oxygen needs. He came home about a week later on oxygen and eating from a bottle. Over the next few months Maison underwent sleep studies and monitoring on his oxygen. After a few months he came off the oxygen and was really very healthy. We have been so lucky with his health and feel very blessed. Maison is full of energy and has a personality that glows!!!!!  

October 21st – Diana Overman

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Diana has been going to riley since she was 6 months old. She has had eye straightening surgery, tendons tightened and lengthened, and numerous neurosurgeries.  21 surgeries in all at Riley. Her only seizure was at Riley. She spent 7.5 weeks straight at Riley 5 years ago, after having spent most of October in Lutheran Hospital. She event spent Christmas at Riley, and Santa was able to find her.
Diana will be named a 2014 Riley champion the weekend of PUDM. She wants to use her title to show other girls that have a disability that a wheelchair will not slow her down. She was thyroid cancer and has been battle it for 4 years. She is being seen at Cincinnati Children’s. She has Cerebral Palsy and left sided weakness. Diana was the first child under 10 to get a 4th treatment there too. We do not know what the future holds, but for now we celebrate today and our family being together.

Diana was a 28 weeks, 3 pound 2 ounce preemie and has had 45 surgeries in all at riley and Lutheran combined.

October 14th – Isabella Cruz

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Isabella was born with End-Stage Renal Disease due to renal dysplasia. While her mom was pregnant with her, it appeared she did not have any kidneys at all and doctors said she would only live for a few minutes. She is a miracle baby and has beaten all odds. She made it until she was 4 years old without dialysis! On June 12, 2013 I, her mother, was able to donate my kidney to Isabella. It was a scary but miraculous day and she is now thriving! We love living back in Indiana and are so thankful we made the decisions to transfer her care to Riley.
Not even 2 weeks after her operation, Isabella went home and was playing, running and having fun like nothing ever happened. And the best part is for the first time in her life, she has normal kidney function!
Riley saved Isabella from dialysis and ultimately saved her life. Her quality of life will be so much better now and she can develop and grow as a normal child would. Thank you for all the time and work that you put in. It can never be said enough but who knows where our family would be without Riley and so thank you for spending your time raising money for the hospital that helped our little girl.

September 30th – Leigha Scott

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Leigha was always healthy. Never had the flu, just a minor cold here and there since birth. She was always full of energy!

On March 23rd, 2014 Leigha woke up sick. We just thought it was the flu. Two days later, her fever was still high and she woke up with bloody, blistered lips. I took her to the ER where they diagnosed her with stomatitis, flu, and say she was dehydrated. She was given 2 antibiotics to take. The next day, she was no better. In fact she was worse, and her hearing had become slightly decreased. I took her up to the ER, once again, and demanded an IV. They said everything looked fine and told us to keep giving her the antibiotics.
The next few days her hearing was becoming more and more decreased. Her lips were not healing, and she could barely eat. I watched my vibrant, normally upbeat, little girl dwindle down to nothing.

Sunday morning, March 30th, I rushed my Leigha back to the ER for a third time. Her tear ducts were extremely scanned over, that with the touch of a wash cloth they would bleed a little. Her poor lips were so swollen and bloody…and this time…her hearing was completely gone. My baby girl’s hearing was gone. She stood there crying “mommy I can’t hear you.” I lost it and immediately rushed her to the hospital.

The ER doctor took one look at her and immediately called for an ambulance to take her to Riley. He said it looked like a definite case of Kawasaki’s Disease. A very rare condition that causes inflammation in the walls of some blood vessels in the body, and can affect the heart if not treated soon.
She was rushed and admitted to Riley Hospital in the infectious disease unit, under the care of Dr. John Christensen, director of the Ryan White Center for Infectious Disease.
She was losing weight rapidly, and was weak.

While there, Leigha had 2 spinals, 1 MRI, 2 CT Scans, 1 Echocardiogram, 1 sedated ABR, 1 non sedated ABR, steroid injections into the ears, and several blood work done.
No one had an answer. She was put in isolation for the first few days until they determined she did not have Kawasaki’s. All of her tests (besides her ABR’s that measure the brain stems response to sound) came back fine.

During her sedated ABR, the audiologist and Dr. Abideen Yekkini, ENT, came out and told us there was nothing. No response. Leigha had lost her hearing.
It was gone.
An extremely healthy child lost her hearing, and no one knows how or what caused it.
She was given steroid injections into her ears, and then placed on 5-day high dose IV steroids per request of the Neurology team.
Leigha’s team of specialist departments consisted of Infectious Disease, Pulmonary, ENT, Neurology, Dermatology, optometry, and audiology. After 8 days, Leigha was able to come home.

After a month, we noticed a small increase in her hearing in her right ear. She was fitted for hearing aids.
That worked for the right ear, but it was determined she was a candidate for the cochlear implant.
In December 2014, we met ENT Dr. Charles Yates, who after further review of tests, determined Leigha lost her hearing to Bacterial Meningitis.
She was implanted in January 2015, and activated a few weeks later in February. She is hearing like she was before! It’s amazing!
Regardless of not receiving answers for awhile, Riley Hospital got my daughter Leigha better, and healthy again…and most important…hearing again.
And for that, I thank them.

September 23rd – Andrew Kerrigan

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Andrew has a rare metabolic condition called LCHAD Deficiency (short for Long-chain 3 hyroxyacyl CoA Dehydrogense). This is a condition caused by an enzyme defect that keeps the body from breaking down fatty acids into energy.  LCHAD symptoms include feeding difficulties, lethargy, SIDS, hypoglycemia, hypotonia (poor muscle tone), liver problems, cardiomyopathy, and abnormalties in the retina.  Episodes can be triggered by fasting or illness such as viral infections and too much physical activity. 
Andrew was born at 32 weeks by emergency c-section due to medical complications caused by the LCHAD deficiency.  At the time Andrew was born, new-born screening did not test for LCHAD.  Now, LCHAD can be diagnosed on new-born screening; however, sometimes the screening process does not pick this up.  After five weeks in the NICU at a local hospital, Andrew was able to go home but continued having feeding issues. At five months when he started sleeping through the night, he became lethargic. He spent two weeks at the hospital and returned home without a diagnosis. Fortunately, his wonderful pediatrician knew something was not right and was prepared for Andrew’s return to the hospital a few days later. Andrew was lethargic again, and this time his blood sugars had dropped drastically. He was in critical condition. 
This is when a team of amazing doctors from Riley Children’s Hospital came to pick up Andrew in an oversized ambulance with an ER inside.  After 13 days at Riley and a skin biopsy confirmation, he was diagnosed with LCHAD. Andrew is now followed by Dr. Hainline and his metabolic team at Riley, as well as cardiology, ophthalmology, and ENT at Riley. With the help of Dr. Hainline, Andrew became involved in a research program involving a special oil from Germany that helps him break down fatty acids and use them for energy.  With a low fat diet regimen, medicines and continuous medical check-ups, Andrew is able to enjoy life just as much as anyone else!  
Our family is incredibly thankful that we are fortunate enough to have Riley Children’s Hospital so close to us and grateful for a local community that supports their efforts!

September 16th – Sneha Dave

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Sneha Dave is always in motion. Whether she’s on the tennis court, a hiking trail or volunteering her time, this 20-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. 
 
“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 honored Cory’s legacy by continuing to write the Crohn’s and Colitis Teen Times, a newsletter they started together. Sneha also co-founded the Crohn’s and Colitis Young Adults Network a non-profit for those with Crohn’s disease or ulcerative colitis.  “Sneha’s positive spirit, resilience and compassion for helping other patients made her an incredibly Riley Champion,” says Riley Child Life Specialist Amanda Banker. 
 
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. “Even a small positive change, one person at a time, would be a giant step for humanity.”  

September 9th- Olivia Lautzenhiser

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Olivia was born nine days after her due date in a small community hospital in Angola, Indiana.  She only weighed five pounds two ounces even though she was a full-term (overdue!) baby. 
 
When she was three hours old, she was taken by ambulance to a hospital in Fort Wayne, Indiana because our small hospital wasn’t equipped to take care of her.  She had a collapsed lung and was having trouble breathing. 
 
Sixteen hours after her birth, I was in a car on my way to the hospital where she was staying.  My husband was already there.  She was in the NICU, hooked up to monitors.  She was being given antibiotics via IV and she was beautiful.  She had a dimple in her chin and her right cheek.  She was feisty, she kept kicking her blankets off her legs.  She also had the sweetest, tiniest little cry.  She sounded like a kitten. 
 
She was finally released from Lutheran Hospital when she was eleven days old.  She came home on an apnea and heart monitor.  She came home and cried for the next six months.  She was finally diagnosed with reflux at four months old, at which point she only weighed ten pounds.  We started her on Zantac for the reflux and after two months on the medicine, she was like a new baby.  But she was still behind. 
 
She was floppy.  At nine months old, when most babies are sitting up and even crawling, Olivia couldn’t even lift her head.  I asked her pediatrician for an MRI.  I wanted to rule out CP.  The MRI came back fine.  We were told she had a beautiful brain. 
 
I kept looking because I knew something was wrong.  Our doctor was great at diagnosing ear infection or strep but he wasn’t very proactive about helping me with Olivia.  He kept telling me she was just delayed, that she’d catch up. 
 
I found a syndrome when she was about ten months old.  It fit so many of her symptoms.  She had low muscle tone, she had a cat cry at birth, she was globally delayed.  I mentioned this syndrome to her pediatrician and he told me there was no way she had this syndrome because she was too beautiful.  Yes.  He said that. 
 
When Olivia was a year old, I gave up on finding a diagnosis for her delays and asked for a referral to First Steps, Indiana’s early intervention program.  Olivia qualified for physical therapy, occupational therapy, speech therapy and developmental therapy. 
 
She finally started crawling at 17 months.  But at her two year check up with her regular pediatrician, I asked for a referral to Riley Hospital for Children.  Olivia still wasn’t walking and I worried something was really wrong with her.   
 
We met with Dr. Stanley, a developmental pediatrician at Riley when Olivia was two years and three months old.  This doctor was amazing.  She listened to me.  She checked my little girl and agreed, “There is something wrong with this baby.” 
 
When I mentioned that syndrome I’d found way back when Olivia was ten months old, Dr. Stanley said, “I doubt she has it.  She doesn’t have the typical facial features.  But let’s test her just to rule it out.” 
 
Two weeks later, the results were in.  Olivia has 5p- syndrome, also known as Cri du Chat.  This was the syndrome I’d found and suggested to her regular pediatrician, the one that Olivia is ‘too pretty’ to have.   
 
She’s missing part of her fifth chromosome.  She’s still got low muscle tone but she does gymnastics. She amazes me every single day and I thank Dr. Stanley and Riley hospital for Children for saving my sanity.  They treated me and Olivia like we mattered, like we were more than just a patient number. 
 
I thank all of you for all that you do to raise money for this amazing organization and for making these kids feel so special each time you encounter them. 

September 2nd – Brodie Welshan

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Today, Brodie is a strong, active 5-year-old little boy. He loves playing games and reading books. He plays with his doctor kit and tool set and loves spending time with his family. We are very happy now, but things were not always this easy.   
 
During Brodie’s 2-month wellness visit, the doctors detected a heart murmur and decided to send him for a cardio workup that same day. After his X-ray, EKG, and Echocardiogram, the doctors told us something we were not prepared for; Brodie was born with a congenital heart defect called an aortopulmonary window. This happens when there is a hole connecting the aorta and pulmonary vessels and can lead to pulmonary hypertension and heart failure.  They told us it is a very rare condition only occurring in 0.1% of all congenital heart defects. It was determined that Brodie needed to have open-heart surgery. 
 
We were sent to Advocate Christ Medical Center in Oak Lawn, Illinois. There, they told us we should put off surgery as long as possible because Brodie needed to be bigger and stronger to undergo this surgery. We immediately wanted a second opinion, and got a referral to see Dr. Jacqueline Maiers out of Riley. Even on the emergency list, we had to wait an entire week to see her. 
 
We saw Dr. Maiers on a Friday afternoon, on a Friday and the cardiovascular surgical office contacted us that following Monday. The surgery was scheduled for Tuesday, the very next day! It all happened very fast, but we are so grateful. The doctor’s at Riley told us that we could not wait to do the surgery and that Brodie was in very good hands. Brodie’s surgeon was Dr. Mark Turrentine. We were relieved when he told us that the procedure went well. We were out of the hospital only 6 days after his surgery.   
 
The level of care Brodie was given on the medical side of Riley was incredible and we are beyond thankful for all the medical staff because they truly did save his life. I feel that it is equally important to mention that not only was my son given the highest level of care, but also from a family they gave us the support we needed. While we were there, we were offered a room in the Ronald McDonald house and were able to go down to Ronald McDonald in the hospital for meals.  During Brodie’s surgery, a nurse would come every hour to update us on the procedural progress, which was very reassuring as a parent.  I think one of the greatest things about Riley was that we got the chance to talk to other parents who were facing similar or even more severe situations.  
 
The experience was very emotional and overwhelming for our family, but it was very positive. The inspiration we got from other families and the entire Riley staff helped us tremendously during that time. Our experiences at Riley have helped shape our life to make sure that Brodie grows up as strong and healthy as possible. He, of course, does have to follow-up every year with his cardiologist to make sure everything is okay as he grows, but he is healthy now and we will never be able to express our gratitude for that.  

August 19th – Mickey Deputy

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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!

July 22nd- Kaylie, Landon, & Hudson Phillips

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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! 
 
-Holly Phillips

July 8th- Cecil Meyer

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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 wasdisplaced, 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! Hehas 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! 

-Ivy & Andy Meyer