November 3rd, 2019- Emily Newcomb

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.

October 20th, 2019- Cohen Elliott

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.

October 13th, 2019- Joseph Peters

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.

October 6th, 2019- Hannah Gold

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.

September 30th, 2019 – Olivia Lautzenhiser

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’s got some processing delays but she’s doing amazingly well.  We met with Dr. Stanley just this past May and got a clean bill of health.  Olivia has had scans of her heart, her kidneys and her brain.  She’s perfect.  She’s doing what we all do just with less DNA.  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 22nd, 2019- Bryson Faus

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 came 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 born 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 6 years 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. 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 patient and need to be followed by cardiology throughout his life.  

Although Bryson has been through more in his 6 years 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 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 and 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 find someone who can provide the best possible answer.

September 15th, 2019- Sloane Davisson

Sloane and her family are a new Riley Family for PUDM this year. Sloane recently turned 3 years old and enjoys dance, gymnastics, and music. Read about her Riley story as told by her mom below:

“Sloane was diagnosed in November of 2017 with stage 4 bilateral retinoblastoma, advanced cancer in both of her eyes. She was only 15 months old. This particular cancer is very rare, and Riley is the only hospital in Indiana that has a retinoblastoma specialist. Immediately upon diagnosis Sloane underwent further testing which showed us this cancer was caused from a genetic mutation and something that she will live her life with. From November 2017-May 2018, Sloane went through chemotherapy at Riley every 4 weeks. Thursday’s and Friday’s were our chemo days. The summer involved a few trips to NYC for further treatment recommended by her doctor for Sloane’s right eye. Sloane underwent multiple treatments directly to her eyes to treat the cancer on top of chemotherapy. While her tumors behaved well while she was going through chemo, in June of 2018 the cancer started worsening in her left eye. In July of 2018 Sloane had her left eye removed at Riley to keep the cancer from spreading to her brain. While that surgery proved to be no walk in the park, she finally got her new prosthetic eye just before thanksgiving in 2018.  Sloane is in remission now, she is happy and thriving and keeps everyone around her laughing. Sloane goes back to Riley every 3 months for check ups with her oncologist. She also has eye exams under anesthesia every 6-8 weeks with Dr. Plager, her ophthalmologist. These eye exams will be frequent for the next few years as she’s still at a high risk of her cancer coming back until age 5 or 6. Sloane loves her big sister Audrey, loves gymnastics and dancing, and is one of the funniest kids I’ve met. Her spirit is high and we always say cancer never stood a chance against her.”

September 1st, 2019- Mickey Deputy

“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!”

August 25th, 2019- Faith Amor

Faith was born with no medical problems at all! We started noticing that she was not keeping up with other children her age developmentally by about 6 months of age, which is when our Riley trips began. 

First, she had an MRI, which showed there were problems, but gave us no answer about what the cause could have been. For the next year and a half we would make many trips to Riley to see a developmental pediatrician and neurologist in an effort to help Faith and to determine the cause of her problems. Then, when Faith was 2, we had a surgery at Riley to put in a feeding tube and do more testing. When the test results came back, it was determined that Faith had a mitochondrial disease, also known as “Mito.” It’s a neuromuscular disease where the mitochondria in the cells fail to produce the energy the cell needs to function properly. It affects every child slightly differently depending on severity.  

With Faith, it has affected her ability to walk and talk and function like a normal child should. She can crawl now and pull herself up to stand, but does not walk and has a wheelchair to get around in at school. She does not communicate with words, but definitely communicates to us her needs in other ways. Her favorite thing to do is to play with her brother! Faith has a long Riley road ahead that will include many more doctor visits and therapies. She is very strong at heart and takes everything in stride.  

We appreciate all that Riley has done for us as a family and the support we get at every visit from the doctors to the nursing staff to the lab workers who draw blood for testing. Everyone is so great at Riley!

April 28th, 2019- Hannah Fulford

Hi! My name is Hannah Fulford, and I am from Zionsville, Indiana! I am a congenital heart defect survivor.  I was born in 2004, with four holes in my heart. I had two atrial septal defects and two ventricular septal defects. My breathing was very labored and my heart was enlarged. Because of the holes in my heart, my heart had to work very hard. I was very thin, and I required a feeding tube because I had to eat every four hours-twenty four hours a day. My heart was in congestive heart failure, and I was diagnosed as failure to thrive and I had Hypotonia (low muscle tone). When I was three months old, I was admitted into Riley Hospital and had open heart surgery.  

I go back to Riley yearly for checkups, and I will require more surgery in the future, but I am not worried because the doctors there are great, and thanks to you, and the money your raise advances are made every day! Now I play lacrosse and sing with the Indianapolis Children’s Choir! 

April 21st, 2019- Carter Swathwood

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!!!!” 

April 14th, 2019- Cecil Meyer

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!”