March 13, 2016 – Jon Nugent

Jon’s Riley Story:

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

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

March 6, 2016 – Cassi Bacon

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

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

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

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

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

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

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

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

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

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

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

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

Bacon Family Information:

Gary, Rhonda, Kayla and Cassi

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

February 29, 2016 – Braedon Upchurch

At 14 weeks into my pregnancy, I found out that I have having monoamniotic twins. This means that I was having identical baby boys, however they were both in the same amniotic sac. This rare condition meant that there was an 85% chance that both boys would die prior to birth due to the possibility of umbilical cord entanglement. At 26½ into my pregnancy, an ultrasound showed that one of the twins heart had stopped beating and had died. I was immediately admitted into the OB ICU unit and placed on a monitor 24/7 to watch the other baby’s heart rate.

At 28 weeks, which is 3 months early, Braedon Upchurch was born via emergency C-section as his heart had begun to slow and then stop beating. He was 2 lbs. 3 oz and 14 inches long. Upon birth, it was diagnosed that Braedon was the recipient of a condition called Twin-to-Twin Transfusion Syndrome (TTTS), which can only happen with identical twins. This syndrome is created when the stronger twin begins to take all the nutrients and blood flow from the placenta and the weaker twin is then deprived of these things. Braedon was the weaker twin and required 3 blood transfusions within the first hours of his life due to extreme anemia. He was immediately transferred to Riley Hospital and placed in the NICU.

During the next 11 weeks, Braedon developed many complications due to his prematurity including a yeast infection in his blood and skin, fungal sepsis, a severe fungal infection in his intestines, dangerously low platelet counts and the detaching of the retinas of his eyes (Retinopathy of Prematurity or ROP). During his stay, he had several more blood transfusions, too many antibiotics and fungal medications to count and X-rays every hour for 4 days. He had surgeries to place central lines into his chest, as his veins were beginning to collapse due to the amount of IVs placed, double hernia surgery and laser eye surgery in both eyes to save his eyesight. We were told that he would probably stay in Riley for 3-6 months with all these complications, however, Braedon was strong and was sent home 11 weeks after he was born, which was 1 week prior to original due date.

The doctors and nurses at Riley never let you give up hope and they support the entire family through all the crisis of having a critically ill child. Not only do they treat the ill child, they take care of the entire family. We will always have a very special place in our heart for Riley Hospital and the doctors and nurses in the NICU. Thanks to the wonderful doctors and nurses at Riley, our miracle boy survived with no long-lasting effects. Braedon is now 10 years old and a perfectly healthy,

rambunctious boy. I couldn’t imagine taking my children any place other than Riley as they are, in my opinion, the best place to care for our children!

February 21, 2016 – Carter Swathwood

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 4-year-old and 3-month-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. In 3 short years, Carter has raised over $13,500 for Riley. Thank you for all your support!!!!

February 14, 2016 – Whitney Cain

Whitney Cain was taken to Riley for the first time when she was a newborn, and today, she is there again fighting for her life. Here is her story:

At 4 days old Whitney was taken to the ER with a severe case of hiccups that would not stop. When we got to the hospital she was dusky and in distress and the doctors found her body temperature to be 94.0. Quickly the doctors life-lined Whitney to Riley where she was placed on an EEG which showed seizure activity. From this single moment we knew that our lives would be changed forever. Whitney was diagnosed with epilepsy and a potential mitochondrial disorder. Over the first few months she would experience seizures of up to 5 hours, and no medicine was able to calm the brain activity. At 5 months of age Whitney was flown to the Cleveland Clinic where she underwent a 48 hour EEG. What was supposed to be a 48 hour stay turned into 3 weeks of continuous monitoring due to the severity of the seizures. Yet the doctors still could not supply us with an answer.

At 11 months old doctors thought it was a good idea to do a muscle biopsy for the mitochondrial disease and they insert a Vagal Nerve Stimulator to try and help alleviate the seizures. A VNS essentially acts as a pacemaker for her brain. The muscle biopsy was so long that it took 6 months to get back the results, which came back positive. At this point doctors told us that Whitney had a multi-complex mitochondrial disorder affecting her respiratory, neurological and gastrointestinal systems, and that there was no cure. They told us her life expectancy was short.

Roughly two weeks ago on January 24th Whitney had to be life-lined to Riley for the 38th time. However, this time around doctors found a new diagnosis, dysautonomia. Dystautonomia is a failure of the autonomic nervous system, which controls majority of your involuntary body processes such as body temperature and heart rate.

“It is hard to watch your child suffer knowing there is nothing we can do to help. She is nonverbal, wheelchair bound and has a feeding tube for all her nutrition and medication needs. She is the light of our lives and has a 9 year old sister Hannah waiting on her at home. We never leave the bedside as she continues to fight for her life.” -Mrs. Cain

Below you will find a gofundme link. This will not be usual for Riley Kid of the Week but currently Whitney is fighting for her life and when I was showed this story it moved me. But more importantly it moved one of our amazing committee members to go start a link for support. If you feel compelled every little bit will help this family and show the amazing love that PUDMers have. Take a moment to think about why you dance.

We have personally seen how many miracles a single dollar at a time can make, please consider donating and helping the Cain family as they are fighting at Riley right now!

Sincerely,

Robert J. Minturn
Riley Relations Executive 2016

https://www.gofundme.com/whitneycain

 

October 4th, 2015 – Ryan Lopez

Ryan was diagnosed with (ALL) Acute Lymphoblastic Leukemia when he was 5 on April 7, 2008. This is his story.

Ryan was a typical 5 year old. He was in kindergarten and had his first T-ball practice on Wed April 2nd, 2008. He just didn’t seem as excited as we had expected. He didn’t keep up with the other kids. It was cold and we thought he was maybe coming down with something. Sure enough that Friday he came home from school with a fever and seemed to us to have the stomach flu. Ryan spent the weekend throwing up and feeling normal flu like symptoms; fever, body aches and weakness. Monday the 7th I stayed home from work to take him to the clinic because he was looking a little dehydrated and complaining that the backs of his knees were hurting to the point he didn’t want to walk. We got to the clinic and they took one look at him and said to take him to the emergency room because he probably needed IV fluids. Nothing I haven’t been thru before so off we went to the ER.

As they were asking me questions I had remembered a few weeks back he had complained of a headache so they sent us off for a CAT scan just to check it out. While there I had been asked by two nurses if I wanted to call someone to be here with me, which I didn’t think anything of at the time but looking back they must have already known I was in for a huge spiral downward! By the time we had gotten back from the scan there were 2 doctors and a nurse holding a box of tissue waiting for us and I knew something was up. At that point I just wanted to run the other way.

They sat me down and again asked if there was anyone they could call and that there was an ambulance on the way to take us to Riley because the preliminary tests shows Ryan possibly had Leukemia! That was something no parent could have ever prepared themselves for, to hear those word “Your Child Has Cancer.” His status from that point continued to spiral downward. He tested positive for a strep infection so they started IV antibiotics, and his Hemoglobin was extremely low, so they also started a blood transfusion. While in the ambulance on the way to Riley, he got a nose bleed that wouldn’t stop because he had little to no platelets and a head to toe rash that after days in isolation they figured it out to be septic emboli, which meant the infection was so bad it was seeping out through his pores causing little blisters all over his body, he was one very sick little boy.

Treatment for this type of leukemia for a boy at the time he was diagnosed was a long 3 ½ years. It involves various types of chemo administered through an IV in his “Port”, placed into his spine by a spinal tap, injections in his legs, as well many different kinds of pills he had to take nightly, weekly and monthly sometimes up to 18 pills at once. He had multiple procedures like spinal taps every 3 months, bone marrow aspirations to check for remission, and surgery to have a port a cath put in place. The “port” is a small catheter inserted into his artery and it is how they would access a vein not only to administer his IV chemo but also to draw his blood to check on how he was responding to his chemo. There were different stages of the treatment process some stronger and harder than others, some requiring an inpatient stay, and some requiring him to be isolated at home so he wasn’t exposed to any germs.

Due to all his complications, Ryan spent over 2 months in the hospital where most kids would have had outpatient treatment after 4 to 5 days. There were things Ryan had gone through that even stumped the doctors. He lost layers of skin off the palms of his hands & feet and had rashes from head to toe. The

infections took months and many different kinds of antibiotics to beat. He had allergic reactions to some of the medication so it was hard to get his infection under control. Strep had settled in Ryan’s knee and would flare up over and over again finally after 3 surgeries and multiple needle drains of his knee he finally got rid of the infection but ended up not able to walk for over a year. The chemo had caused mouth sores and upset stomach so bad Ryan had lost over 15 pounds in just a few weeks and ended up on IV nutrition for 16 hours a day for 3 months. His liver couldn’t handle the amount of chemo and started to fail during this time as well so it was a delicate balance between giving him as much chemo as the soctors felt he needed, but not too much to damage other organs. We felt like we were back at stage one teaching him how to eat & walk all over again.

It is hard to believe he is now off treatment and healthy. We are still seeing the long term effect of what chemo does to a child’s little body, like emotional issues, learning disabilities, and lack of organizational skills. We are currently work with neuropsychologists that will follow Ryan for years to come helping us figure out what the life time effects chemo has had on him. Even with all he has been through Ryan kept a smile on his face (most of the time) and loves to talk about how great Riley has been to us. Ryan was nominated as a Riley Champion in 2012 and raises awareness for LLS pennies for patient program, he even grew his hair out for Locks for Love to make a wig for others who have lost their hair.

September 20th, 2015 – Riley Lesh

Check out this week’s Riley kid – Riley Lesh – and hear her story from her mom’s perspective.

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. On February 26, 2002, I went to the doctor because I was not feeling well. I was 25 weeks pregnant. I was diagnosed with severe preeclampsia and sent to St. Francis Hospital on the south side of Indy. 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 continue to go to Riley for her annual pediatric appointments. Riley is now eleven years old. She’s in the sixth grade and her prematurity is a ghost. We spent many years waiting for disabilities to surface. But instead, the prematurity just exists in our memories and at times, in our dreams. 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.

September 13th, 2015 – Jon Nugent

Jon’s Riley Story:

Jon Nugent was diagnosed with a rare brain cancer as a sixth grader in March of

2009 after experiencing seizures. His treatment through Riley Hospital for Children

included surgery, chemotherapy and 13 proton therapy sessions. Jon also suffered a stroke, and faced a long recovery where he relearned to walk. Since completing his treatment, Jon now plays varsity soccer, and JV volleyball, and also finds time to join fundraising efforts including Riley Dance Marathons.

The Nugent Family:

Jon, age 16, is a junior in high school and he plays varsity soccer, manages girls basketball and track teams, raises funds for Pediatric Brain Tumor Foundation (over $22,000 to date) and collects Pop Tabs for Riley. He volunteers at school to help with any sport keepings books or running clock. He also works with Rachael Bazell, former Purdue featured twirler in her quest for Miss Indiana with her platform of finding a cure for cancer.

Jordan, his sister, is 13 and in the 8th grade. She plays volleyball and is a cheerleader.

Joe, his brother, is 18 and is a senior. He plays varsity volleyball, soccer, basketball, and track. He will be heading off to college to study pharmacy.

Jo, his mom, is a registered nurse and she retired when Jon was diagnosed. She volunteers at Washing Twp School running concession stands for athletic events.

Joe, his dad, is a Certified Public Accountant and a Varsity Soccer Coach.

As you can see, we are a very sports oriented family. We spend most of our time at sporting events or practice. The kids are involved in something every season.

August 9th, 2015 – Anna Plake

Here’s Anna’s Riley story:

When asked to write a biography for a 12 year old, it is amazing to think a 12 year old has had enough happen to her to need a biography. However, when living with a chronic illness most of your life, a lot does happen. When Anna was 20 months old, she started walking a little differently than normal. At first, I, her mom, thought I was imaging it all and just being an anxious parent. Over the next several weeks, however, I realized something was dramatically wrong and unfortunately, it wasn’t my imagination.

At first, Anna’s only symptom was walking a little “wobbly,” but over the next few weeks she began to limp, especially after waking in the morning or from a nap. She never really complained, but Anna rarely complained about anything. She was a cooperative baby, always smiling and curious about the world. When she started to not be able to bear weight and refused to walk in the morning, it was then obvious something was wrong. At this point, she was crying and wanting to be held all the time…not at all like our Anna. Then, after about hour, she would start walking with a limp, and be back to herself. At this point, we went to her pediatrician.

At her first visit, Anna, of course, was her resilient self, not really showing any symptoms at all. Her knee was a little swollen upon examination, but she was crawling and running. When I discussed her symptoms with the pediatrician, juvenile arthritis was mentioned as a possible explanation. As a parent, this was devastating, as I immediately imagined the worst. Since her symptoms had only begun, we had to wait for the results of her labs as well as watch her symptoms. When we received the test results, everything looked normal, which was encouraging, but it was obvious that her symptoms were not resolving. Instead, Anna got worse. Since her lab results were normal, her pediatrician thought Anna’s symptoms were as a result of an injury and would resolve. As a parent, I knew that I had to be Anna’s voice and advocate. I made another appointment and several days later, her laboratory results confirmed that she had an autoimmune disease—juvenile arthritis.

Living in Iowa at the time, Anna was referred to Dr. Polly Ferguson at the University of Iowa, a two hour drive from our home. At her first appointment, we realized that Anna’s disease was worse than we knew. She had disease involvement in both of her knees and ankles instead of just one knee. She already was experiencing limited range of motion in both of her knees. As a result, she had to wear splints on both legs at night. In addition, she began to take daily medications, which she didn’t like because of the taste. However, Anna didn’t let this deter her. If you could see her at that time, you would never suspect anything was wrong. She didn’t let anything stop her…she acted as any toddler would. She climbed, ran, and jumped. She even figured out how to walk while wearing her splints.

Initially, Anna tried several medications to control the arthritis. Unfortunately, long term use of these medications required regular blood draws to get her laboratory values. This, I believe, was the most difficult part for Anna. She could deal with the daily pain from the arthritis because she was use to it. Blood draws were frightening to her. After the second time she had her blood drawn, she knew what was going to happen. She would try to hide under a chair in the waiting room thinking that I would not be able to find her and she could avoid having her blood drawn. Over the years, her anxiety of going to the lab has decreased, in part, because of the anesthetic cream we use, and also her knowledge of her disease has increased. In the beginning, it was difficult for a two year old to understand. Now, ask Anna, and she can tell you anything you want to know about arthritis.

When we moved to Indiana, we were worried about Anna’s care. With the change of jobs came the change in insurance. Would they cover Anna? We had to make arrangements in our coverage to make sure there were no gaps in health insurance so that she was covered. In addition, we had to change doctors. Luckily, we had Riley Hospital in Indiana. We found Dr. Bowyer through our physician at the University of Iowa. Once we met Dr. Bowyer, I knew we were good hands. Anna loves Dr. Bowyer and her staff, and considers going to the doctor a treat. Although Anna eventually developed arthritis in her wrists and finger, she is now doing quite well. In the last couple years, she started swimming on a club team, which has made a huge difference in her physical functioning and confidence. Anna is now 10 years old. Thanks to her doctors, nurses, physical therapists, and medications, most people would never guess that she has arthritis.

Over the years, Anna has faced many challenges. She has had side effects from her medications, including nose bleeds and elevated labs. She has to explain to peers and adults that yes, kids do get arthritis too and she is not making it up. She has had difficulties in dressing herself (buttons are particularly hard), opening doors, and pushing the button on the water fountain. It sometimes takes her a little longer to physically accomplish things. However, she also has had many blessings, including her physicians and their staff, teachers at Battle Ground Elementary, and many friends. The biggest blessing is Anna herself. Anna loves life and approaches each day with joy. She has not let arthritis stop her from doing what she wants. Instead, it has become a part of her because she does not remember a time when she did not have this disease.

Recent update… Anna isn’t swimming too much anymore, but she’s gotten into theater and doing character speeches. Anna favorite candies are Kit Kats and Sour Patch Kids. She is still doing quite well with her disease and seems to be a confident,

July 26th, 2015 – Oliver Gilkinson

Oliver is the Gilkison’s miracle baby.  He was born February 3, 2009. He has surpassed all odds and expectations set before him. Though there were no signs of problems during the pregnancy, Oliver was not breathing upon birth. He was revived, but still suffered from breathing difficulty during his first few weeks of life. While napping, Oliver would stop breathing and turn blue. As the episodes began happening more frequently, Oliver’s pediatrician recommended that he see a pulmonologist at Riley Hospital for Children.

Upon arriving at the pulmonologists door with our stories of “blue” spells and having a few spells in the office the Dr. sent us off for a sleep study. The sleep study was supposed to last a full 3 hours. After 2 hours they stopped the study and admitted us directly into the PICU. Over the next few days we endured a whirlwind of doctors and theories, but the common thread was that Oliver had obstructive apnea. They did a bronchoscope and determined that he had laryngomalacia, and a few days later he had supraglottoplasty. Oliver showed improvement in many ways.  However, a week after the supraglottoplasty surgery he had a follow up sleep study, and to our surprise he still had numerous apneas.  That was the first time the tracheotomy or trach was mentioned. They did see that he was improving in person even though he was declining on paper, and decided that we could go home for the weekend with the promise to return the following Monday for another sleep study.

We were confident Oliver was making a turn around. We were wrong!  His sleep study got worse.  Oliver had more obstructions, longer apneas, and higher CO2 levels.  Another concern was that he was not hyperventilating despite his elevated CO2 levels. Oliver was immediately admitted, on March 16, 2009, since it appeared that Oliver was asphyxiating himself. The doctors ran several tests to look for causes of the apneas and obstructions other than floppy airway.  The geneticists and metabolic doctors told us they didn’t see anything too out of the ordinary, but that they would be watching. Neurology thought that it wasn’t brain related and the pulmonary team thought that it might be a genetic condition called Ondine’s curse. The true problem was that Oliver had serious issues and no proponent to point at.  During Oliver’s stay we watched his condition worsen. The rule of thumb is that when a nurse walks fast, you worry; when they run, you panic. He was making the nurses run as he frequently set off his alarms.

After doing one last consultation with all the different departments and exhausting all of our options, we agreed to the tracheostomy. Oliver had his tracheotomy at 1:30pm on April 8th.  A few hours after his surgery, he was breathing on his own and feeding normally.  Finally, we thought problem solved. This was only the beginning of the next chapter in our story. The next evening after the trach was placed; Andy was at Oliver’s bedside and noticed he wasn’t acting normal.  A few minutes later Oliver had a seizure and stopped breathing for 20 minutes. Fortunately, the nurses were able to stabilize him by putting him on the ventilator (April 9, 2009).

This was a major step backwards for us. Oliver let the vent do all the work for about 24 hours until the results of a blood test indicated he was extremely anemic.  Oliver received a blood transfusion that gave his breathing a jump-start. However, his breaths were still very shallow and inefficient. The purpose of the ventilator was to give him bigger more efficient breaths, rather than breathing for him as before. A week after the trach Oliver had a follow up sleep study.  On the positive side of things, he only had a few brief apneas, which allowed the doctors to rule out central apneas. The study also indicated Oliver still had very high carbon dioxide levels, and was breathing very rapidly and in a shallow manner.  As a result of this and the previous events, the doctors told us Oliver would stay on the ventilator for an indeterminate amount of time. Oliver has since been given albuterol, which has brought his carbon dioxide levels down and given him steady strong breaths.

Oliver was sent home on the ventilator after every test came back negative for why Oliver was experiencing breathing troubles. Because they did not have a diagnosis, they could not give us a prognosis.  Oliver came off of the vent Christmas of 2009!  He had his trach until March of 2010. His stoma had not closed on its own so in the summer of 2011 it was surgically closed.  While in surgery to close the stoma they took a muscle biopsy of his thigh.  This biopsy confirmed that he had mitochondrial myopathy complex one deficiency (Mito: A neuromuscular disease that is progressive in its degeneration.) This then explained all of his breathing problems, and now his autism but even with this diagnosis we do not know all of what is to come for Oliver’s future.  So we move forward blindly only with the knowledge that this is Oli’s journey and lucky are those that can share it with him.

July 12th, 2015 – Molly Hess

Check out this week’s Riley story from the Hess family!

Molly’s story begins with my 5 week bed rest stay in the hospital. I began having trouble at 16 weeks gestation. I was put in the hospital at 18 weeks and stayed there until Molly was born. She was born at 2:52 a.m. on a Sunday morning. Molly was born at 23 weeks 5 days gestation. Molly was 1 pound 7.8 ounces and 12 inches long at birth. Those equate to a can & ½ of soup and as long as a Barbie. No one is ever prepared for the “rollercoaster” that comes with a preemie. We certainly were not.

At two weeks old, Molly was very very sick. Molly had pneumonia, sepsis, and possible spinal meningitis. She was too sick to do a spinal tap to tell if she had the latter of the three. We had not been able to hold Molly yet, so my child was sick and I could do nothing about it! I couldn’t hold, snuggle or just try to make her feel better. That is what a mom is supposed to do… She was on 100% oxygen and her oxygen saturations were at 20%. She was gray in color. She was lifeless. As parents, we can never tell you what it was like to hear the doctor tell us that Molly was very sick and the next 24 hours were the most critical. We prayed and prayed that Molly would still be with us in the morning. She was and we are sooo blessed.

She stayed in the NICU for 5 months. We moved from bed spot to bed spot and to different modules. Molly also had multiple surgeries. Molly had one surgery at 6 weeks old to close the PDA between her heart & her lungs. Another surgery was at 4 months to fix the retinas of her eyes due to her prematurity. Molly was fortunate to not need glasses until recently! Of course they are pink and she loves them! =)

At the end of 5 months, it was discovered that Molly didn’t have an airway to support her body. Her airway was the size of a coffee stirrer! The doctors suggested that we have a tracheostomy put in so Molly could breathe. We realized that she may also not be able to eat in the traditional manner….by mouth. They suggested we put in a gastrointestinal tube so she could get her nutrition other than by mouth. Molly stayed at Riley another 3 months so that we could learn how to care for her properly. She came home after 8 months in the hospital, on a home ventilator and with lots of equipment to help her sustain life.

Molly is one of the most amazing people I know. She has been through more than any of us should ever go through. At age 3 we worked with Cincinnati Children’s Hospital to start the process of reconstructing Molly’s airway. A very complicated procedure invented by a doctor at that facility. Over a two year period, a team of doctors reconstructed her airway and were able to remove the trach. Three summers ago her doctors in Cincinnati reconstructed her airway one last time to close the hole where her trach had been….(the stoma). By closing her stoma, they gave her the opportunity to be like every other kid her age….she was able to swim and play in a sand box for the first time last summer.

Molly is a very busy girl and active like any other nine year old. She loves pink, singing songs, adventuring and bugs!!! She is in a regular second grade class and we are sooo proud of her. She has overcome all the odds that were put against her. We occasionally have things that

come up that we need to address, but for the most part Molly is like all the other kids. We hope that you see the world from her eyes as you go through the journey of life. Carefree and willing to learn about others along the way!

June 21st, 2015 – Hannah Jacobs

Check out this week’s Riley story from the Riley kid herself – Hannah Jacobs!

Hi…I’m Hannah Jacobs. First of all I would like to thank all you for everything you are doing for Riley! You are making a difference! My story started July 17, 1995…the day before I was born. This is when my family found out that there was something terribly wrong. This is when they found out that my spine didn’t form correctly…I had Spina Bifida. My mom had an emergency C-section the next day at Memorial Hospital in South Bend. I stayed there for the next month.

Then I became a “Riley Kid”! For the first year I had appointments at least once a month, and I would see several doctors at each appointment. I have had surgeries from head to toe. Too many to count! The one great thing at Riley, no matter what kind of specialist you need, they have the best! That makes it easier for your Mom and Dad, knowing that their child is in the best hands! These doctors and nurses have become part of our family. My dad says that Dr. Cain knows me inside and out! I’m not sure what my life would be like without doctors like him.

Riley has done so much for me, that I decided I needed to give back…that is where BSUDM came into my life. My sister Amy told me that I needed to come to this dance marathon. We had so much fun and met so many wonderful new friends! Amy became more involved in this amazing fundraiser and asked me to start one at my high school! With the help of some outstanding students at PHS we held our first dance marathon last year, raising over $11,000 for the kids at Riley! Last month we had our second DM at PHS…raising over $20,000! Yes the PHSDM ROCKS!!!

I have had the honor of being named one of eight Riley Champions for 2013! I will always be a Riley Kid and proud of it! FTK!