Evan Holland

Meet our Riley Kid of the Week for this week – Mackenzie O’Brien! Mackenzie tells us a little bit about herself, as well as her Riley story, below.

I’m Mackenzie. I would like to tell you a little bit about myself. I love softball, school, dance, and volunteering as well. I’m from Brookston, Indiana, which is about two hours from Indianapolis. This year will be my sixth dance marathon. When I grow up, I either want to be a pathologist or a detective for the CIA. My favorite books are the Gallagher Girls, Divergent, and The Hunger Games. My favorites movies are Frozen, because of Olaf. I also like Divergent because of Tris, and School of Rock because of Jack Black. I’m planning on graduating early and going to Yale University to get my degree.

When I was 1 year old, my dad discovered a weird bump on my kidney. When my parents took me to the doctor’s office, they discovered that I had Willem’s tumor in my kidney. They got it out, but 2 years later they discovered a different tumor in my other kidney. They got that one out too and now all I have is 1/3 of a kidney left, but I am completely cured.

Mackenzie was unable to attend PUDM last year but will be joining us this year and we are so excited to see her and her family!

We would like to introduce our newest Riley kid, Emily Hume, as our Riley Kid of the Week! Emily has had an incredible experience at Riley so far and she tells hers own story below.

My story began on July 3rd, 2013. I went to my pediatrician for unresolved flu like symptoms. My doctor ran some tests and said I tested positive for Campylobacter and gave me an IV of Azithromyacin and said I would be good as new! After receiving the medicine from an IV, Dad said I suddenly crashed and was having convulsions while my eyes were rolling into the back of my head. After the doctors worked for about 45 minutes to stabilize me, I was Life-Lined to Riley.

When I got to Riley, I was diagnosed with Cardiomyopathy of the left ventricle and my parents were told that I would need a Berlin heart to keep my heart functioning.

I had surgery to receive the Berlin Heart on July 5th. There were a few complications that caused further surgeries to be necessary. After about 3-4 weeks, I was released to the Heart Floor, I had a daily routine of school tutoring, walking the floor, echo tests, blood testing, and daily monitoring in hopes that my heart would recover and that the Berlin Heart could be ex-planted.

After several months, my Dad asked the Dr. to make a plan for the ex-plant of the Berlin Heart or a transplant. Finally, we got to the day where I went for surgery and they turned the heart off and tested my own heart function with a catheter. Surprisingly, my heart had not recovered enough to allow ex-planting and it was determined that I would require a heart transplant in order to leave Riley.

Late February or early March on a Sunday, we received word that a transplant candidate had been located. I was prepped for surgery and went down for surgery. Early Monday morning, my parents were informed that the candidate heart was not good enough.

On March 21st, we received word again of a transplant candidate. No one got too excited due to the disappointment of the previous transplant attempt. However, this time I did receive a new heart. How miraculous and self-less was the person willing to donate a life-giving organ, which gave me life.

After a couple of weeks I was released to Ronald McDonald house for another 3-4 weeks. We would make daily visits over to Riley for blood testing and heart testing. Finally, we were together again as a family after a 10-month stay at Riley. It felt so good to stay at Ron Don where I had more freedom.

I am now able to attend school with my peers and do things that I had not enjoyed for many months. Riley and Ron Don were wonderful. Thanks, so much Riley. Riley is now a permanent family member.

We want to welcome the Hume family to PUDM and hope to meet all of you soon and see you at the marathon in a few short weeks!

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.

Our Riley Kid of the Week for this week is Cassi Bacon! The Bacon family is very involved with PUDM and Cassi’s sister, Kayla, is our Merchandise Executive this year for PUDM. Cassi’s story is told below by her mom.

Cassi was born on August 21, 2004, although her anticipated due date was a week later. During the afternoon on that day, I noticed that the baby was not moving around as much as she usually did. When we called our doctor, he suggested that we go to the hospital for a stress test. The test showed that Cassi’s heart rate was not responding to stimulus as quickly as the doctor would have liked. He decided she needed to be delivered as quickly as possible and performed a C-section that night.

It was apparent that something was wrong as soon as he lifted our baby girl from my womb. Cassi was quickly passed off to the awaiting pediatrician without me 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. 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 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.

At Riley, ultrasounds showed that several blood blots 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. 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 question was, “When? Let’s do it and get our baby home.”

We spent the next week and a half waiting and watching our little girl become healthy enough to tolerate the surgery. My husband and I stayed at the Ronald McDonalds 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. Nurses sat with us, hugged us, brought me a footstool 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.

Cassi 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.

Today, Cassi is a fantastic little girl who 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 class. Having one arm has really not slowed her down much. She rides her bike with ease and even attempted to zip line at her church camp last summer. 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 so 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.

Our Riley Kid of the Week for this week is Bella McBride! The McBride’s are relatively new to our PUDM family and we are looking forward to seeing them at the marathon in just a few short weeks. Bella’s Riley story is told below by her mom.

We found out about Bella’s diagnosis of Spina Bifida when I was 18 weeks pregnant. She was born at 38 weeks at IU Med and was taken straight to Riley for surgery. She had surgery on her back to close her spine at 5 hours old. We stayed at Riley for 8 days. For the first year, we made weekly trips to Riley to get casts put on her legs to correct her club feet and to bring her legs down. She has had 5 additional surgeries in her 4 ½ years of life.

Bella is a spunky sweet little girl. She has the biggest heart. She is paralyzed below the knees and has dislocated hips. She can walk some with a walker or forearm crutches, but usually crawls or uses a wheelchair to get around. She is in preschool and plans on attending kindergarten in the fall.

Bella loves stuffed animals, ninja turtle, her kindle, and American girl dolls. She loves the color blue and her favorite foods include chicken nuggets, macaroni and cheese, cheese pizza, brownies, and apples. She loves to play games like go fish, memory, Uno, hide and seek, and sorry. She absolutely loves all Disney movies.

We want to welcome the McBride family once again and hope they are looking forward to their first PUDM experience!

Welcoming Joseph and the rest of the Peters family to PUDM!

Our Riley story began the afternoon of July 24, 2014, not so long ago but feels like years. Our son, Joseph, was in an accident with a lawn mower. His foot was severely cut up to above the ankle. The Monticello ambulance took us to Lafayette and in the emergency room they told us, “We are flying him to Riley.” Those words floored me. We always hear about kids going to Riley but I never believed we would need to go. From the minute we arrived at Riley, even through the airlift flight, we were treated with the utmost respect. In the emergency room at Riley I was so scared facing all of these doctors dressed in yellow gowns. Joseph was calm and they were so good to us, even providing a woman who stood by my side explaining everything they were doing. He went into surgery shortly after and the amazing Dr. Myung came out to talk to us during the surgery to tell us she needed to amputate below the knee and because of the serious contamination, there was an increased risk of infection. Joe had a second surgery the following Monday, and his leg was cast. He got up and around using a walker a few times, and we were scheduled to go home on Wednesday. By Tuesday night, he developed a fever that resulted in an increase in his heart rate and had a very astute nurse not notified the ortho doctor on call, he would have been seriously sick (sepsis). The infectious disease doctors took blood cultures to try and identify what was causing Joseph to be so ill, what organism was he fighting. They finally were able to narrow it down to target the right antibiotics. Because of the infection, the leg required more wash outs and surgery, with a day in ICU, resulting in a final surgery.

Dr. Myung came to see us every day. Joseph and the nurses would have water filled syringe fights. The various therapies that visited were very special people. Joseph was very weak by this point, and had lost several pounds. They wanted us to stay in inpatient rehab, so we left our beloved 8 East to move to the rehab unit. The nurses there were just as wonderful, and with the help of physical therapy Joseph was winning wheelchair races in no time. Then another fever hit, this time with a rash all over his body. The infectious disease team worked hard to figure out what caused these symptoms, and it ended up he had a delayed allergic reaction to one of the antibiotics. They found another antibiotic that would fight the bacteria he had, and the reaction went away. After 5 and a half weeks in the hospital, we finally went home on August 30. Although we had 4 times when we thought we were going home and stayed, each time was a gift from God because the staff and doctors at Riley identified a concern that we couldn’t handle on our own. Everyone at Riley is a blessing. I’ve said Riley is the Disneyland of hospitals; it is all about the kids. Every doctor, nurse, volunteer, and staff have the interests of the kids in their hearts.

All of the nurses were so wonderful; I cannot even express how much they meant to us. And the child development specialist, psych services, pet therapy, music therapy, volunteers, storytellers, they were all amazing and made Joseph feel special.

Riley Kid of the week goes out to this handsome guy. Lucas and his family came to their first PUDM last year and we hope to see them again this year!

In April 2013, when Lucas was 2 years old, he developed a bump on the side of his head near his right ear and temple. After an ultrasound showing swollen lymph nodes and a round of antibiotics, a CT scan was done at Lafayette’s IU Hospital. On Monday, April 29, 2013 the scan showed a mass growing on his skull. Our pediatrician immediately set us up for further testing to be done the nest day at Riley. De. Lee (Lucas’ pediatric hematologist oncologist) and several great nurses called to prepare us and give us an idea of what to expect.

When we arrived at Riley everyone was so helpful and informative. We met with Dr. Lee, who is amazing, and a biopsy was performed that afternoon. On Friday, May 3rd, we received the diagnosis of Langerhans Cell HIstiocytosis (LCH), a very rare disease where certain white blood cells grow out of control and multiply quickly. Thankfully, the prognosis was good. Lucas started his treatment plan with chemotherapy once a week for six weeks, and then once every three weeks for a total of 12 months.

On Monday, May 6th, Lucas’ port-a-cath was implanted and he received his first Vinblastine treatment. Within a couple of weeks, the mass had gone down. Another CT scan showed that the mass was gone and the bone was healing by the 6th week.

Today, Lucas is over halfway through his treatments. He never ceases to amaze us by his strength and joyfulness. We are so thankful for Dr. Lee, the entire pediatric Hematology Oncology team and all of the many great doctors and nurses at Riley!

We would like to welcome our newest family to PUDM, the Meyer’s! We are absolutely thrilled to have them and their son, Cecil, who is shown above. Riley had a huge impact on Cecil’s life and his story is told below.

Cecil has had a rattle in his chest since he was three months old. Despite months of doctor’s visits and many medications, it never got any better. In fact, it got so bad that on Tuesday, March 4^th, 2014, he was rushed to the hospital because it had grown so hard for him to breathe that they were afraid he would eventually become too exhausted to continue. He was air lifted to Riley, where they discovered he has cancer. His tumor was so large that it took up the entire right side of his chest cavity, crushing his trachea and blood vessels in the process. He was attempting to breathe through a 1mm opening. The doctors were unsure if Cecil would make it through the night.

After days of waiting for a test and then the results, it was discovered that Cecil has Neuroblastoma, a large cancerous tumor that is found in infants with most cases occurring in children younger than two years of age.

Cecil underwent 4 rounds of chemotherapy in March, April, and May of 2014. There was much sickness and many trips to Riley for this or that; but most importantly, he was breathing on his own, without any problem! He responded very well to the chemotherapy and the tumor shrunk 82% with this treatment. Once it was reduced to that size, the surgeons felt it was finally small enough to surgically remove the remainder of the cancer. On May 27, 2014, he underwent a median sternotomy procedure to remove the tumor. The surgery went beautifully; the veins peeled away nicely, his heart was not in the way, and they did not have to sacrifice any muscles.

We have been home from Riley since early June, with CT scans and check-ups every few months. We were recently just at Riley and had a cancer free celebration! Cecil is almost 14 months old, and with all the time spent in the hospital and the lost belly time due to the tumor, his method of getting around is through butt-scooting. He has a physical therapist that works with him on learning the skills to crawl and walk.

We want to extend a warm welcome to the Meyer family and are so excited to meet them in person and learn more about their wonderful family!

Our Riley Kid of the Week for this week is Faith! Faith has as incredible Riley story and it is told below.

Faith was born with no medical problems at all! We started noticing that she was not keeping up with other children her age developmentaly 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 answers 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 to 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! She is a very happy child who loves music. 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!

Stories like this one inspire us to keep raising money FTK every single day! We hope to see the Amor family very soon!

Our Riley Kid of the Week for this week is Mickey Deputy! Mickey is very involved with PUDM and we absolutely love having her around. She is full of energy and has a contagious smile. Mickey tells her own story about her experience at Riley below.

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 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 the 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 in 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 to help my friends and me!

Mickey has overcome so many obstacles in her life and she is an inspiration to all of us! We can’t wait to see her at PUDM this year!

Our Riley Kid of the Week for this week is Caleb Hoppe! Caleb has an incredible Riley story and it is told below.

On May 21, 2012, Caleb went to his Laporte pediatrician for blood work for unexplained bruising. Later that night we got a call from Caleb’s pediatrician saying to go to South Bend Memorial oncology/hematology for another blood draw.

That night in a conference room, they told us the horrific news…Caleb has leukemia. Since it was so late at night by the time all was said and done, in the morning we were rushed, by ambulance, to Riley. That morning at Riley, Caleb underwent a bone marrow biopsy and spinal tap to see what type of leukemia he had and to see if it spread to his spinal column and brain. Luckily they found no leukemia cells in his spinal fluid! He was diagnosed with Acute Lymphoblastic Leukemia. He was put on average risk treatment due to the fact that he was under 2 and the amount of leukemic cells found in blood samples.

We stayed at Riley for 6 days. In those 6 days, Caleb had surgery for port placement, started chemo, had another spinal tap, another bone marrow biopsy, and had blood and platelet transfusions. Saying it was a rough week was an understatement.

Leukemia treatment is unusual because it’s in blood and blood travels everywhere. There are no stages. There are 6 phases of treatment: inductions, consolidation, interim maintenance 1, delayed intensification, interim maintenance 2, and then maintenance. Complete treatment for a boy is 3 years, 3 months and for girls it is 2 years. These phases are all different and involve harsh IV chemo, oral chemo, spinal taps, bone marrow biopsy, steroids, and injections.

Caleb went back to Riley at the end of month 1 for another bone marrow biopsy. Caleb still gets his daily oral chemo from Riley. If anything should happen to the port, Riley will also be the one to fix or replace it. When treatment is completed on July 31, 2015, Caleb will go back to Riley to get the port removed.

Caleb was in remission early on, on June 1, 2012. Although in remission leukemia has the tendency to come back, so the treatment is a long process to keep it away for good. Caleb is in the final phase of treatment, the maintenance phase. He now receives IV chemo every 4 weeks, spinal tap every 12 weeks, oral chemo daily, steroids twice a day for a week every month, and antibiotic on weekends.

Caleb and his twin brother, Carsen, are absolutely adorable and we are so glad they are a part of our PUDM family!

[box] Caleb was featured in an RKOTW post back in September of 2013.

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