Danielle Olson

September 3rd 2017 – Keegan Tutrow

by

Keegan was a second grader and was looking forward to a partial school day and plans with a friend to go to the zoo when I got a call from his school nurse.  She told me he was having a horrible headache, and by the time I got him home, it was apparent he was really sick.  After a visit with his doctor, and then a neurologist, an MRI was done.  It was the first time we heard the words ‘Chiari malformation’.    

A Chiari malformation happens when part of the cerebellum herniates outside of the skull.   We tried for a year to treat his symptoms as a migraine, but he just continued to feel worse.  We finally asked for a second opinion at Riley where we met Dr. Jodi Smith.  By that time, Keegan was coming home from school and falling asleep as soon as he put his backpack down until time to wake for school the next morning.  He was choking on his food, and his hands and feet were going numb in addition to the rotten head pain/nausea.  Dr. Smith found he had damage to his spinal cord, called a syrinx, from the Chiari malformation.  He needed brain surgery, but little did we know this was the beginning of a long journey.  

Keegan’s sister Kaylee had been having symptoms as well. After a scan, we learned she too had a Chiari malformation.  The kids had brain surgery at Riley six months apart.  Since then, they have had several other diagnosis including dysautonomia, ehlers-danlos syndrome, and intracranial hypertension.  They both have had a few surgeries, and now have shunts.    

There have been months and months of time that the kids don’t feel well enough to do much of anything, including hanging out with friends or going to school.   It doesn’t get any easier to hand them to the staff as they head back down the hall for surgery, but we are always comforted to know we are handing them to Dr. Smith who will take excellent care of them!  Dr. Smith has taken the time to get to know us, can talk baseball with Keegan and academics with Kaylee, and has answered emails and calls in the evenings and weekends without hesitation.   When we recently needed a shunt x-ray for Kaylee, but Keegan was with us too, the radiology department staff greeted and teased Keegan by name.  

From the fantastic nurses on 9W, to the child life specialists that distract the kids from painful recoveries or procedures, and the kind staff that clean come in to clean our room, we have felt cared for as a family at Riley.  I wish no child needed Riley, but I am so thankful that Riley is there for those that do!

August 27th 2017 – Braden Upchurch

by

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 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!

August 20th 2017 – Riley Lesh

by

I found out I was pregnant just a couple of weeks after 9/11.  My doctor set my due date as June 6, 2002.  I was worried about terrorism affecting my pregnancy.  Prematurity never crossed my mind. 
 
 I was told that I would be on hospital bedrest for the next 15 weeks.  I had a seizure within an hour of getting to the hospital but they were able to get my blood pressure under control with medication. 
 
Two days later, my condition had worsened and I was diagnosed with HELLP Syndrome.  At this point there was obvious discussion of having to deliver our baby early and I was transferred downtown to Indiana University Hospital and their OBICU department.  We were hoping to make it to 32 weeks at this point, still two months shy of full term. 
 
The next day it became obvious that all of our goals were out of reach.  My condition became critical as I lost function of my central nervous system, kidneys, liver and sight in one eye.  The decision was made by our medical team to deliver immediately via emergency c-section to give me and our little girl the best chance at survival.  At this point, it was healthier for her outside my body than inside.  A doctor from Riley Hospital came to visit us and prepare us for our new reality.  We were told that if she survived birth, she would have about a fifty percent chance of going home.  He did, however, tell us that there was a 90% chance that she would experience a moderate to severe handicap.  I was only 25 weeks and five days into my pregnancy. 
 
At 1:29AM on March 2, 2002, Riley Marie Lesh entered the world.  It was not the beautiful family moment that we had envisioned.  Instead, I heard the door to the operating room open and close.  Rick quietly whispered that she was out. My surgery lasted another thirty minutes or so and by the time I made it to recovery, she was stable and ready for transfer to Riley.  They brought her to me in an isolette and lowered it so I could see her tiny body, completely covered in wires.  They told us that she weighed 26 ounces and was 13″ long. 
 
Rick went with her to Riley.  She suffered some complications on the transfer.  One of her lines caused her heart to beat irregularly and she lost blood flow to her leg.  When Rick walked into her module, two doctors were leaning over her, trying to rub it back to life.  They escorted him down to the NICU family room until they could get her stabilized again. 
 
He spent the next 24 hours switching between Riley and University Hospital, bringing me pictures and at one point, telling me that he had briefly gotten to hold her in his hands while they changed the blankets in her isolette.   Finally, I was able to make the trip to Riley to see her for myself.  Our first visit was much too short.  I touched her tiny back for a handful of minutes before my nurse told me it was time to go back.  And her body was too sensitive for us to do anything other than rest a finger on her.   
 
We had no choice but to take each day at a time, and some days, it felt like we took each second at a time.  At two weeks old, she had surgery to repair a duct in her heart that wasn’t closing on its own.  That surgery saved her life. Before the surgery, she was changing ventilators every hour or so in attempt to keep her lungs from collapsing or over-inflating.  She was given paralytic drugs to keep her still and let her body try to heal.   
 
The surgery was a success and she really showed her fighting spirit.  She was awake just hours after the surgery, as opposed to the predictions we were given.   A week after that surgery, we were allowed to hold her for the first time.   
 
The next few weeks were a roller coaster of good news and scary news.  She was getting bigger and gaining weight, but struggled with bad lungs and feeding issues.  It was finally decided that she would go home on oxygen and a feeding tube.  There were daily lessons on parenting, as well as laughter, tears and the sadness of watching other babies go home while we waited for our turn.  Even worse was watching and attempting to comfort parents whose babies didn’t get to go home.  
 
Finally after 90 days in the NICU, we were allowed to take her home.  It was May 31, a week or so before her due date.  A nurse had colored a Winnie the Pooh picture and hung it on her crib.  It said, “Hip Hip Hooray, Riley gets to go home today.” 
 
It was amazing to walk out of the hospital and let her experience the feel of a breeze on her cheek and the sounds of cars and nature for the first time.  It was snowing the day she was born and it was warm and sunny the day we took her home.   
 
We continued to visit Riley on a sometimes daily and weekly basis, until eventually we were only there monthly.  We also had therapist come to the house three days a week to help her learn how to do the things that typical babies do on their own.  When she was one year old, she was able to discontinue her therapies.  When she was 18 months old, she graduated from developmental pediatrics.   

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

August 13th 2017- Reagan DeLouch

by

Reagan was two months old when her pediatrician recommended we take her to Riley because she didn’t feel as though her head was shaped right. We drove up in December for Dr. Ackerman to take one look at her and say “Oh yeah, she has craniosynostosis.” She put Reagan through a scan for confirmation. At the end of the day we were sent home with the confirmed diagnosis of craniosynostosis. Craniosynostosis is when the platelets in you head fuse together prematurely causing your head to be mishapened. This, too, can cause vision impairments, learning disabilites, severe headaches and lack of room for the brain to grow porperly. February 4th, 2014, at barely 3 months old, Reagan had surgery. Dr. Ackerman had to separate the platelets in her head allowing her brain the proper space needed to grow.

To this day no one would know Reagan ever had a problem. The only things she has to show for it is a slowly enclosing soft spot at the crown of her head and a scar that goes ear to ear.
Reagan actually went under assessment and was accepted into preschool a semester early! She is starting back tomorrow at a new school.
Since before Reagan was even thought of Seth and I were in our local Kiwanis chapter who happen to be big supporters of Riley Children’s Hospital. Now that we have Reagan and we have all gone through such an experience with Riley, we continue to support Riley and have Reagan joining the ranks with us.
Reagan is very outgoing and, though only 3 years old, she understands she is helping other children when she does Riley events. Aside from being a Riley kid and supporter, Reagan plays soccer and is starting the Fall season in a couple of weeks. She loves Moana and loves being outside doing anything!

There is also a YouTube video of Raegan’s story: https://youtu.be/PtrHV4xpG_w

August 6th 2017 – Anna Plake

by

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, Anna has gotten into theater and doing character speeches. Anna’s favorite candies are Kit Kats and Sour Patch Kids. She is still doing quite well with her disease and seems to be a confident, thriving girl! 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.

July 30th 2017 – Joseph Peters

by

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

July 23rd 2017 – Cecil Meyer

by

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. He instead had a large tumor. 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 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. We now have another little boy, Hugo. Cecil just celebrated his fourth birthday last Friday!

July 16th 2017 – Caleb Hoppe

by

On May 21, 2012, at 17 months old Caleb went to his Laporte pediatrician for blood work for unexplained bruising. Later that night we got a call from Caleb’s pediatrician saying 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, see if it spread to spinal column and brain. Luckily they found NO leukemia cells in spinal fluid!!! And he was diagnosed with Acute Lymphoblastic Leukemia. He was put on average risk treatment plan (low, average, and high risks plans) because he was under 2, and 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 platelets transfusions. Saying it was a rough week was an understatement. Seth and I then had to make a big decision…Stay at Riley for treatments (treatments over 3 years for boys) or change to South Bend Memorial. Riley hospital was absolutely wonderful but we didn’t feel comfortable being 2 1/2 hours away from our doctor. So we met up with the oncologist in South Bend Memorial hospital and loved her. We feel a lot more comfortable being 45 minutes away rather than 2 1/2 hours away. Leukemia treatment is unusual because it’s in blood and blood travels everywhere. There are no stages. There are 6 phases of treatment: Induction, consolidation, intermin maintenance 1, delayed intensification, interim maintenance 2, and then maintenance. Complete treatment for a boy is 3 years, 3 months and for girls 2 years. Theses 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. My Dr. likes the same set of eyes looking at the samples. Caleb also still gets his daily oral chemo from Riley. And if anything should happen with the port Riley will also be the one to fix/replace.
Caleb was in remission early 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 week, oral chemo daily,
steroids twice a day for a week every month, and antibiotic on weekends. Caleb had a rough year. We were at the hospital at least 1 time a week. He missed EVERY holiday. Along with harsh chemicals pumped into Caleb’s body he also had numerous blood, platelets, and IVIG transfusions. Caleb is a fighter and now his hair came back, he has more energy, and looks great. What more could we ask for.

July 9th 2017 – Joe Nugent

by

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, plays varsity soccer, manages girls basketball and track teams, raises funds for Pediatric Brain Tumor Foundation (over $22,000) 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.

July 2, 2017 – Lexi Burpo

by

Lexi is a spunky, outgoing, athletic, kind-hearted little girl. She is extremely active and loves to play soccer and do gymnastics! Lexi doesn’t know a stranger, and while she may try to come off as bashful when she first meets someone new, they are sure to be her new best friend within 5 minutes!! Lex is an extreme animal lover and even says she wants to be a zoo keeper when she grows up! Any movie with an animal in it, especially the Buddies movies, are guaranteed to be labeled as her favorites, next to Cinderella that is!  

Lexi talks about her experience and surgery at Riley Hospital For Children frequently, even though she was only 2 years old at the time, and understands how much the staff there helped her, especially Dr. Agostino! Because of this, she has grown a love for paying it forward and even has a lemonade stand & bake sale in the works. 

In July of 2010, at 2 years old, Lexi woke up one day with a large mass under her chin. After nearly three months of testing without any answers, Lexi’s pediatrician & ear, nose, throat specialist referred her to Dr. Michael Agostino at Riley Children’s Hospital. After finally being diagnosed with an unknown bacterial infection, Dr. Agostino and his staff performed life-saving surgery to remove two of Lexi’s lymph nodes and skin, all of which were infected with the bacteria that was taking over Lexi’s tiny body. Thanks to the staff at Riley, Lexi is now healthy and thriving!!!

June 18, 2017- Meredith Brooks

by

My name is Merideth, I’m 17 and I have POTS. POTS is short for Postural Orthostatic Tachycardia Syndrome and it’s a malfunction of the autonomic nervous system in your brain, one of the leading POTS specialists in the country compares the symptoms to that of congestive heart failure. Your brain has to retrain itself to respond and react to almost all stimuli it interprets. I was diagnosed with POTS almost 4 years ago when I was involved in a cheerleading accident and fell 10 ft head first on a basketball gym floor. Over the past 4 years I have had to step back and learn how to adjust to a new means of living and put a lot of the things most teenagers my age are experiencing on hold. Because of this I’ve formed a tremendous amount of gratitude to everyone at Riley as they make up a majority of my “A team” that make it possible for me to walk today and not rely on a wheelchair, to speak in front of so many people about what it means to really value life, and to just in general be as much of a teenager as I can. They help me to keep my body stable while I tackle POTS, it’s not easy at all to fight something in your own body but they do their best to help and support me throughout my journey and it means the world. I can never put into words how much of a miracle Riley is for not only myself but so many others, to be able to stand among others and share the value of life is something I will always owe back to Riley. Dance Marathon is one of the most amazing things I will ever experience and I will forever get chills every time I attend one. I type this tonight in my own bed instead of a hospital bed and I cannot tell you enough how much that means to myself and my family because it hasn’t always been that way. What you all and so many others do is truly honorable.  

June 11, 2017 – Addison Misch

by

On Myrtle Beach vacation of summer 2013, I (mom) found Addison standing in the condo bedroom doing a very strange shaking spell.  Her elbows were bent up and her hands/ arms were both shaking like she was trying to shake off excess water.  She was also spinning in a slow, lethargic circle with her right foot as the pivot point.  She also would not respond to me when I “talked” (and yelled) because she wouldn’t answer.  

When the episode ended, Addison explained that she could hear me, but couldn’t talk back.  She explained that this had happened to her before and that she had actually been able to “stop” some of them by trying to relax and calm down. 
When we returned home from vacation, we scheduled an appointment with her Ft. Wayne pediatrician, who ordered an EEG and referred us back to her pediatric neurologist, Dr. Joe Ottinger. Dr. O had taken care of Addison when she’d had a grand mal seizure at the age of 2. Dr. Ottinger found nothing abnormal on the EEG so he ordered an MRI.  We went for that the next day.  Before Addison was even done with the MRI, the tech told us we had to go back to Dr. O’s office immediately. 
Dr. Ottinger explained the MRI showed a tennis ball size tumor on the back left side of Addison’s brain that must be removed.  We were all scared.  Dr. Ottinger asked us to wait as he contacted Riley Hospital because Addison would receive the best specialist care there.  He mentioned hoping we could get connected to Dr. Jody Smith, in his opinion, a most excellent pediatric neurosurgeon.  We didn’t know then, but we do now, that “most excellent” is an understatement.   
God was watching over us as Dr. Smith, a very BUSY pediatric neurosurgeon, happened to just have a surgery cancellation that following Monday only if we could come see her for a pre-surgery appointment tomorrow, a Friday. 
So we started sharing Addison’s story with family and making all the plans we could to not only get Addison, Mark and I to Indy for the pre-surgery appointment but even more. Addison’s grandparents, Uncle Brian, Aunt Kelly, and Aunt Tricia were HUGE help. Grandma Misch, Uncle Brian and Aunt Kelly made plans to stay in the extended stay hotel tool we got so that Elle and Christenson were close to us during our time in Indy from the night before surgery until we came home. Aunt Tricia took care of our broken washing machine and on and on. 
On Sunday, Addison stood in front of our ZUM church family and explained the tumor, what Dr. Smith would do on Monday and that she believed God would take care of everything.  That evening all 5 of us loaded up the car and headed for the hotel.  That night there was NOT much sleeping for Addison, her dad or me.  We were all nervous. 
The next morning we went in EARLY to check in for surgery. The front desk man even told us that part of Addison’s fan club was already up in the waiting area.   
She did all of the pre-surgery get ready and finally it was time for us to leave her.  As we walked her to where they would sedate her and do another MRI she had the opportunity to look up to the waiting area and wave to her growing fan club 🙂 She was SO brave! 
We (Mark, Elle, Christenson and I) spent 16 hours waiting with 24 different friends and family members. Eating snacks, taking walks, drinking Coke, playing card games, sharing meals, and waiting.  We cannot thank Riley enough for the top of the hour check ins by the nurse with information about surgery progress. A special thanks must be paid to the surgery nurse who insisted on our behalf that we get a Ronald McDonald in hospital room for the night.  We watched the waiting room fill up and then empty around us.  Addison was the first patient in and the last patient out.  When we FINALLY got to see Dr. Smith after surgery, she still looked like a rock star!  (Her residents looked like they were about to crash!) Dr. Smith shared that the tumor was both solid and vascular but that she was confident she has removed everything and taken care of the spot where the tumor was most attached and growing from.  She explained the tumor had both malignant and benign characteristics and would be sent to Mayo pathology to help determine what the tumor was.  By this time, we where allowed to go back to recovery to be with Addison. She had a crazy hair do done to keep her hair away from her incision.  She told us all kinds of crazy stories about chocolate bunnies and dinosaurs as she came out of the 16 hours of sedation. 
She spent the next 2 nights in pediatric ICU with more great nurses who took great care of her and us.  Her brother and sister, aunts and grandparents took turns coming in with Mark or I to see for themselves our own miracle. We shared our story on FB with our family, friends, community, and school coworkers.  The support of encouraging words was amazing.  I got to sit and read peoples comments to her and let her see all of her likes on our posts. She was gaining strength and balance the whole time, managing pain along the way.  Her body had some major pressure marks on her shins and hip bones from laying on the surgery table for so many hours. These bothered her most. 
Late Wednesday evening she was moved to a room in the new Simon Tower.  It truly was the Hamptons like the PICU nurses had said! The three of us rested there.  The next day she was doing more to get up out of bed, stay wake with all of her fan club visitors, and move around.  She was eating well (and even got some Cheesecake Factory cheesecake from her youth leader Mike and his daughter Abby!) 
On Thursday after a final check in with Dr. Smith and OT AND PT said Addison could go home.  Dr. Smith said she would heal best at home and she was right.  With a spreadsheet to track all the meds she needed for awhile and an air mattress set up so she could be with all of us in the living room we were back at home really resting and healing. 
Once home Addison had an appointment to follow up with PT as she was still experiencing some right side weakness when we left Riley.  At that evaluation her right side actually tested STRONGER than her left side. 

Addison only missed the first 3 days of school (to make her mother happy, not at her choice) and after she got back into school she never skipped a beat.  She did great academically at school and kept up physically as well too.  After Dr. Smith saw Addison for a follow up appointment she was actually released for sports and ran the last 4 meets of the middle school cross country season.  She was amazing, she is amazing. We thank God for our miracle, Dr. Smith and the healing that happened for us at Riley Hospital.