Sarah Foody

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,

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.

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!

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!

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 Children Hospital.

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. And when we have completed treatment on July 31, 2015 Caleb will go back to Riley to get port removed.

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 last 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. Bring on July 31, 2015!