2010 Quad Cities Marathon
On September 26, 2010, the Erika Kate Foundation will again participate in the Quad Cities Marathon for the 2nd year in a row. Last year over 90 runners participated in the various races held during the Sunday event including the 5K, Half-Marathon, Marathon & Marathon Relay. EKF was the largest group represented at the event and was honored with a banner at the starting platform and a booth within the post race party area. Many people from the region learned what EKF does and who we help as a result of our participation. This year, we hope to field a larger team of runners and walkers so we’re extending an invitation to everyone to come out and participate as a member of this year’s team. Together we’ll raise awareness and funding for the work of the Erika Kate Foundation.
To participate in the 2010 QC Marathon on behalf of Team EKF:
You must register online for your desired event at this year’s Quad Cities Marathon. You can choose to do the 1 mile walk/run, the 5K, half-marathon, or marathon. Please indicate your intent to participate on behalf of “Team EKF” in your application where it asks to be counted in our organizational total. By being a member of Team EKF, you will pick up or receive a special registration packet including a Team EKF t-shirt we hope you will wear for the race. (You also have the ability to upgrade to a Dri-Fit shirt if you prefer for an extra fee, more details to come on this.)
Please let us know you want to be a part of Team EKF 2010. Sign up here to help us ensure that we’ll have enough packets and t-shirts on hand for race day.
For information on Corporate Sponsorship, please click here.
To download a flyer to share at work, school or church, please click here.
written by Logan’s mom, Heather
I got my first taste of mother’s intuition on November 25, 2009; it was the day of my 20 week ultrasound. The ultrasound is one of those exciting milestones of pregnancy along with hearing your child’s heart beat for the first time and feeling your baby move. However for me, I woke up that morning not wanting to go to the hospital to get the ultrasound. I was feeling scared and nervous because something wasn’t right.
At the ultrasound the Sonographer informed Tony and I we were having a baby boy; whose name we already had, Logan Stephen Johnson. We were so happy! Then the Sonographer went quiet for a while concentrating on his heart, she told us she would return with the doctor. The Doctor told us the heart didn’t look right to him and he was sending us to Pediatric Cardiology to get an Echo on Logan’s heart. It was there that the Cardiologist informed us of Logan’s heart defect. They didn’t have a specific name for this condition because it was rare, but it was a “Double outlet right ventricle, double inlet left ventricle, hypoplastic aorta.” In plain English, Logan’s heart had two outlet valves on the right side of his heart instead of one, and two inlet valves on the left side instead of one, as well as his aorta that took blood to the body was too small. The doctor told us he would need a series of three surgeries, one within the first week of life, the second at around three months, and the final at two years. They told us he wouldn’t be able to be very active and may get tired very easily. My heart sank and the world around me went black, I needed to get out of that room and get air. Tony asked a few questions but decided it would be best to come back in a week, give us time to gather ourselves and think of questions to ask them. We were asked about abortion but to me that was not an option, I had to give Logan a chance. What if it wasn’t as serious as they originally thought? We couldn’t give up on our son.
Check ups after that were more in depth than usual, I had two Non-Stress Tests a week as well as one ultrasound a month to monitor Logan’s progress and growth. On March 25, 2010 I had a scheduled ultrasound where they found some fluid around Logan’s heart. My high risk doctor wanted me to go home and pack to come back to the hospital, she was going to induce me that night. She told me she would rather have Logan out and in the PICU than to wait until 40 weeks and take a chance of the fluid getting worse. After more than 24 hours of labor Logan’s heart rate began to drop, so they took him by Emergency C-Section. Logan was born March 27, 2010 at 9:43 am, he was 7lbs 10 oz and 19½ inches long. After my c-section he went up to the NICU and then transferred to the PICU and I was in recovery. I didn’t get to see my little guy until the next morning due to dizziness and nausea every time I tried to move. When I finally got to go see him he had already been sedated. Logan had numerous wires on him for monitoring, as well as a breathing tube, an NG tube, and an IV. It was so hard to see him hooked up to so many things but I knew we were in the best place and he was being taken care of, plus we had amazing nurses taking care of him. Logan had his first surgery April 2, 2010 he was six days old. He was so strong and made it through the surgery with flying colors. He was still under when he came back up to his room and they had left his chest open in case they would have to go back in within the next couple days. Logan was recovering so well all the nurses said he was a rock star and doing everything faster than expected. Logan got his chest closed on April 5th and came down to the 2JCP inpatient on April 8th. After leaving the PICU Logan was breathing on his own and only had an IV that wasn’t used but it was there in case they needed it, his NG tube and he was down to the three main wires that monitored his heart rate and such. He was doing so well and I got to change diapers, give him a bath, and I got to pick him up and hold him as much as I wanted instead of having to wait for permission and to have people transfer him to me. Logan and I sat in the rocker/recliner in his room and I read to him a lot or would just talk to him. I loved holding my son his personality was amazing and they way he looked at Tony and I made our hearts melt, we were wrapped tight around those little fingers.
Logan’s recovery was going so well, he had a few issues with his heart rate but the doctors weren’t concerned. He had numerous EKG’s, echo’s, and other tests that all came back looking good. On April 16th I asked our doctor about his discharge, they told me he would just need to get his feedings on a regular schedule and he should be able to come home in just a few days. That was great news I was so excited to show him the life outside of the hospital. On April 17th Tony and I were woke up to a phone call from the hospital saying Logan was having trouble breathing and we should come in. On our way to the hospital we got another call asking how far from the hospital we were. Then while we were pulling into the parking ramp we got another call saying we needed to hurry. I pulled into a handicapped spot close to the door and we ran to his room. When we turned down the hall to his room the doctors were walking to meet us. Our doctor told us Logan had trouble breathing this morning and they did CPR for about 45 minutes, but Logan didn’t make it. I felt my knees give out and I almost collapsed, they took us to a meeting room to talk to us about what had happened that morning. I held and kissed my son good-bye on that horrible morning, it was by far the worst day of our lives.
I didn’t know how this could be possible because he was doing so well. Life isn’t always fair by any means but I am so thankful that I got to know that wonderful baby boy if only for three weeks. I miss him so much, he has made me such a strong person. I have put my energy into my work outs and getting ready for the Quad Cities Marathon I plan to participate in with the EKF. I find working out is a helpful tool when I want to rid my body of the anger I hold. Logan was the strongest person I knew and is my hero. I feel that if he could go through what he did, I shouldn’t and can’t complain about anything.
This was by far the hardest thing that Tony and I have had to deal with. I definitely recommend talking to family and friends you can trust your feelings with or finding someone that has went through a similar situation. I am so grateful for every minute I had with my little guy and being able to know him; however it is still extremely difficult to deal with and understand why. I never want to forget but I’m waiting for the pain to ease a little.
“I have seen death, I have held it gently in my arms and I have kissed it good-bye with tear stained cheeks.”
Mommy and Daddy love you Lo!
Mason Strickland was born 3 1/2 weeks early on Nov 30, 2007. His parents, Summer and Mark, took him home from the hospital at 2 days old, thinking he was a healthy little newborn. It wasn’t long before they realized that Mason’s first night at home was not like what they experienced with their other 4 children. On his first night, he fell ill. He did not want to eat and his body temperature was cool. Mason was taken to the pediatrician the next day. Within minutes, an ambulance was called when a pulse could not be detected and his temperature noted to be 88 degrees. What happened at the hospital in the next 30 minutes would be every parent’s nightmare. Mason was quickly put on a warmer to increase his body temp and IV antibiotics were given as a precaution to possible infection. Just as it seemed things were under control, Mason began to flat line on the monitor. A Code Blue was called and as doctors and nurses rushed in, Mason’s parents were ushered out so that the staff could work. It was an agonizing 40 minutes as Mark and Summer waited. They were not sure of the exact cause. Was Mason’s body shutting down due to infection or was there an underlying heart problem? The minutes seem like hours when parents are left to ponder such questions.
Once Mason was stable, the doctors informed his parents that there was a severe problem with the function of his heart. Within two hours, Mason was taken via Life Flight to Primary Children’s Medical Center in Salt Lake City. There, it was learned, that Mason had a variation of Hypoplastic Left Heart Syndrome (HLHS). His mitral valve was so tiny that the blood flow through his left ventricle was very inefficient. In addition, his liver and kidneys were functioning very poorly. In order to help him overcome this defect, Mason would need 3 heart surgeries over time. With the events that had occurred in these first 3 days, it was unclear when the first surgery could be done.
Mason did well in the days to follow, so well in fact that he was able to have the first surgery at just 10 days old. On Dec 10, 2007, Mason had the Norwood with Sano heart surgery. He spent a total of 7 weeks in the hospital, mostly in the PICU, before being able to go home. Mason was reunited with the family but his stay was intermittently interrupted for many reasons. At 4 months old, Mason went into severe tachycardia at home and needed to be taken via Life Flight to Primary Children’s Medical Center from the family’s front lawn. At 6 months old, Mason had his 2nd open heart surgery, the bi-directional Glenn which led to a 2 week stay in the hospital. In addition, there were hospital stays due to pneumonia, H1N1, G-tube surgery, fevers, etc.
In April of 2009 (16 months old), at a routine echo he was diagnosed with heart failure and moderate to severe leaking in his tricuspid valve. Mason’s new diagnosis required additional heart medications and full-time oxygen. His rapid weight loss due to the heart failure necessitated a G-tube button be placed. All these things were done in the hope of improving Mason’s heart function. In August of 2009, it was determined that because there had not been any improvement in his heart function over the previous 5 months, Mason would need a heart transplant. It was then that the process began to get Mason listed for transplant. With his heart in its current condition, Mason would not be able to go on to the 3rd recommended surgery.
On September 3rd 2009, Mason had a pre-transplant heart catheterization. This was routine procedure in order to be listed. During the procedure, it was found that Mason had severe pulmonary vein stenosis. Both of his left pulmonary veins were completed obstructed, with no blood flow between his left lung and his heart. This new information meant that Mason was no longer a candidate for heart transplant. The family was then told that there was nothing more that could be done and that Mason would probably only live for several months before succumbing to his condition.
It is hard to imagine the feeling that Mason’s parents must have had after receiving such news. For them, one of the hardest parts was going home to face the other children, who were very excited for Mason to get a new heart. Mason’s heart transplant had provided new hope to the family. It was a way to get Mason and his mommy home to the family where they belonged. Hearing that transplant was not an option was painful; thinking about the potential outcome was devastating. Like many families, the Stricklands did not give up that easy. They wanted to give Mason every possible chance they could. They owed it to Mason, but they owed it to their other children as well.
The parents learned that they could send Mason’s history to transplant centers that do heart-lung transplants. It was a long shot given his case and current condition that he would be accepted. Indeed, most centers did say Mason was too high risk for a heart-lung transplant. In late 2009, the Stricklands received the answer to their many prayers. Two hospitals stepped forward with a new option. Both suggested that since Mason’s right lung was still very healthy, they could do a heart only transplant to his own one healthy lung. Although a less common procedure and still very risky, the option brought back the feeling of hope that they had before. Mason would have a new chance at life again.
The Stricklands decided that the hospital to do Mason’s transplant would be Lucile Packard Children’s Hospital at Stanford University in Palo Alto, California. In January 2010, Mason was officially accepted by their Board of Transplant Doctors and Surgeons to be a “heart only” recipient. Mason and his mother would have to leave the family and live in Northern California while he waited for his new heart. On February 16, 2010, Mason said goodbye to his dad and siblings and headed to California. He was about to begin his wait for his donor heart to be found. For the family, being apart during this time was very hard. Mason needed to stay in California and for Summer and Mark, it was important that their 4 older children stayed on as normal a schedule as they possibly could. They prayed that the wait would not be too long. They prayed for Mason’s return to health and for the reunion of the family.
In early April, the Stricklands came together as a family in California to celebrate Easter. The children were off from school for break so it provided a perfect opportunity. They were only together a short period when Mason had a mini-stroke and needed to be admitted to the CVICU for monitoring. This meant that Mason would be in the hospital over the Easter weekend. The family was very disappointed that they would not be able to celebrate Easter with Mason as they had planned. What they did not know, was that they were going to get a great gift that weekend. On the evening of April 3, 2010, Mason’s heart failure/ transplant cardiologist came to the CVICU to inform the family that they had a matching donor and Mason would receive his new heart on Easter morning. To the Stricklands, this was an Easter miracle. Mason has since become affectionately nicknamed, Miracle Mason.
Mason’s successful heart transplant has come with many of the mountains that newly transplanted children and families must climb. It is a new way of life with a new set of challenges, many medications and much monitoring. Mason, still in California, has been undergoing routine heart catherizations to check for rejection. There has been a degree of rejection evident in the test results but they are currently trending downward. The Stricklands continue to maintain a positive and healthy outlook for Mason and their entire family. They are confident that their Miracle Mason can get through anything! A quote by Albert Einstein on the family’s blog page sums things up; “There are two ways to live your life – one is as though nothing is a miracle, the other is as though everything is a miracle.” Little Mason Strickland is definitely a miracle.
Baby Esdras was born on November 5, 2008. His prenatal diagnosis meant his coronary vein was not closed. For two months following his birth, he remained at the Children’s Hospital Washington Center in Washington D.C. The hospital was located approximately 20 minutes from their home in Maryland. At just five months old, Esdras had his first heart operation. After the surgery, his heart seemed to be functioning normally. Esdras appeared to advance as a healthy and happy infant.
In January 2010, the Escobars took Esdras to a routine appointment with his cardiologist. Soon after, it seemed Esdras was getting very sick. He was crying a lot and was uncomfortable eating and sleeping. Carlos and Elsa rushed their son to the emergency room in Washington D.C. The doctors felt Esdras had a small infection and needed to be admitted in order to further evaluate the situation.
Two days later, Esdras went into cardiac arrest twice. At this time, the medical staff informed Carlos and Elsa that it was necessary for Esdras to receive a heart transplant. Things evolved very quickly and the Escobars were afraid and overwhelmed. They were sent to Childrens Hospital of Pittsburgh in order to be evaluated in preparation for transplant qualification. Esdras was assessed and placed on the transplant list.
The waiting process began in January, but it would be nearly two months before they would hear anything. At four o’clock in the morning on March 23, 2010, Carlos received a call that a donor had been found. He drove immediately from Maryland to Pittsburgh. Esdras emerged from the operating room after six long hours with a fully functioning heart. Carlos and Elsa wept with happiness.
The process did not end with a successful transplant. The Escobar family has to work hard to keep their nineteen month old safe from infections or setbacks. Keeping their family afloat financially and emotionally during this frightening time has been a struggle for the Escobars. Being matched up with the Erika Kate Foundation through social worker, Laura Stabile, came at the right time says Esdras’s daddy, “We are Christians and this has helped us very much because God has given us the strength to go on. Finding the Erika Kate Foundation has blessed us. EKF helped us when we needed it. God bless this foundation and continue to help other families. Thank you for everything.” The Erika Kate Foundation has been grateful to utilize the talents of Erika’s aunt, RaeAnn Latko, to translate for and work with the Escobars.
Esdras remains in Pittsburgh, but seems to be doing much better. With the support and prayers of Erika Kate Foundation supporters and his strong family, the future for little Esdras and his healthy heart looks very bright.
Lily Evans: Sugar & Spice
Not many people can say they have faced the challenges that Lily Evans has had to endure over the past eight years. Lily is a sweet, compassionate, and remarkable young lady who has developed much strength and spirit while learning some hard lessons in this life. As a result of her ongoing journey with heart disease, Lily has touched the hearts and lives of many people.
Lillian Evans was born on February 15, 2002, in Grand Rapids, Michigan. She weighed six pounds, six ounces and was known as “Princess Lily” in the nursery. She was a beautiful baby with healthy color and a hearty cry. With the exception of frequent ear infections, she was a good and healthy baby overall. She learned to crawl at six months and was always smiling. Her mom, Sue remembers her as a “chubby little girl with petite features.” Lily was seen only by the family physician until she was fifteen months old, at which point she was seen by a specialist and diagnosed with Tetralogy of Fallot and Pulmonary Atresia, two complex congenital heart defects.
Lily went to the University of Michigan for her first two open-heart surgeries at eighteen and twenty-four months of age. The latter surgery left her with one-third of her right lung function, and Lily was placed on ECMO for fourteen days. She was given only a two percent chance of survival at the time. Due to a serious concurrent infection in her chest cavity, she was not a candidate for transplantation at that time.
Lily and her family continued to struggle daily with her heart condition for two long years before they finally had a breakthrough. They consulted a cardiologist in California who proposed a heart/double lung transplant as her best hope for a better life. After additional consultations with cardiothoracic teams at Lucille Packard Children’s Hospital in Palo Alto, California and St. Louis Children’s Hospital, the Evan’s family turned to the team at Children’s Hospital of Pittsburgh for Lily’s transplant operation and post-transplant care. The family traveled regularly from Grand Rapids to Pittsburgh for eleven months so Lily could receive immunosuppressive therapy to reduce the chance of her body rejecting the new organs. During that time, she remained very ill, requiring supplemental oxygen and sleeping 20 hours a day.
Lily was placed on the transplant list in December 2006 and got “the call” on November 17, 2007. She was flown to the hospital from her home in Michigan and underwent the ten hour transplant operation. The first post-operative week went well for her; but then she started having some major problems with rejection and lung diaphragm issues. She ended up staying in the ICU for over 100 days with a much less desirable outcome than anyone had anticipated.
Lily has fought for the last two and a half years to overcome all sorts of crazy post-transplant occurrences and complications. Because of the medical challenges she was facing after her transplant, Lily’s family decided they needed to move closer to Pittsburgh. They did so in June 2009, leaving behind their extended family and friends in Michigan. Lily was doing reasonably well. Lily’s two brothers, Luke and Logan, were being well cared for by their aunt, and Lily’s father, Matt, was able to receive a job transfer allowing him to continue providing for the family and paying the bills. Lily’s mom decided not to work outside the home and made Lily’s care her first priority. Lily was able to start kindergarten in the fall of 2009 for the third year.
Day to day living with a life threatening heart disease has taken a toll on the Evan’s family. Over the course of the last six years of fighting for Lily’s life, the family has long since exhausted all of their savings and are frequently overwhelmed by day-to-day expenses. The Erika Kate Foundation has been able to enter into Lily’s journey and help cover some of their current expenses. Through EKF, the students and staff at Mulberry Elementary School in Muscatine, Iowa were able to raise more than enough money to pay for one month’s rent for Lily’s family. Bradford Woods Elementary School, in Wexford, Pennsylvania, has given their support by holding a “Cookie Walk”. Staff working at the school brought in cookies to sell while families toured the school, looking at students’ artwork.
Sue, Lily’s mom, shared, “I wish heart disease hadn’t taken so much from us, but I would never give up on my daughter… We are overwhelmed by the generous nature of the people that surround our family with prayers and love.”
Lily’s journey continues, and the family is currently enjoying some good days together in their home outside of Pittsburgh. In early June, the Evans family will be heading to the east coast for a beach vacation, complements of an organization called “Believe In Tomorrow”. “Believe In Tomorrow” provides hospital and respite housing services to critically ill children and their families. We wish Lily and her family well as they spend this special time together, playing in the sand and soaking up the sunshine. May God bless you with beautiful moments together.
