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Eleanor Ewoldt, mom to Chase, patient of Lurie Children’s Hospital
Sometimes things change suddenly.
Our family had just such a sudden change on a July morning in 2012. It happened before the sun rose. We discovered Chase, our third of four children, having a seizure, and were informed by an emergency room doctor that our two-year-old son had “a large mass” on his brain.
Within hours of those words, Chase was on an ambulance transport to Lurie Children’s Hospital. We left the rest of our children behind as we held Chase and began a fast and controlled free-fall into significant brain surgery and treatment options. They gave him less than a 20% chance and most agree that the number was generous. His cancer had spread before it was discovered, the cure rate even for non-spread was low, and the treatment was so epic and difficult that survival would take a miracle.
But survive it he did.
He’s gone rounds and years up against chemotherapies, surgeries, radiation, transfusions, complications, and even a second cancer. He struggles, but he lives and that is because Lurie Children’s keeps fighting for him.
We can move forward because Lurie Children’s walks beside us.
Yael Frankel, mom to Ari, former patient of Lurie Children’s
Our son Ari (turning 5 in a few weeks) was diagnosed with a heart arrhythmia, Supraventricular Tachycardia (SVT) at 12 months old. We were in the right place at the right time, at his one year old check up with the pediatrician his heart rate was 220 beats per minute. While normally SVT is easy to manage and a lot of kids are lucky enough to outgrow it, Ari didn’t present as a classic textbook case.
As it turns out, Ari had a very rare and notoriously hard to treat form of SVT. Ari had ten short inpatient stays in the Cardiac Care Unit, for the initiation and increase of various medications to help control his heart rhythm and rate. At a minimum, Ari was seen outpatient quarterly and often had cardiac monitoring and labs drawn. While it came years earlier than we expected, when Ari was 3.5 years old he had a successful cardiac catheter ablation procedure. We will never forget the moment when he woke up from the anesthesia and his electrophysiologist, Dr. Sabrina Tsao, said to him “Ari, I fixed your heart!”
While the world we were introduced to when he was just twelve months old was scary and sad at times, we quickly learned it was also one that is filled with so much beauty – kind compassionate people, exceptional caregivers, an amazing and supportive community, and most importantly so many happy kids. I tell everyone about Lurie Children’s incredible mission of not only treating the patients, but truly caring for the entire family.
We are forever grateful to Lurie Children’s wonderful Electrophysiologists, Cardiologists, APNs, Nurses, CNAs and Techs in the cardiology department and Drs and Nurses in the Emergency Department. To this day, people in the cardiology department recognize and remember Ari by name and reputation and we know how invested everyone is in his continued care.
Nicole Simonds, mom to Parker, patient of Lurie Children’s
Lurie Children’s Hospital will always be a very special place for our family. My son Parker was born next door at Prentice Women’s Hospital, and after a brief 5 day NICU stay we were discharged with what we thought was a healthy baby boy. What we didn’t know at the time was that our son was born with complex medical issues that would soon take us through many different specialists across Lurie Children’s.
From the day we brought Parker home he never had a good check up at the pediatrician. At his one year check up we realized things were not going in the right direction for Parker. He was originally a 10lb baby who was now 0% for height and weight on the growth charts. By 18 months of age Parker was confirmed to have three congenital birth defects and several other medical issues that had and would need treatment. The most serious of Parker’s issues were two heart defects, one of which meant that Parker was not producing growth hormone and therefore not growing properly.
Between the ages of one and two Parker went to Lurie Children’s almost monthly for different appointments across ENT, Cardiology and Endocrinology. We credit our Pediatrician Dr. Allison Foster and our Endocrinologist, Dr. Jill Sammis with saving Parker’s life. Their combined acknowledgements and aggressiveness from an early age put Parker on the right path for the treatments he needed.
From age 2-3 we were in treatment mode and living at home in a bubble trying to keep Parker well. We like to joke we’ve been social distancing for the past four years of our lives! Last summer at age 3 1/2 Parker had Open Heart Surgery at Lurie Children’s Hospital to correct his heart defects.
Our Surgeon, Dr. Carl Backer and Cardiologist Dr. Justin Uhl were both amazing as was the entire Cardia Care Team on the CCU Floor. His surgery was a success and our care in the CCU was incredible. Parker will continue to receive care at Lurie Children’s until he is eighteen and no longer needs the help of growth hormone shots. He’ll continue to see cardiology annually as well. We will always be grateful to all of the doctors, nurses, lab technicians and other staff who continue to provide our family with the best care possible. We don’t know where we would be without them.
Move for Kids, presented by Hub Group, is a day for our community to come together on behalf of the children we care about. Participation is virtual, with all activities this year taking place online. Registration is free and anyone can participate. We encourage all participants to fundraise on behalf of the patients, families and caregivers who need your support now more than ever.
Every dollar raised will benefit the hospital’s COVID-19 Support Fund, ensuring that children have access to the healthcare they deserve, that our workforce remains safe and healthy and that we work with partners to secure the supplies required to deliver exceptional care to the children and families we serve.
For more information on this incredible fundraiser, CLICK HERE.