Our Family of Blessings. Original blog date May 21, 2010

Our Family of Blessings: Summary of my family

by Kelly Essem Whistler on Friday, May 21, 2010 at 12:21pm

I was asked to write a summary of our family, and thougt I'd share it on here with you:

Children are our Blessings in our life
At first glance, we may seem like the typical American family.
We are an educated family of 6. Our oldest son, Steve (17), is a junior in high school who loves baseball, welding, Nascar, and engineering. He has a part time job, and keeps his grades a priority, even in honors physics. Jacob (10) has a high IQ and has a unique ability in figuring things out while observing things all around him. He taught himself to ride a 2 wheel bike at 3 years old, and continues his love of bike riding. He loves to submit himself to an imaginary world while building train sets and is a natural fisherman. Nicholas (nicknamed Niko) (3) is our active little boy who shares a love of trains with his brother, and has a huge heart for helping others (no matter their age). Niko loves books, cuddle time, and has a desire to follow his older brothers whom adore him completely. Kayli (1) smiles, loves her baths, and has a spirit about her that has taught our family and the community so much, without even speaking a word. Although we interact, dream and love like a normal family, our circumstances are anything but typical. Each of our blessings has a serious - at times even life-threatening - medical condition.
One year old Kayli, was born with Edwards syndrome (Trisomy 18), a rare genetic disorder caused by extra material on the 18th chromosome. Kayli already has beaten the odds - half of all babies with the disorder are stillborn - only 10 percent live to their first birthdays. Kayli has certainly proven medical knowledge is disadvantaged when up against faith in God’s plan. She has surived and then thrived through open heart surgery at 4 months of age, a 32 minute cardiac arrest, endocarditis (infection of the heart), sepsis (an blood infection), a nursing accident that resulted in a trach, a surgical accident whereas the surgeon placed a feeding tube in Kayli’s colon instead of the proper placement in her stomach, which resulted in fecal pneumonia, additional surgeries, and a large abdominal hernia.
Niko (Nicholas) has an impressive, inoperable brain tumor , set in the Pons and Medula of his brain stem, and deep in the Cerebellum. Niko was originally diagnosed with Ganglioglioma (cancer) Sept. 15th of 2008. To confirm this diagnosis, Niko had a craniotomy for a biopsy. Loyola neurosurgeons, and Children’s Hospital of Philladelphia (CHOP) neurosurgeons concurred with the diagnosis upon examining the biopsy slides. Doctors in Chicagoland area, and at CHOP are now baffled with Niko’s tumor because although it was diagnosed cancerous…..it is not growing! Niko once lost his words, fell a lot, and woke up one day confused when we told him he knew how to go potty on the toilet (he no longer was potty trained). Now, he has regained words (although he is sometimes difficult to understand), is potty trained again, and wears braces to help his equilibrium difficulties when walking. Niko has a port in his chest that was to be used for chemo treatments. He has not had to endure the chemo treatments yet, as he is fighting the tumor on his own terms! Niko’s current treatments consist of port flushes every month, MRIs every 3 months (to monitor tumor growth), and a vigorous IEP schedule working to adapt his speech and motor skills challenges. Niko is very tolerant of his frequent trips to Loyola, and effortlessly shows us his amazing ability to adapt to his unique life challenges. Niko’s spirit inspires many people, and thus, he was chosen as a poster child for Make A Wish with Panera Bread a partner in sponsorship!
Brother Jacob, has Eosinophilic Esophagitis (EOE), which currently has no known treatment or cure. EOE is an abnormal number of white blood cells in the esophagus that causes swelling, and difficulties swallowing. The EOE is deteriating Jacob’s esophagus and is causing considerable scarring. With considerable scarring, comes a pronounced risk of cancer. Jacob was recently in a case study to help find a treatment for this condition. He is our hero! The trial medication did not help Jacob, but that did not deter him from helping others. Jacob also has mild autism (PDD) which challenges is social abilities, and severe attention deficit hyperactivity disorder (ADHD). In addition to his ADHD impulsivity, he has minimal natural consequences because he also adapts to Sensory Integration Dysfunction which limits his ability to feel pain triggers. Jacob’s life was threatened again just last year, because he had appendicitis and was not able to tell us the typical pain symptoms of the life threatening condition.
Eldest brother, Steve, has degenerative disc disease, which caused him to break his back while playing baseball two years ago. Degenerative Disc disease is not commonly found in patients younger than in their 70s. Steve was has endured 5 spine surgeries, and MRSA of the bone (from surgery). We almost lost Steve to MRSA because he is allergic to the two known antibiotics that fight the staph infection resistant to antibiotics. Steve will always be limited in his physical abilities. Steve continues to strive for his best in everything he does! Although he loves to work with his hands, he is researching how best to apply his great gift to retain academic knowledge and still apply his need to be hands on, with the limitations he adapts to.
I, Mom, am a former social worker, and cannot think about returning to work until the frequent surgeries required for my children are over. I have also been challenged medically of recent. I have a mystical MS diagnosis, with an abundance of documented brain lesions. Upon doing a spinal tap for the MS diagnosis, the neurologist and infectious disease doctors have encountered an inexplicable condition that appears to be chronic. I am currently undergoing additional tests to figure out the extent of my condition.
Our family has adapted to the scary hospital visits while one parent comforts the hospitalized child (never leaving them to endure the visit alone), and the other parent acts as a single parent at home. We often wonder how we survive the draining medical challenges and our children's growing medical expenses, then apply our faith and trust in the Lord. We have recently (fortunately, temporarily) lost our private insurance, due to my husband’s lack of working hours (he is in a union). Rob was laid off, due to the falling economy. Fortunately for our family, he is working again and we are hoping to get his private insurance again in Oct. 2010. We have sold many of our possessions at yard sales last year. We choose not to burden our community with our challenges, but would rather share our story to spread our faith in God, and loving support for our inspirational children, we call BLESSINGS. Our family is trying to focus on the positives in the midst of so much uncertainty.
The following is a quote from a newspaper article written about our family:
"Despite their struggles - perhaps because of them - the family is a loving, giving, tight-knit group. During one of Kayli’s frequent ER visits, Jacob wrote his sister a note telling her how much he loved her, and Steve sewed her a blanket. "Each one of our kids has adapted to the challenges in their life. They are resilient, and they are blessings," Kelly says. "We are just trying to survive and to keep it positive."