Luke’s Squad: What I Have Learned from a Childhood Hero
Allow me a moment of your time to deter from my normal blog material to shed light and bring awareness to DIPG. What’s DIPG? I’ll get to that. But first a short background on why I feel it is important to shed some light on why DIPG and how this particular story is touching my heart.
Nearly twenty years ago, I made my home in Montgomery County Maryland, after relocating here from New Jersey. I started serving at Timpano Italian Chophouse on Rockville Pike. Back then, Timpano and Fridays were under the same umbrella ownership, so one day I transferred from Timpano to Fridays.
Here is where my life had / has changed forever. At Fridays, I met the man who would become my husband and for this, I am eternally thankful. I met my best friend, Bonnie, and I formed several relationships with a ton of incredible people – many who remain in my life and a dozen, or so, who we (my husband and I) are blessed to call family.
I am a firm believer that we “don’t meet people by accident, they are meant to cross our paths for a reason.” –Unknown
Everything happens for a reason, whether we know the reason or not. Sometimes people come into our lives and for that we are truly blessed, lucky and fortunate. When someone is in our life for a reason, it is usually to meet a need we have expressed outwardly or inward. They are meant to serve some sort of purpose, to teach us a lesson, or to help us figure out who we are and what we want to become. There are no coincidences. People do not just randomly appear into our lives, there is a reason behind it.
Where am I going with this? Every day I am more grateful for the people that enter my life. Through my position at the Gaithersburg-Germantown Chamber, I have been lucky enough to meet a plethora of people with whom I would never think that I would associate. These people, like my Fridays family, have become some of the most meaningful people in my life. Sometimes, it is the message; in the words they write or in the words they speak. Sometimes, I am meant to connect with the person and open up to them in order to grow as a person. Sometimes, I am meant to meet someone to inspire them. Sometimes, I am meant to meet someone to become a better version of myself.
While at Fridays, I had the opportunity to work with Rich Engler. One of the nicest, most sincere, honest people you will encounter in this world (yay they do exist). He’s married now to this incredibly kind, good-nature, amazing women, Nancy. And they have three beautiful children, Lucy (9), Amber (7), & Luke (6). These five people continually inspire me each and every day.
My husband and I don’t see them as often as we would like; they live in Olney (it’s really not that far). But I feel that a little piece of them is in my heart and I carry them with me daily. I believe – now – these people were sent to me to inspire me.
So twenty years ago we all worked together. Rich, my husband, a plethora of good friends and me; but as time passes so do the friendships. People get married, have kids, move away, etc., etc. But our “Fridays Family” will always remain friends and have a bond that no one can ever take away.
Lucky for me, Richie, my husband and I play in a fantasy football league together. It’s here where Richie and I call one another “nemesis” and eagerly await our annual “nemesis bowl”, when our teams battle it out. Yeah, fantasy football, it allows us to remain in touch for at least five months a year.
Recently, the Engler Family has remained in our lives a little more than usual. And trust me, this is okay. My husband and I knew that Richie and Nancy had three beautiful children, but we really didn’t know the “kids” very well, until now…
Engler Family – Nancy, Lucy, Luke, Rich & Amber. Luke is a 6 year-old child diagnosed with an incurable cancer.
Life throws many obstacles at us. In October, the Engler family was thrown a huge obstacle. Their youngest son, Luke, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). It is a rare form of a pediatric brain tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the middle brain stem and they grow amidst the nerves, and therefore are not able to be surgically removed.
When Rich and Nancy’s son was diagnosed with this rare pediatric brain tumor obviously they were devastated (and still are). They were in desperate need of answers,
Nearly every day one child in the United States is diagnosed with DIPG and another child dies from it. The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies. (from St. Jude’s Children Hospital)
What exactly is happening to Luke? DIPG affects the middle portion of the brainstem, rendering nervous system function impossible. Symptoms include double vision, inability to close the eyelids completely, dropping one side of the face, and difficulty chewing and swallowing.
Nancy and Rich are working with amazing doctors down at Children’s Hospital in Washington, D.C. Luke underwent a 6-week radiation treatment at Sibley. He completed 29 treatments on November 22, 2017. They have received the results of his biopsy to understand the molecular make up of his tumor, allowing them to determine the next steps for treatment which will be part of a clinical trial.
“While there is no cure today for DIPG, we are hopeful and have faith that Luke is getting some of the best care possible in the world and have decided to expect miracles,” said Rich Engler.
The Engler’s are the type of people that are there just for you. These type of people are far and few. We live in a world that is so self-absorbed it’s hard to find many of these types of friends. If you find two or three in your entire life, you are beyond blessed. These types of people are solely there for you. They’re the type of people that if you lost everything you had and could not offer anything, they would be there. These are the type of friends that are there when you go through heartbreaks, sickness, homelessness, poverty, depression, loss of a loved one, and everything else. You can’t buy these types of friends and you cannot develop these friends. When this type of friend comes into your life, cherish them, appreciate them, and do all you can to nurture that friendship.
Being the “just there for you” people, when Luke was first diagnosed thousands and thousands of people opened their hearts and wallets to the Engler family. I may not have children, but I can only imagine that there is nothing more tragic than a child being diagnosed with cancer. My mother, father and grandmother were all diagnosed with cancer and it was heartbreaking for me. Being diagnosed with a deadly cancer diagnosis as a child, simply unimaginable.
Luke brings so much joy to everyone he meets with his beautiful smile. He loves to play games with his sisters, watch movies, especially the Lego movie, loves the Capitals and Ovi, his classmates, video games, Legos, Star Wars, eating at his favorite restaurant Uncle Julio’s in the Rio, and playing outside with his pup, Remedy.
Luke inspires those who know him with his bravery, strength, and love of life. He is a hero. Children and teens treated for cancer undergo an overwhelming number of medical procedures. Faced with drug infusions, blood transfusions, surgery, bone marrow aspirates, lumbar punctures, finger pokes, and other invasive procedures, they often have to remain in the hospital for extended stays and sometimes travel to other cities for treatment. Any child with cancer – they are all heroes.
But I think the truest part of this story is that all five members of the Engler family are heroes. Each day this family wakes up with a new challenge and each day this family has the strength and love to face any challenge together.
I want to share this with you – Nancy, Lucy and Luke took Remedy to the vet and while heading there, Luke said to Nancy, “Iron sharpens iron, like Sensei sharpens student.” Nancy asked what that meant. Luke said, “It means, face your fears, but never face them alone.” I agree Luke; you all are not alone but a cohesive unit fighting together in unity and love.
However, a new obstacle has risen for the Engler family. This 6 year-old child diagnosed with an incurable cancer, that has an expert team of physicians developing a treatment plan based off the biology of his tumor, is now told by the insurance company that the treatment is not medically necessary.
“We were hopeful that we would be starting the clinical trial we were selected for down at Children’s National Medical Center right before or just after Christmas, but have been running into significant delays,” said Rich Engler. “The delays aren’t from Children’s, far from it, they are tied to two words I have come to take exception with and truly dislike medical necessity. These are the words that have consumed this past week and that our insurance company, Anthem BCBS, has used to justify denying coverage of the medications selected for Luke.”
Different therapies could help Luke in a clinical trial setting, but the healthcare and insurance system has denied access to these medications despite two appeals from a world renowned team of medical professionals here in D.C.
“Our doctors should decide what medications and when they are used, not an insurance company working a set of regulations about what is a medical necessity” said Rich Engler.
You see DIPG doesn’t have a cure, doesn’t have anything that is considered a standard protocol beyond radiation treatments and steroids. Neither of which have proved to defeat DIPG and eradicate the tumor. The trial uses a molecular analysis of Luke’s tumor to specifically target the pathways that are active for Luke. What is unique about this trial is that it isn’t just testing a specific medication to see if it works and isn’t just using one medication. The trial was written in a way that let the doctors choose whatever medication they felt would provide the best opportunity to fight the tumor and would do so with up to a combination of four different medications.
Luke and his parents have been working with Dr. Lindsay Kilburn, a Pediatric Hematology-Oncology Doctor, and her team as they prepare to start a clinical trial that will use a combination of four different medications to attack the active pathways in Luke’s tumor. Luke’s tumor shows several mutations that are only present in about 10-15 percent of DIPG tumors, which on the surface seemed scary, but turns out to be a positive thing, as there are several medications that have shown positive traction in other cancer trials with those mutations.
Luke’s family has gathered a super hero squad together as Luke takes on his challenge of defeating DIPG. Surrounded by love, prayer and support, #LukesSquad follows and takes on this journey with Luke. Please consider joining or supporting #LukesSquad. And please write to your Senators and Legislators to share stories and ensure that no family has to undergo heartache during an already insurmountable challenge of having a child diagnosed with an incurable cancer.
Luke is in our lives for a reason. Sometimes real superheroes live in the hearts of small children diagnosed with cancer. He’s still going to dance and have fun. His resilience challenges the darkness and dazzles those of us who watch his light. There is no gloom or doom within him. And I strongly feel the reason why Luke was brought into my life; so I could learn something from him….perseverance.
I hope this story raised awareness of a horrible disease that steals hundreds of young lives every single year.
Please follow Luke’s journey
Luke Engler Caring Page: https://www.youcaring.com/lukeengler-968508/update/0#.WluVZb_OhVg.twitter
Facebook Page: https://www.facebook.com/LukesSquad
DIPG is diagnosed 200-400 times per year and is one of the more difficult brain tumors to treat due to its location on the stem of the brain. Recent advances in research have identified possible effective treatment options. To learn more about DIPG please visit: https://www.defeatdipg.org/
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