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Isaac’s Story

GOSHEN, Ind., USA - Isaac Steiner, age 7, died on March 6, 2013 after a 21-month journey with desmoplastic medulloblastoma (brain cancer).  Isaac was loved and cared for by many - including his family, friends, medical professionals and supporters - and we affectionately named this group the "Isaac Nation."  

Even though Isaac is no longer with us, we still honor Isaac's legacy by actively posting various Steiner family milestones, memories and pediatric cancer awareness issues on Isaac's memorial Facebook page ( ).  Feel free to follow us, "like" this page and share with others.  You do not need to be a member of Facebook to view this page.

Isaac's parents, Rob and Sarah, journaled extensively on this Caring Bridge site during Isaac's illness.  Feel free to read the journals, view pictures and sign the guestbook.  While we may not be as active on this site after Isaac's death, we still check in from time to time.

Isaac's obituary, written by his mother:

Isaac Ray Steiner, 7, was born on January 23, 2006.  He died at Hospice House in Elkhart on March 6 after a twenty-one month journey with cancer.  The second of three sons, Isaac was welcomed into a loving home by his parents, Rob and Sarah, and older brother Jonah.  Isaac became a big brother when Eli was born.  All survive at home but are heartbroken by the loss of their dear son and brother.

Isaac was a student at Jefferson Elementary School where he completed kindergarten with Mrs. Tricia Brickner in the spring of 2012 and spent nine weeks in first grade with Mrs. Sara Walker in the fall of 2012.  His greatest desire was to be a regular boy and both of his teachers treated him with great love and normalcy, despite his diagnosis.  

Isaac accomplished much in his short life.  He fulfilled dreams of traveling with his family and visited nineteen states.  He got to dip his feet in the Pacific Ocean and the Gulf of Mexico.  He loved camping and eagerly fished with both of his grandfathers.  His favorite vacation was his Make-A-Wish trip to Orlando, Florida in October 2012.  There he enjoyed staying at Give Kids the World and visiting Disney World and Universal Studios.

Isaac became a true Lego Master.  His Lego collection has over 78,000 bricks, consisting of sets that were gifts from friends, strangers and even from the LEGO company. LEGO was so touched by Isaac’s story and building talents that they awarded Isaac the honorary title of Master Model Designer and Builder.  Isaac’s love of Legos and ability to build complicated sets while sick inspired young and old alike.

There was, however, so much more to Isaac than Legos.  He was a collector of many things, including rocks which were sent to him from around the world, and treasures, which he stored in a special wooden box.  He also loved stories about the triumph of good over evil and was especially drawn to Star Wars, The Hobbit, The Lord of the Rings trilogy, Harry Potter and the Chronicles of Narnia. Isaac often commented that, “There are no bad people - people are good on the inside.”

Isaac took a stuffed dog with him to his cancer treatments and most days to school.  Hugging his furry friends helped him feel better during times when he was scared or missed his mom.  After his cancer returned in November many people worked together to bring a real puppy to Isaac’s home.  Nipper brought many smiles and remarks of, “Aww...he’s so cute” to Isaac’s life during Isaac’s final months.

Along with his immediate family, Isaac is survived by his Grandparents (Wes and Margaret Steiner of Goshen and Ken and Janice Burkholder of Boise, Idaho), Great Grandmother (Helen Mann of Goshen) Aunts and Uncles (Suzanne and Kraig Roth, Hillary and Nate Bishop), Godparents (Kris and Peter Gingerich) and Cousins (Austin and Catherine Steward; Juniper, George and Jasmine Bishop; Emma and Andrew Gingerich), as well as many extended family members around the country.   Isaac attended Belmont Mennonite Church in Elkhart from birth.  His church family cared deeply for Isaac and are a changed community by his death.

Isaac was lovingly cared for by his doctors and nurses at Memorial Children’s Hospital in South Bend, Riley Hospital for Children in Indianapolis and Center for Hospice Care in Elkhart.  Upon awaking after his first major surgery in June 2011, Isaac told his parents that he could feel “Jesus and His nurses” with him.  In this spirit, in lieu of flowers, memorial contributions can be given to the Isaac R. Steiner Scholarship Endowment Fund at Goshen College, which will award scholarships to nursing students in honor of Isaac.  

Family Visitation will take place on Friday, March 15 from 2-4 and 6-8 in the Fellowship Hall at College Mennonite Church in Goshen.  A Memorial Service remembering Isaac’s life will be held Saturday, March 16 at 3pm at College Mennonite Church following a private burial.  Isaac was a young child and much thought and care have gone into making the visitation and memorial service a special time for children who knew Isaac.

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Timeline of Isaac's illness:
On May 18, 2011, Isaac first presented symptoms of his illness by complaining of a headache and vomiting. Over the next 2.5 weeks, Isaac's headaches and vomiting progressed. During this time, Sarah and Isaac made multiple trips to the pediatrician and ultimately, late in the afternoon on Friday, June 3, 2011, a CT Scan performed at Elkhart General Hospital revealed a 3cm by 4cm tumor on his brain. Isaac was immediately airlifted by helicopter from Elkhart Municpal Airport to Riley Hospital for Children in Indianapolis.  

Isaac was diagnosed with brain cancer. While at Riley, a surgeon removed the tumor and 11 days later, Isaac was at home building the AT-AT Walker Star Wars LEGO set. 

In July 2011, Isaac and his family temporarily moved to Bloomington, IN in order for Isaac to undergo a series of 31 proton-beam radiation treatments at the Proton Center. Upon completion of that milestone, Isaac built the Death Star Star Wars LEGO set. 

Isaac's treatment plan also included 8 six-week cycles of chemotherapy, administered for the most part at Memorial Hospital in South Bend, IN, as well as consuming just about every Star Wars LEGO set in current production - amassing over 80,000 bricks in our family's collection! LEGOs were extremely therapeutic for Isaac. 

On September 11, 2012 Isaac completed his treatment plan and a full head and spine MRI showed his body was cancer free. Isaac was a cancer survivor and took his family on a Make-A-Wish Trip to Disney in mid-October, staying at Give Kids The World Village and touring Legoland, Hollywood Studios, Universal Studios, Magic Kingdom, Animal Kingdom and Epcot. 

On November 8, 2012, just a little over 8-weeks after Isaac received his clean bill of health, cancer struck again, this time aggressively attacking his spinal column and brain, causing paralysis from the waist down and a terminal diagnosis.   

Isaac's final months, weeks and days were spent under the care of Hospice, living at home in a make-shift bedroom in our basement, surrounded by the things he loved - his family, his puppy Nipper, LEGOs, stuffed animals and countless hours watching his favorite movies. 

Isaac's health eventually deteriorated to the point where we could no longer care for him at home.  Three days after moving him into Hospice House, Isaac squeezed his mother's hand, took one last breath and died on March 6, 2013 at 4:40pm.