Super smart, sweet, creative, artistic, inventive.
These are just a few words of many that encompass Ben Klooster. He just marched to the beat of his own drum… right into the hearts of many who knew and loved him.
About a month before Ben’s third birthday in November of 2014, Ben’s parents, Peter and Amy, noticed that his left eye seemed to be swelling out a little bit. Ben had never been a sick kid, and Amy was not one to quickly run to the doctor – Ben hadn’t even been on a prescription up to that point in his life! Amy waited about a week before taking him to his pediatrician. She thought it was an infection or something related to the cold he had recently gotten over.
Amy took him in on a Sunday morning and the doctor immediately sent them to the ER for a CT. The CT showed a tumor and Ben was admitted to the ninth floor – the hematology/oncology floor of Helen DeVos Children’s Hospital. That Monday they did a biopsy. Those results came back on Wednesday evening as Rhabdomyosarcoma (a pretty rare cancerous tumor of the soft or connective tissues.) While they were obviously devastated from this news, they were encouraged that this cancer had a clear treatment plan with a 95% cure rate. After another day of testing, Ben was discharged on Thursday evening with a plan to regroup over the weekend and come back on Monday to get his port placed and do his first inpatient chemo. Incidentally, that week Amy suspected that she might be pregnant. She took a test when she got home and, sure enough, baby Sam was on the way. Ben had 9 months of treatment ahead, and Amy had 8 months of pregnancy.
All through the holidays and into that January, Ben went through chemo and radiation. By March of 2015, his scans were completely clear and he was in remission. Treatments continued weekly though, with inpatient stays every three weeks and lab work, as well as nightly injections at home and oral meds in between. There was a clearly defined endpoint with the near promise of a healthy life ahead.
Sam was born in July. Ben wrapped up treatment in August. Scans were still clear, so Ben had his port removed in September. In October, the Kloosters threw a huge “done with cancer” party for everyone who had supported them.
In January of 2016, he had his first post-treatment scan, and they were shocked to learn that the tumor was already back. Half the size of its original presentation and in the same location. They couldn’t do the same treatment. His type of tumor had shown itself to be “chemo resistant”, so Ben started a heavier course of treatment with longer inpatient stays and harsher side effects with a less than 50% cure rate. His tumor responded well for a while.
After a successful tumor resection surgery in June of 2016, Ben continued less intense “maintenance” chemo – all outpatient with regular scans. Scans were considered “stable”, not clear. There was something there but it wasn’t changing, so it was believed to be scar tissue from radiation/surgery/etc.
Ben started pre-school at Legacy Christian School in the fall and continued maintenance treatments. The Kloosters had the goal of stopping those at the end of the school year. His March 2017 scan showed new growth again. The spot had not been scar tissue. This time the Kloosters were told that Ben could continue treatment but chances of cure were about 0%. Their hope was to keep it at bay long enough for some new developments in cancer treatment to advance to the levels Ben needed them to.
A week before Ben started kindergarten, he had another progressive scan and hospice was mentioned for the first time. The tumor’s growth was starting to reach back and was getting dangerously close to important blood vessels that supply the brain. Around Thanksgiving of 2017, Ben began a clinical trial through HDVCH. Near Christmas, Ben lost his vision altogether and was chronically exhausted. He couldn’t hardly make it through half days at school, much less full days. The day after his sixth birthday he suffered stroke-like symptoms and he was taken to the ER. The scan confirmed what they had suspected – the tumor had infiltrated the coratid artery and had not responded successfully at all to the trial drug. The Kloosters had very few options at that point, and they decided to stop putting him through more treatments. His quality of life had been quite low for several weeks and there was no hope for improvement. Ben went home later that night on hospice care.
At 9:30 the morning of January 5th, Ben ran into the arms of Jesus, healthy and whole. The Kloosters were brokenhearted, but relieved that his suffering is over. (Ben had lived with cancer longer than he had lived without it and it was really the only life he knew.) The Kloosters know that Ben is in a place where there are no more medicines, no more pokes, no more cancer and no more tears. “‘He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away’. He who was seated on the throne said, ‘I am making everything new!'” Revelation 21:4-5
Around Christmas, the only thing this tenacious and smart boy would tolerate eating was Chick-fil-A chicken and waffle fries. With such frequent trips to the Chick-fil-A Grand Rapids South location, Ben’s Aunt Kelli reached out to Chick-fil-A owners, Brad and Rena Spurlin to see if they did a frequency discount. Once the Spurlins heard of Ben and his needs, the Spurlins provided Ben with a meal every day and even an extra meal on Saturdays. This extra meal would be refrigerated till Sunday when Chick-fil-A was closed.
The Spurlin’s kindness and generosity did not end there, however. For the luncheon after Ben’s memorial service, they donated chicken and waffle fries. They agreed – it’s what Ben would have wanted. Recently, owner Brad Spurlin, went through the lengthy process to have Helen DeVos Children’s Hospital be considered for a grant through the corporate Chick-fil-A’s Foundation. Also, plans are in the works now to name Chick-fil-A Grand Rapids South’s children’s play area “Ben’s Place”, which will include a plaque with photos and a short story about Ben’s love for Chick-fil-A.
On Thursday, March 1st, with a small gathering of Ben’s family and Brad and Rena on hand, Ron Cook II presented Brad and Rena with the Helping Families Heal Award, along with a bouquet of flowers and donuts for their whole Chick Fil-A team. It was a special time to reflect on Ben’s life, and recognize a company that really went out of their way to help this family heal. Rena mentioned that the most rewarding aspect of their new venture as Chick Fil-A owners has not been the chicken, but the people that they meet and connect with day to day. It is so refreshing to see a couple put such heart into their work and make a difference simply by serving great food and meeting needs that come up along the way.
The Helping Families Heal Award is an initiative by Cook to recognize those in the community who help families heal. We have many well-deserving caregivers who are often deserving of such an award, but we were pleased to be able to recognize and organization that could do the same with what they do best – food! Helping families heal does not need to be relegated to a certain industry, nominees could be hospice workers, pastors, grief counselors, or even a friend or family member who went above and beyond. If you know of an individual or organization that should be considered for this award, please contact us by clicking this link: http://www.cookcares.com/contact-us/contact-us.