Because of Bentley
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Bentley was diagnosed with stage 4 high risk neuroblastoma on December 11th 2016, after weeks of going to our pediatrician, and multiple different emergency rooms. The weeks leading up to diagnosis were hell. Bentley slowly stopped eating and shortly after he stopped drinking as well. He would go from sleeping in bed to the couch and fall back to sleep. After weeks of various doctors and urgent care places trying to figure out what was wrong, Bentley was ambulanced to Children’s, where I rode in the back of the ambulance with him. All I could do is cry, scared of what was to come... what was happening?
We got to Children’s, where more blood work was taken, X-rays and a lot of waiting. We kept getting told everything was normal. They had no answers. But this time I wasn’t leaving that easy. I fought for more. Just do something, get my baby back. After hours of questions, finally the doctor requested an ultrasound of his abdomen. She did every picture the doctor requested and jokingly said “this was by far the easiest ultrasound ever ever done” seeing as it was then 4am and Bent had fallen asleep. As she was taking her last few pictures, Bent woke up and went to reach for me, and as he reached up the tech's probe slid. She asked if I would allow her to take further pictures. Of course I agreed. We waited in the emergency room. Hours went by. I held Bent and rocked him back to sleep. And a quiet knock on the door, slowly the door opens. It was the doctor. She grabbed my hand and the words I’ll never forget rolled out of her mouth. “I am so sorry, but we found a mass on Bentley’s right adrenal gland.” “What’s that mean?” I quickly interrupted. “I’m sorry to tell you this. Bentley has cancer.” I began to freak out, how? What do you mean? Are you sure? Is that even possible? Why? Why him? He’s only 2 1/2.
That day, our whole world changed. We went from being overly excited about expanding our family from the 3 of us to 4, to worrying every day if we would still be the three of us the next morning. We immediately went in for surgery to get a central line, to start the process of making health decisions no parent should ever have to make, to allow poisonous chemicals into our little boy in hopes to give him another chance. To this day, Bentley has had 19 rounds of high dose chemotherapies, 5 line infections and removals due to almost losing him because his body became immune to the antibiotics, 14 cycles of radiation, 2 major tumor resection surgeries, 7 cycles of humanized 3f8 which included chemotherapy and 2 of humanized 3f8 without chemo, 2 rounds of MIBG therapy, multiple X-rays, CT scans, bone marrow aspirations, line, and admissions to the hospital.
We're unaware what the future will be. We're forced to make these decisions daily in hopes to give our son the best possible chance at life. But as I sit back and I think of everything my poor baby has gone through in his short amount of time, is it really a life to live? Witnessing your child near death, holding onto life many moments, the torture, the pain, sounds like the worst possible experience one can imagine, right? Sadly for us and many other families - we don't imagine this, this is what we call life. Bentley will never live the life of a normal child, no matter how hard we try. Because regardless of what we do as his parents, we don’t make the final call. Cancer does.