Michael's Cancer Journey

By his mother, Alicia Quintero

Michael was born in March of 2007 and diagnosed with brain cancer in August of 2008. He was just 18 months old. We noticed some random eye movements at 15 months that sent us to the eye doctor. At his 18-month checkup, his head size circumference was off the charts—it had grown considerably. This prompted a CT scan that found the 9 cm tumor inside his little head. He had emergency surgery Labor Day weekend and then started chemotherapy. Two weeks after diagnosis, he suffered a stroke that permanently affected the left side of his body. A shunt was also placed inside his brain to manage the hydrocephalus that had caused his head to grow. We found out much later that Michael was pretty significantly visually impaired from the tumor damaging the optic pathways.

We lived in Logan, Utah at the time and traveled two hours to the nearest children's hospital for Michael's monthly chemotherapy treatments. My husband was in school at Utah State University, and in 2009, we welcomed our second son to the family, Alex. After graduation and planning for Mark's master's degree, we looked for a city that had a children's hospital, and God led us to Cincinnati.

We moved to Cincinnati in 2010 and found an incredible hospital, an amazing doctor, and a fabulous support system. Even though we had left our extended family in Utah, we love Ohio and the people we met here. After moving to Ohio, Michael had two additional surgeries to remove more of the tumor, more chemotherapy, and several surgeries to fix that pesky shunt that was always causing him problems. Mark graduated from Miami University in 2012, and we added two more children to our family. We bought a house, and everything seemed to go OK for Michael. He still had cancer, but we were managing it, and he was doing well. He loved school, and he loved going to therapy.

In 2018, Michael's current chemotherapy regimen was not working, and it was decided we would do proton radiation. Michael did six weeks of radiation, causing all of his hair to fall out on that left side. June 2018 was when we went to Lighthouse for the first time. That time in Destin was one of the happiest times for our family. Michael was well, he wasn't taking any chemotherapy, and we had a fabulous time.

In October and November 2018, his shunt continued to give us problems. He was admitted to the hospital November 17, 2018, with a "wait and see" approach. Two weeks turned into two months, which resulted in Michael being in the hospital until April 2019. The tumor was causing protein and debris in his cerebral spinal fluid, which was clogging up the shunt. His doctor determined there was really nothing more we could do. And we had exhausted all his chemotherapy options. By this time, we had tried all of them, and there is not an infinite list of choices.

Michael was able to come home for one week, and then we entered the hospital again to do end-of-life care. He passed away May 20, 2019. Twelve years, two months, and two days old.

The hardest part of the journey is the isolation. "Regular" people don't get you when you're a cancer family. You find your people, and the tribe that does get you, through organizations like DragonFly and Lighthouse, but unfortunately, they are all dealing with the same things you are dealing with. So finding time to connect with them is often impossible. People don't understand that you can have cancer for years. Michael did not get remission; he didn't get to say he beat cancer. Sometimes you don't. You get used to hearing about people that had cancer and are now in remission. We love to talk about the comebacks and the victories. But no one talks about the endless slog through the mud that this journey is sometimes. Everyone rallied around us when we were first diagnosed and then the meals stopped, the phone calls stopped, and we were left to go it on our own.

We were able to find hope in the things we were able to do as a family and forget about cancer for a while. We were blessed to attend baseball games and hockey games. We got tickets to Kings Island, and our awesome trip to Destin, Florida with Lighthouse. All from various organizations that want to love and support you through this cancer journey.

Michael's cancer diagnosis, treatment, and loss are the absolute hardest things I have even been through in my life. But also, there is so much good and so much joy. People rise to the occasion to help with gas, bring you food, or mow your lawn. People that want to send you and your family somewhere fun when you're all feeling well, and people that will just sit with you when you aren't. I would encourage others on a similar path to look for the good and hold onto the joy.

I could write books about Michael.

He was the most beautiful old soul. He loved people. When you talked to him, he would take your hand and pull you in close, so he had your whole attention when he was talking. He loved to give hugs and kisses. He liked his music loud and often had several small music toys playing at the same time. He had a great ear for music. He had perfect pitch and could identify notes when you played them on the piano. He could memorize just about any song or story he listened to. He endured so many pokes and so many yucky medicines, but he was always sweet and kind to everyone. He was a great brother and loved his siblings. He had a special relationship with his dad, and they used to play songs on the piano together.

He liked to play practical jokes. When we were in Destin, he was sitting by me scooping sand into a bucket, and then he ever so carefully dumped the bucket on my leg. I cried out in dismay, and he laughed. When he was four and relearning how to talk after his stroke, we were riding in the car. His little brother Alex was crying. I asked my husband, "Why is Alex crying?" I hear this little voice in the back seat, and Michael speaks up, "Baby say, ‘binky,’ I say, ‘no binky.’" He was teasing Alex!

Michael was a beautiful blessing to all who knew him, and I am so grateful God chose me to be his mom.

The Quintero Family will be joining us on our annual Sunrise Retreat this month, a bereavement experience offering rest, restoration, hope, and joy for families who have lost a child to cancer. In looking ahead to their retreat, Michael’s mother, Alicia, shares their hopes for this time: “I hope to make lots of happy memories; our retreat in 2018 was one of the best times we have had as a family. My son Anthony said Florida was his favorite place ever, so I hope North Carolina is just as awesome.”

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During the month of September, we will be sharing stories written by some of the families who will be attending our Sunrise Retreat this month. We hope you will join us in praying for these families who have endured unimaginable loss, that God will use the week away with their family and Lighthouse volunteers to bring healing and hope.

Our fundraising goal for Childhood Cancer Awareness Month is $30,000, because that’s what it takes to put on a Sunrise Retreat. From meals and gifts to Parent’s Night Out, sibling activities and nights of remembrance, every single dollar we receive in September is going to be invested into providing a restorative experience for families who have lost their child to cancer. When it comes to our growing Sunrise Retreat program, more funding means more families served. Whether you can give $1, $100 or $1,000, please join us in honoring the memories of the children we’ve lost by providing support for the families who will never forget them. Visit this page to learn more or donate.