In September of 2018, at 6 years old, my incredibly smart, creative, silly, kind and loving little boy began getting sick and vomiting every morning. I later discovered he was complaining of headaches at school—but they came and went quickly.
After several doctors appointments and giving up on waiting for the MRI which was weeks out while he continued to worsen, I got up one morning and took him to Cook Children’s Hospital in Fort Worth. There they immediately did a CT scan and found a brain tumor in the posterior fossa region in his brain. It’s a common place for childhood brain tumors but we later found out that his cancer was not so common. He was diagnosed on October 9th with Medulloblastoma, metastatic and very high risk, after the original tumor was removed.
We held onto hope as they gave him a 50% chance of survival based on the type of cancer. He still had cancer cells covering his brain and going down his spine, as well as floating in his spinal fluid. Luke turned 7 in the hospital recovering. After three weeks in the hospital healing from surgery and beginning occupational, speech and physical therapy as well as a port placement on Halloween, we were released to go home.
Luke was unable to use the left side of his body as he had been. He could walk but had to have assistance as he would fall over easily and he struggled to control his once dominant hand. On the way home we went to his first proton radiation appt, the first part of his treatment which was supposed to be able to cure it all by itself (even though we would continue with a St. Jude’s trial that included chemo). After his fitting for his mask we went home. That night he began having major pain in his neck, to which we all attributed to a second tumor we knew was growing in his spinal cord that couldn’t be removed surgically. After a few days and things getting worse and meds not helping, we were brought back to Cooks for a stat MRI which made our greatest fears a reality. The original tumor grew back and caused swelling in two different locations in his brain, making a shunt deadly. So our only hope was intubation and taking him to the proton center via ambulance with a team from the hospital that stayed with him.
He went for his first treatment and everything seemed to go okay. That was at around 7am. By 8pm that night, Luke began showing signs that his brain was no longer in control of his body and we had to accept the reality that he wasn’t going to survive. The radiation had done nothing to melt his tumor. We prayed. Thousands prayed. But, around 2am on Nov 9th, his pupils blew. He was still on the vent so we could choose when we let him go although his body was slowly doing it without our permission as his blood pressure began dropping without his brain controlling things.
We offered to donate his organs but the doctor said he couldn’t let us given the extreme aggression of the tumor cells that they could not chance letting out. So we waited until we got some sleep and at 12:30 that day we removed the vent and watched for close to 45 minutes as his strong heart tried and tried but couldn’t keep going. I sang him to sleep one last time with our family surrounding him with love. The doctor assured me that since St. Jude’s had Luke’s tumor and other samples that he would inevitably save the lives of other children. He likely had a gene they didn’t even know how to test for yet.
The doctor said that in his 20 plus years of experience with this type of cancer, they had NEVER seen it progress like it did with my baby. My life hasn’t been the same since.
Our family decided to start a 501c3 in Luke’s memory, called Luke’s Legacy of Light. Our goals are to help improve the quality of life for children and families affected by childhood cancer as well as funding research to fight it. We want to be the light for others as Luke was a light for us. You can find out more about our foundation by looking at www.lukeslegacyoflight.com
