Hi everyone! My name is Lauren, and I have a very complex story. I was diagnosed with chordoma in 1995.
In 5th grade, at the age of ten, I started randomly vomiting and having headaches. Today, I know chordomas are malignant, but at the time, doctors labeled it as benign.
Doctors in both Houston and Dallas performed four surgeries on me, including the implantation of a non-programmable shunt. Because one of the surgeries was through my pallet, I talk nasally to this day. I had quite a few grand mal seizures, and I also had a spinal tap when I was a child — the hardest thing I’ve ever done.
After the surgeries, I had proton beam radiation at Boston Mass General Hospitals — at the time, there were only three hospitals in the world that offered it. I am thankful to say I am now a 29 year survivor of chordoma.
Unfortunately, my treatment back then was very radical. Because of the extreme amount of radiation, I have been through quite a journey. In 2017, I got pregnant with twins. However, all the excessive treatment caused me to have an ischemic stroke while pregnant. This was in Houston, during Hurricane Harvey. I am extremely thankful I managed to give birth at 32 weeks. Now, my twins are six and thriving.
Because of all my history, doctors continued MRIs every six months. Then in 2019, I was diagnosed with a benign meningioma. Compared to the chordoma and stroke, this was nothing. They did shave half my hair, which was extremely bothersome to me. So I confidently shaved it all off. I definitely have guts, and shaving my head was so freeing!
But I was not done yet. In 2022, I was diagnosed with a glioblastoma, the deadliest brain cancer out there. It was found on my dad’s birthday (March 11, 2022). I am now also a two year and three month survivor of glioblastoma. I did it once. I can do it again!
The most helpful thing to me is being able to talk to someone, whether it be fellow patients and/or therapy. My family has absolutely been tremendous, but therapy and meeting other patients was the most helpful! I wish I’d had a way to connect with other chordoma patients. My family was great, but I needed someone to relate to — especially at my age.
The most important thing I learned was not to give up. Yes, I was a kid, but there was nothing more in the world I wanted than to just be a kid, physically and mentally. My advice is to keep going. I started therapy at age twelve to talk about my health and about my father getting sober. I loved therapy so much, I decided to get my masters in psychology. The goal is to keep going the best you can because you have a choice to enjoy each day. I am sure glad I am here today.
I try to share my story and encourage others in as many ways as possible. We are not alone. Volunteering at Texas Children’s Hospital when I was in high school meant so much to me — all the kids wanted was to be a kid. I remember that from my history. When I was a child, I would play with other children that were dealing with brain things as well. To actually bring a mother to tears of hope by telling my story meant everything to me.