CURE Blog

This is the story of Gus Carrasquillo – written by Erin Carrasquillo, Gus’s mom.

Our journey began in the summer of 2010. I was pregnant with our second child and planning a birthday party for our soon to be 2-year-old, Gus. Gus had started vomiting a few weeks earlier. We took him in to our pediatrician, but blood work and tests came back with no signs of illness. We made an appointment with a GI specialist, and by the time the appointment arrived, Gus was vomiting 3-4 times a day and had lost 7 lbs. I had a horrible feeling in my gut that something was really wrong. Gus was whiny, fatigued, and not walking well. A CT scan of his brain revealed our worst nightmare – a golf ball sized tumor in the back of his brain. The tumor was blocking his 4th ventricle and causing hydrocephalus. Our world stopped. From that point on we were forever changed.

Within an hour, our son was undergoing his first brain surgery. It is very difficult to find words to describe the depth of emotion a mother goes through when something like this happens to her child. The only words that come to mind are helpless and heartbreak. But I quickly came to the realization that I had to be strong for Gus. My husband and I both made it our mission to remain a strong and unified front for him.

Five days after discovery of the tumor, Gus had major brain surgery to resect his tumor. Hands down, this was and will probably be the hardest day of my life. Gus was in surgery for more than eight hours. 99% of the tumor was removed. A biopsy revealed it was medulloblastoma, pediatric brain cancer. An MRI would reveal more tumors scattered throughout the surface of his brain and a coating of tumors along his spinal cord. His cerebrospinal fluid had free-floating cancer cells in it. It was spreading.

After surgery, Gus lost his ability to walk, talk, swallow, and see. He was supposed to be running and playing in the summer sun, celebrating his birthday. There were times I felt I couldn’t breathe. I wanted to scream. Over time, I began to accept our fate. My mission was to keep Gus as comfortable and happy as possible. His vision slowly began to return along with his speech. We were thrilled by the little bit of progress he made each day. After 3 more surgeries, he started his first round of chemotherapy. We were discharged exactly 2 months after our arrival.

My due date was quickly approaching and my c-section had to be perfectly timed in between Gus’s rounds of chemo. Fortunately all went as planned, and we came home with a beautiful angel named Audrey. Two days after being home, Gus got a fever and we were back in the hospital. This time though, we were toting a week old baby. My job had just gotten ten times harder.

Christmas was spent in the hospital as Gus had a line infection and had to have two more minor surgeries. The hardest yet was still to come. Gus’s final round of treatment would be high-dose chemotherapy followed by a stem cell transplant. These were surely some of the hardest months of my life. Miraculously though, he got better and before we knew it, we were going home.

Once we settled in at home, our new focus was to get Gus walking and eating again. Being at home for longer than a week at a time did wonders for him. He began physical and occupational therapies and began to really excel. We were able to take him to the beach and the zoo. For the first time in almost a year, Gus was able to do some “normal kid” stuff and I felt like I could breathe again. June 25, 2011 marked our first year of surviving cancer. Amazingly enough, Gus took his second “first steps” on June 25. He’s walking again!

There have been a lot of tears along this journey, but there have been just as many smiles. I’ve grown exponentially as a mother as well as a spiritual human being and I’ve learned a lot about myself.

I have learned that children with cancer are some of the most amazing people on the planet. They have this amazing light in them that you don’t see anywhere else. They are an inspiration.

I’ve learned to roll with it. As a cancer mom, I had to learn pretty quickly that nothing is set in stone and to quit sweating the small stuff. I’ve learned that every day is a gift. Not just every day of my life, but every day that I get with my children is a gift. Even the bad days. I’ve learned that no matter how bad it is, every day I need to get up, get dressed, and put my makeup on. I’ve learned I am stronger than I ever knew I was, and every day I fight this battle with my son I get a little stronger. This war has been tough, but we continue to soldier on with hope and love on our side.