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Our journey began almost two years ago. I was pregnant with our second child and planning a birthday party for our soon to be 2-year-old Augustus or “Gus” as we like to call him. Gus had started vomiting a few weeks earlier. It became more frequent and we took him in to our pediatrician. Blood work and tests came back with no signs of illness. We made an appointment with a GI specialist and by the time that appointment arrived, he 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. He was whiny, fatigued, and not walking well. All these signs led the GI doc to order a CT scan of his brain. The scan 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 in his first brain surgery. I found a restroom and turned into a sobbing mess on the floor. It is very difficult to find words to describe the depth of emotion that a mother goes through when something like this happens to her child. The only words that come to mind are helpless and heartbreak. After my first of many emotional breakdowns (most of which took place in a hospital restroom), I splashed my face with water, looked at myself in the mirror, and quickly came to the realization that I had to be strong for Gus. He needed his mommy right now more than ever and I was going to be there for him. My husband and I both made it our mission to remain a strong and unified front for our son. It was okay to meltdown, but we didn’t do it in front of Gus. This made things a whole lot easier for a 2-year-old to understand, if mommy and daddy are smiling and want to play, then it must not be so bad. It wasn’t easy. I had to hold back a lot of tears.
Five days after discovery of the tumor, Gus had major brain surgery and tumor resection. Hands down this was and will probably be the hardest day of my life. Gus was in surgery for over eight hours and they removed 99% of the tumor. A biopsy revealed that 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 his surgery, he lost his ability to walk, talk, swallow, and see. It was so hard to see my son like this, all kinds of tubes connected to his little body. He was supposed to be running and playing in the summer sun, celebrating his birthday. There were times that I felt I couldn’t breathe, I wanted to scream. I was afraid to leave the hospital for fear something might happen while I was gone, he might need me. I didn’t want to be away from him, but for everyone’s sanity, my husband made me leave and go on short trips to the store. In those first few weeks, every time I would leave, it was amazing to me that the world continued and everyone went about their business like nothing had happened. Things got a little better every day and 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 had been living in the hospital for over 40 days at that point. Eventually, talk of going home began to surface and we were discharged exactly 2 months after our arrival.
No one really prepared us for what it was going to be like when we got home. There was SO much to do. It was overwhelming. Administering meds, clinic visits, running feeds, flushing lines, cleaning up vomiting messes, cleaning up leaky diaper messes, bathing Gus, laundry, dishes, keeping Gus comfortable, and I’m supposed to be taking care of myself too! It was exhausting!
My due date was quickly approaching and we had to set a date for my C-section. It had to be perfectly timed in between Gus’s rounds of chemo. I would be in the hospital for a few days recovering from surgery which meant Gus needed to be at home with my husband. Fortunately all went as planned and we came home with a beautiful angel named Audrey. Two days after being home, Gus got a fever (as we had assumed he would) and we were back in the hospital with him. This time though, we were toting a new little one with us, only a week old. My job had just gotten ten times harder. I had to spend A LOT of time planning and packing. We were back and forth between the hospital and home for the next three months, we spent more days in the hospital than at home.
Christmas was spent in the hospital with Gus, he had a line infection and had to have 2 more minor surgeries. At the beginning of the year, Gus had completed 5 rounds of sickeningly intense chemotherapy and was pretty weak. The hardest yet was still to come. Gus’s final round of treatment would be high-dose chemotherapy followed by a stem cell transplant. We were at Egleston for a month in the BMT unit. This was surely one of the hardest months of my life. I will spare you all of the horrible details. He got SO sick and it broke my heart in a million pieces to see him like that. Miraculously though, he got better and before we knew it, it was Valentine’s Day and 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 marked our first year of surviving cancer. Amazingly enough Gus took his second “first steps” on June 25. He’s walking again!
His latest MRI still shows small tumors scattered throughout the brain and spinal cord, but there has been significant shrinkage. Each new scan continues to show shrinkage. He started a new chemo regimen last month and is doing well with it so far. We are by no means out of the woods, but we have come so far I can’t help but be amazed.
There have been a lot of tears along this journey, but there have been just as many smiles and giggles (probably more!). I’ve grown exponentially as a mother as well as a spiritual human being and I’ve learned a lot about myself. Throughout our adventures, I have leaned some really basic, but important things.
1. Children with cancer are some of the most amazing people on the planet. I’m not just talking about my son either. I feel forever blessed to have met so many of these beautiful creatures. They have this amazing light in them that you don’t see anywhere else. There is no better feeling in the world than getting a smile out of them and believe it or not it’s usually not that hard to do. They are an inspiration.
2. 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. You just have to go with the flow. Don’t fight the current. Save your energy because you are going to need it for those really important life battles.
3. 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 have learned to leave the dishes in the sink and snuggle up on the couch with my babies and watch a movie. The dishes aren’t going anywhere, trust me.
4. No matter how bad it is, everyday you need to get up, get dressed, and put your makeup on. My mother gave me this advice when Gus first became ill and to this day it’s one of the best pieces of advice I have ever been given. It gave some order to the chaos, kept me from sliding into a depression, and kept me focused on what was most important, my children.
5. I am stronger than I ever knew I was and every day that 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. Every night, I put Gus to bed, kiss him on the forehead, and give thanks to God for allowing me to be his mother. His joy for life is incredible and his smile will melt your heart. He is an amazing little boy that has changed my life more than he will ever know.