October 24, 1998 – March 28, 2006
Diagnosed: June 2005
Aaron Anthony Clavier was born October 24, 1998. He is the third child and only son to Donald and Michelle. He weighed in at a whopping 9 lbs 4 oz. He was a happy baby and was their healthiest. As a child between the ages of 2-6 he was a comedian. He made everyone laugh. Life was Aaron’s playground. He talked to everyone, no one was a stranger. When he would first meet you, he wanted to know your first and last name. If you told Aaron something or promised him something, he would not let you forget. He would remind you and hold you to your word. He loved Thomas the Tank, playing Upward Basketball, Wee-Ball, and Tee-Ball. He took to water like a fish. He was a great swimmer.
He loved to play with his two older sisters. The girls would play dress up, dolls, tea, and all night camping under the blankets in the living room. Aaron and his best friend loved to play video games, racing remote control cars and riding their toy four wheelers and more.
Aaron finished Kindergarten in May 2005, with honors and was in Spanish Immersion. During the summer he was looking forward to playing Tee-Ball with the Braves team and his friends. After summer, he was looking forward to starting first grade.
All our lives came to a Stop on Father’s Day June 2005. The two weeks prior to father’s day, we noticed small inconsistent changes in Aaron. First was his right eye turning inward toward the nose. His voice sounded more like baby talk. When running to the bases in Tee- Ball he would trip over his own feet and was not running as fast as he did in the past. I made an eye doctor appointment for him later in the month. The Sat before Father’s day, Aaron went to his friend’s house to swim and sleep the night. The mother contacted me with concerns she noticed. Aaron could not hold his head up while in the pool and he seemed sleepy, lethargic. She thought I had given him some medication that would have made him sleepy. I had not given Aaron anything. We immediately went and got Aaron and brought him to the hospital. After hours of testing, we found out he had fluid on the brain, but we did not know what was causing it. The hospital made arrangements for Aaron to be admitted and be seen by a Pediatric Neuro-Surgeon in New Orleans, three hours away from our home. Sunday, early Am, our family member drove Aaron, Donald and myself to New Orleans. The plan was for the Doctor to place a Shunt in Aaron’s head to drain the fluid off the brain. We brought the test results and CT Scan films with us to give to the doctor. We waited from seven am to eleven am, for the Doctor to arrive. He had the nurse bring Donald and I into a room to meet with the doctor. We left Aaron with our family members. The Doctor told us, we had bigger problems than fluid on the brain. He told us that Aaron had a tumor in the brain stem, called Pons Glioma. He informed us that they could not Biopsy or do any surgery in that area. He told us that it affects mostly Elementary kids ages, and they only live a year at the most. I cannot put into words what it was like to hear those words about your child. The room went black and quiet. I don’t remember who else was in the room with us. I remember telling Donald, I did not want to lose, Aaron. We both cried and Donald agreed with me. This was the Worst Father’s Day for Donald. All I wanted to do was go hold Aaron in my arms. He advised us to take Aaron home with Hospice and spend as much time as we could with him. With no treatment he gave him two months. He planned on treating Aaron with medication to get the fluid off the brain and help the swelling of the tumor. Aaron never needed to get the shunt, the medication worked. By the third day, he was talking, walking and more like the Aaron we all knew. We met with the staff and doctors and listened to our options to treat Aaron. On the third day, I talked to Aaron and asked him if he remembered doing the Math-A-thon for St. Judes Cancer Kids? He said, “Yes.” I told him he was now one of those kids. As I cried telling him the devastating news, he wiped my tears from my face and comforted me and told me, “Everything would be ok. God had a plan”.
We made the decision to go to Houston to MD Anderson for a second opinion. One week later after hearing the news for the first time, we received the same news. They were a little more encouraging, if we decided to do the radiation, oral Chemo, and Experimental medications. Everyone who knew Aaron, would tell you, he was very smart. He talked and was wise beyond his years. We made the decision to tell Aaron his options and let him make the decision if he wanted to go through treatments. We told him we would be with him every step of the way and we would be praying for a healing. If Aaron would have said, “No”, we would have respected his decision and took him home with Hospice. Aaron was willing and excited to start treatments.
On July 5,2005 Aaron started Radiation and Experimental drugs. My family spent the summer driving back and forth from Louisiana and Texas. Aaron’s sisters were with him through the process. As parents our goal was to keep the family together and spend as much time as we could together. While in Houston, we went and did family things and tried to make the summer as fun as possible. Aaron’s tumor was responding and shrinking. He followed up with Oral Chemotherapy. He was doing good. Full of energy, riding his bike again. He was smiling, laughing and full of life again. Aaron finished his radiation the day before school started in Aug. He started school on time with his classmates. The school staff was great by working with Aaron and his needs. Most days, he would get tired by noon and would call me to come home. Life was as normal as it could be between August and Jan 2006, with lab tests, medication, and Dr. visits. Aaron and our family were blessed with two amazing trips, that today we Cherish the Memories. MD Anderson blessed six families from the Pediatric Clinic with a trip to Clark, Colorado to HomeRanch for a week. Aaron received his Make A Wish trip to see Peter Pan at Walt Disneyland in California in Dec 2005.
By Jan 25, Aaron asked us to bring him to see his Doctor in Houston on Monday. I asked him if he felt bad. He said, “Yes”. We were not scheduled to see the Doctor til April for his MRI. Monday morning, we put the girls on the bus for school and headed to Houston, two hours away. On the way, I contacted the Doctor and Aaron went straight in to have the MRI. We stayed the night to get the results the next day. Jan 28, 2006, the news came that we did not want to hear!! The tumor was growing back with a Vengeance. Doctor told us there was nothing else they could do. They gave Aaron two months. In a last attempt to save Aaron’s life, we did turn to Alternative Treatments. Our family, friends, and our amazing community raised the money we needed to do the treatments. Unfortunately, it was too late.
On March 28, 2006, Aaron was healed in his own way. He lost the battle to Cancer but won the war. He went to be in Heaven with Jesus. He is missed everyday and loved always by his family and many. Our hope is to be with him again.
As parents who have been touched and affected by childhood Cancer, I feel there needs to be more money dedicated to research for Childhood Cancer and Cures. We need to bring more awareness to Pons Glioma. I want to express my gratitude to Michael Mosier and his parents Mark and Jenny and his little sister raising money for this cause and setting up this foundation to bring attention to a growing childhood Cancer. I pray daily for the children and their families that are affected by DIPG and ALL Childhood Cancers. Praying that one day we will have a cure and NO KIDS will be diagnosed with Cancer.
In Loving Memory of Aaron Anthony Clavier
Love Daddy, Mama, Amanda, and Amie.