Avaric, my 7-year-old son, wrote me a note today. The letters were smushed together, tight.
“Dear Mom. I hate the medicine, but I still love you.”
Today -- like every day -- Avaric had to take a multitude of meds. One to keep him from vomiting, one to keep the constipation at bay, more to keep him from vomiting. Our medicine cabinet looks like a pharmacy. I fought him for about 15 minutes to take his meds. It took my mother and me to finally get him to swallow everything. By the end, he was hitting at me, and I was trying not to sob.
Today was a typical day for us. Chemotherapy in the morning followed by radiation treatments in the afternoon. Then the medications. School is almost an afterthought now. Such is the world of pediatric cancer.
In late July, Avaric was diagnosed with brain cancer.
Seeing the words “brain cancer” still shocks me, wears me thin. Those are the words I never in my lifetime thought I would ever write. Here or anywhere. But there they are. Black and white.
Some of you might remember Avaric from an earlier post that I wrote about his diagnosis of Asperger’s Syndrome. He is brilliant and sweet and can be so rigid in his routines that he comes across like a little general. His daily routine used to include reenacting his day at school, and he always pretended that he was the teacher. I used to have hundreds of sheets of paper with notes he had written for his students. Those papers were everywhere in our house. During the summer, in a cleaning frenzy, I threw them away, certain that more notes would follow once his new school year began. Believing that I couldn’t save everything.
I miss his school notes. I miss his rigid routines. I miss life before cancer.
His diagnosis was sudden. This summer, he started complaining that his head hurt. The headaches were sporadic, and occurred mostly at night. We thought he was using a headache to avoid going to bed. Sometimes he would complain about dizziness and headaches when we were outside swimming. But, as the heat in St. Louis often hit 105 this summer, we chalked it up to the heat. The symptoms would disappear once he went into the air conditioning. Then his eyes began to hurt. We thought it was the chlorine from the pool. Nothing looked unusual, his eyes weren’t red. Until one day, when he began to rub them in annoyance and he said to me, “Mom, I’m seeing double.”
Avaric always had perfect vision.
I made an appointment with his pediatrician. Not sure what was wrong, the pediatrician sent me to see a pediatric eye specialist. That referral probably saved my son’s life. The specialist ordered an MRI. just to be safe
On July 23, I received the call that changed everything. The doctor told me the news wasn’t good. He told me to sit down. And then, he said the words that I’ll never forget: Avaric had a brain tumor. It was a little larger than a golf ball. I was instructed to call my pediatrician. I drove there instead.
I remember sitting in the room sobbing. The pediatrician referred us to a pediatric neurosurgeon at a local children’s hospital.
The neurosurgeon was prepared for our arrival. He pulled up the MRI. And I saw the tumor in my son’s brain. The sight was sickening. I can’t remember much of what the surgeon said that day. The shock was too much. The adrenaline kicks in, and your brain becomes desperate to process the unthinkable. All I could ask was: “Can you remove it?”
The tumor was located in an area of the brain called the posterior fossa. Avaric’s tumor was actually pushing on the cerebellum, which controls balance and coordination. The area also helps control eye movement, which is why Avaric was seeing double. The size of the tumor also had caused the cerebrospinal fluid to back up into Avaric’s brain, a very serious condition called hydrocephalus that can lead to seizures or a stroke. The tumor could be removed, and it had to be removed immediately. Surgery was scheduled for the next afternoon. But first, a clearer MRI was needed.
Avaric was admitted to the hospital in late afternoon on July 23. He was so excited to be there. He kept calling my mom (his nana) and telling her how cool it was that he had his own room. I sat down with him and explained what was going to happen. He was so brave when the nurses started an IV.
I went with him down to radiology for the MRI. I couldn’t stop crying. I just kept telling him that I was being crazy mom. I wanted so badly to be brave for him.
Waiting for his MRI to be completed was torture. We wouldn’t get the results until the next day. Extra images were ordered to visualize his spine. The doctors wanted to see if the tumor had spread into his spine. The thought horrified me. We didn’t know if it was benign or malignant. I kept hoping it was benign.
I slept next to Avaric that night. I wanted to be near him. I had no idea what would happen after surgery. If he would be the same child. This was brain surgery, after all.
Hours before his surgery was scheduled to begin, his surgeon sat down with me at the nurse’s station. The results from the MRI were back. We sat at one of the computers. Avaric’s doctor pulled up the MRI pictures. I saw his spine. And it was glowing.
I was told the glow was called “enhancement.” The enhancement on his spine represented cancer cells. The brain tumor was malignant. And the cancer cells had spread.
I can’t tell you if I cried. I think I did. I must have cried. I remember I began to do my nervous fast-talking. I probably sounded incoherent. The surgeon was so kind. As kind as he could be when giving the news that he had to deliver. He told me that the cancer hadn’t invaded the spine; the cells had just seeded on top of the spine. The prognosis was still good. But the treatment protocol would probably be aggressive.
I felt like the walking wounded. I went back into Avaric’s room. And there he was, alive and excited and happy.
A few hours later, he was wheeled into surgery. He was such a trooper. Brave until the very last minute, when I had to leave him. There is always the point of no return for parents. It’s usually marked with a red line.
I didn’t cry when I left him. Maybe I was cried out. My face was still raw from the night before. My husband and I -- and several family members -- took our place in the surgery waiting room. Eventually, we were given our own cubby with a phone. Every hour, a nurse from the surgical team would call us with updates on Avaric’s surgery. Every time that phone rang, my heart seemed to skip a beat. Yet, every call was the same. Everything was going well. Vitals were stable.
The surgery lasted about 8 hours. The tumor was sent to pathology to find out what type of cancer we were up against. Results wouldn’t be back for more than a week.
Avaric spent nine days in the hospital. During that time, he had to learn to stand up again, to walk with assistance. Therapists worked with him to evaluate his motor skills and his speech and processing. His cognitive abilities were unaffected. But the tumor had left him with muscle weakness.
We went home with a child who had been put through hell. Medicines were pushed down his throat. He was tired all the time, which is typical for brain surgery patients. He was angry. I didn’t blame him. And we prepared him for what was to come. I explained that he had cells in his body that needed strong medicine. We talked about what the strong medicine would do to his body.
Avaric’s tumor was diagnosed as medulloblastoma -- the most common malignant brain tumor in children. It’s aggressive, but it’s also the tumor about which doctors have the most information. Treatment is chemo and radiation followed by more chemo. In a few months, he will have another MRI to assess the cancer.
Avaric started to lose his hair last week. On Friday -- with his dad in the chair beside him -- Avaric said goodbye to what was left. I tried not to let him see me cry.
I kept those precious golden locks. Every detail in the day is so vital now. Everything is worth saving.
It’s amazing the things you take for granted in life. I would give anything to see him play school again. I would give anything to see him run on a playground again.
I’m scared. No one can tell me it’s all going to be OK. The doctors can’t say what will happen next. They can tell you what the next treatment will be. They can tell you the side effects of the chemo and the radiation. But nothing really prepares you, nothing really can prepare you, when the side effects start to happen to your son. The way your heart sinks when you watch him vomit after chemo for the first time. Or the day when he starts pulling his hair out in clumps.
But no matter what the day brings, the routine must go on. Every morning, I wake up to and prepare for another day of Avaric’s treatments. Some mornings, I cry in the shower. But I move forward, because I can’t stop the fight. I won’t stop the fight.
And then I pull my little general out of bed and I lead him into battle.