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Mom’s Story
Our son, Jarred, was diagnosed with an inoperable brain tumor at age 11. Every parent’s worst nightmare had invaded our family. Jarred had suffered with chronic headaches off and on for around six months prior to the diagnosis. They were never bad headaches, just steady ones. Two Tylenol and he seemed fine for a few days until the next headache. During that year Jarred was more tired than usual and just not himself as we knew him. No diagnosis is stronger than a “Parent’s Gut Feeling.” If you feel something is seriously wrong with your child, be proactive and pursue it. Doctors are not GOD! It doesn’t mean it is their fault if your child suddenly becomes seriously ill. We love to put the blame on someone, so that might be the simplest way to outlet the feelings at the time. There are hundreds of reasons for 11 year olds to get headaches. Unfortunately, one rare time it may be a tumor headache, which is quite hard to distinguish from the rest of them.
And now…Jarred’s story. It wasn’t the first time that fall of sixth grade we had been called by the school nurse to come and get Jarred because he was sick. I decided, however, it would be the last. He was vomiting and having headaches. I knew something just wasn’t right with him and we needed to get to the bottom of this. He had been diagnosed with allergies, Strep Throat, the flu, etc…but never really got better. My husband and I had talked about the possibility that he needed glasses. We had discussed this with the pediatrician earlier and an appointment with the specialist had been scheduled. I was scared to death that day, because when I picked him up he looked so sick. His face was so pale. He also had a new symptom, double vision. His symptoms had definitely intensified in the last week.
Immediately I called the pediatrician and told him I was bringing Jarred in. Several pediatricians looked into his eyes. They had suspicious looks towards each other and I knew something was up. The pediatrician immediately sent us to an eye specialist from there. The specialist (Ophthalmologist) noticed something right away. Jarred’s optic nerve was very swollen. She told me that this was a definite sign of a brain tumor. It was pretty scary, because my husband was gone on a hunting trip to Minnesota. We had always been together during hard times and critical decision-making. I dreaded making the call to him that he needed to come home. I felt so awful for him. The other dreaded calls were then made to grandparents and other family members. Jarred shocked us all by taking the news quite calmly. He hadn’t felt good for a while and I’m not sure either of us was totally shocked by the news. Immediately following the eye appointment, we headed straight to the hospital for an MRI. It confirmed the diagnosis by the specialist. Jarred had a brain tumor AND he had a condition called Hydrocephalus (another term for water on the brain). This meant that fluid was building up on the brain and not draining properly. Jarred needed surgery to put a shunt in for the hydrocephalus, this would enable the fluid build-up in his brain to drain properly. However, a scary thought, 50% of shunts need several surgeries and revisions. They can block up quite often. The neurosurgeon said it was a pretty basic surgery, but there are always risks. Jarred was scheduled a week from the MRI to have the surgery to put a shunt in and do a biopsy on the tumor to see what grade it was and if it was malignant or benign.
In the meantime, he was put on steroids to reduce the swelling in his brain. Unfortunately, steroids have lousy side effects. Mainly they can make you moody and gain weight, and you can break out with acne. I felt so awful for Jarred. This handsome, athletic 11-year-old kid had gotten all of these effects. Not only did he have hydrocephalus and a brain tumor, but also his self-esteem was low, something we’d never had to deal with before.
Jarred's Story | Jarred Birth - 12 | Jarred's Family | Jarred's Friends | Jarred Williams Foundation
For more information, email contact@jarredwilliams.com
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