My son, Beau's story began in 1996 when he was 13 years old. He was a happy, healthy, athletic kid that brought his family joy and adventure on a daily basis. He is the 4th of 6 children in his family and loved dearly by them all.
When Beau was 13, he loved playing football, but he would complain of frequent headaches. I thought, “of course, he has headaches-from all that hitting and tackling going on at practice.” Then, one weekend, his dad and I went out of town for a few days leaving his older sister, a senior in high school, in charge. The next morning I called at 7:30 to make sure everyone was up getting out the door for school. My daughter was distraught because she had been up all night with Beau. He was experiencing excruciating headaches and vomiting repeatedly. We finished our business and flew home that evening only to find Beau acting normal and fine. The crisis seemed to be over. However, something nagged at me that this was more than the stomach flu, but we proceeded on.
Beau left for a scout campout the next evening and everything went fine at the campout. But when he got home, he had another night of headaches and vomiting. We took him to the pediatrician the next day. At first, Beau was diagnosed with migraines and was going to send him home with medication for migraines, but then the doctor said, "Just to rule anything scary out, let’s just send him to have a CT scan." I'm grateful for that decision because the tumor was found through that scan.
We were devastated, but also filled with hope that it was something that could be surgically removed with no problem afterwards. Surgery was performed but because of the location (by the optical nerve, hypothalamus, pituitary gland and a major artery), it could not be successfully removed completely. It was diagnosed as a Stage I, slow growing, pilocytic astrocytoma. The surgery did damage Beau’s optical nerve so that he was left with no left-side peripheral vision, which caused him to not ever be able to drive. This was pretty hard on him as he watched all his friends get their permits and drivers licenses over the next few years. However, Beau made the best of it and rarely complained.
After the surgery, Beau had to go through 15 months of chemotherapy. We were thrilled when after that time; it was shown to be successful in shrinking the tumor and stopping its growth. We were told before the treatments started that there was no cure. They were not going to be able to ever get rid of the tumor completely but because it was a Stage I, slow growing, non-malignant tumor it would just "raise its ugly head" from time to time and need treatment, but he could live to an old age.
For the next 10 years, Beau had regular MRI's and there was no new growth. During those 10 years, Beau received his Eagle Scout Award, was the Sr. Class President and Homecoming Prince. Then, he graduated from high school, held several great jobs, went on a two-year mission for our church, went to college and pursued his artistic side and love of technology. During college, he studied to be a graphics designer. He was into physical fitness, running and biking. He LOVED movies!
Then, in the spring of 2007, he started experiencing symptoms again. We flew him home to have an MRI and he was immediately hospitalized. A shunt was surgically placed to help drain blocked spinal fluid and he immediately started another year of chemotherapy. That proved unsuccessful in stopping the tumor’s growth so the next step was radiation.
We had steered clear of radiation therapy when he was 13 because of risks to a still developing brain and risks in accuracy at the time. This time, we were reassured that he was older and better able to handle it. Also we were reassured that technology had come so far- that they were able to aim the radiation more precisely to the area needed and there was only a 5% chance of other damage occurring. We thought those were pretty good odds and made the decision to go ahead with the treatment.
Three months later, we were thrilled when they told us it looked like it had been successful and that Beau could return to college. He wouldn't need another scan for 6 months. Little did we know what we were in store for later.
In 6 months, Beau came home from his summer job between semesters to have his regular scan. They found that his tumor had tripled in size because of swelling caused from the radiation. As they were determining what treatments to use, his eyesight started changing. They were sure it was from the compression on the optical nerve from the swelling. He was then put on steroids to help relieve the swelling. The steroids did relieve the swelling, but his eyesight continued to deteriorate and eventually over a two month period of time he went completely blind.
They realized then that the blindness was caused from permanent damage from the radiation treatments.
We were devastated, but ready to cope with his blindness to help him adjust and learn to be independent while being blind. That is putting what we were going through mildly, but true. Eventually, Beau contracted H1N1 and was hospitalized with pneumonia. After returning home, Beau was plagued with delirium, which we assumed was going to be temporary. Unfortunately, over the course of the next two months, Beau was hospitalized 4 times and once it was for 3 weeks.
Further radiation damage was found to have affected his hypothalamus and pituitary gland. He now has deficiencies in all of his hormones which are produced. His delirium persisted and increased. It has now been 3 months since his last hospital stay and it has not improved, so it, too, is looking like a cause from the radiation damage. He is also experiencing left-side neglect which is making it difficult for him to balance and he forgets to use his left hand.
You never think you are going to be one of the 5% when given statistics. We do not fault the doctor, it doesn't appear that any mistakes were made, and we don't think radiation treatments shouldn't be considered by others. It really is rare to have what happen to Beau happen, but we are just trying to cope with what is looking like our "new normal" and searching desperately for anyone who may have gone through something similar or any doctor that has dealt with this before.
My bright, talented, happy, active son is not only blind, but struggles with balance and is confused most of the time. He now needs 24-hour care to help with the simplest of tasks. His quality of life is very low. The sweetest part of him is still intact. He is so grateful for anything that is done for him and is constantly expressing love for those around him. He tries so hard to be strong and brave, but his life has changed completely. My heart breaks everyday as I watch him go through this.