Friday, September 26, 2008
Owen's diagnosis story...
Owen was diagnosed with medulloblastoma, a rare cancer of the brain and spine, when he just three years old. He had been vomiting for three days, and complaining of neck pain. Fearing meningitis, but hoping for something benign like a stomach virus, his father and I took him to the ER at Women and Children's Hospital on Saturday, April 14, 2007. We spent about 12 hours there, Owen going through a battery of tests, including bloodwork, a spinal tap, and finally a CT scan. Finding nothing on the initial viewing of the scan, we were sent home. We stopped at Walmart to buy him popsicles. When we got home, there were 4 messages on our answering machine, and the phone was ringing...it was the doctor from the hospital, telling us to come back in, and to bring in a change of clothes.
When we got the the hospital, there were two doctors waiting for us, a neurosurgeon and a neurologist. They asked us if we had noticed Owen appearing weaker, uncoordinated, slurring his words. They checked the way he was walking, his grip on both hands, his pupils. They told us that the reason that they were asking us those questions was because Owen had a tumor in his brain. It was in the back of his head, near the brain stem. We were told that the tumor was about the size of a grape. They actually considered taking him into surgery that night. Instead, Owen was operated on on Thursday, April 19. On Monday, they did a MRI of Owen's head and spine. They discovered that the tumor in his head was larger than they had initially thought-it was about the size of a walnut. They also discovered that Owen had tumors in his spine, placing him in a much higher risk category. They would not be able to operate to remove the tumors in his spine because it was inside of his spinal column, and to do so would sever nerves.
The night before Owen's surgery was the absolute worst night of my life. Obviously, brain surgery is extremely risky, very intense, they were working very close to his brain stem. I also knew that, regardless of the success of the surgery, the child who was walking in to that surgery would not be the child who walked out. We were warned that it was possible that he may talk after surgery, then lose the ability a few days later. We were told that because they were working so close to the brain stem, that it was possible that Owen may never wake up at all. We were told that they may not be able to remove all of the tumor if it had infiltrated the brain stem.
Luckily, during surgery, they were able to completely remove the tumor in his brain. However, in doing so, they had to cut through his cerebellum, leaving his right side very weak, so he was unable to walk, crawl, sit up, or even have control over his right arm and hand. For about the first month after surgery, Owen would cry, ask for something, and when you brought it to him, he would cry and tell you he did not want it.
He endured 37 radiation treatments to his head and spine (which, I believe, is a record at Roswell for his age), leaving his tender skin burned and raw. He was sedated, intubated and his face was put in a cage formed to his head and face so that he could not move during radiation each and every time. He began chemotherapy after his surgery in April. The horror stories you hear about adults going through chemo pale in comparison to how you feel watching your young child react to it. When you hold his tiny little body as they are vomiting nothing but green bile because there is nothing left in his tummy reacting to the very poison that is supposed to help cure him. When his white blood cell is so low that even the tiniest infection could become dangerous. He spent over 140 days in the hospital since his diagnosis. Owen had several infections, one in which his fever was over 104 degrees, and his body was shaking, his face twitching because his electrolytes were so off. Owen stopped eating for months, and was put on a bag of fluid (total parental nutrition) which was a highly caloric "food" that went into his bloodstream through the broviac central line in his chest (which is sort of like a permanent IV line). Every single night he was on that, he vomited. This was in addition to the vomiting he did with the chemo ...This was all before his 4th birthday.
Owen eventually regained his strength in his right side. He was able to crawl, then stand, and eventually walk without support. And, eventually, he did laugh again. He became the Owen we all know and love again, even stronger. His sense of humor returned. Owen's personality came back. Unfortunately, even though he had a completely clear MRI in January, so did his cancer. We had been told that if it returned, there was no chance for a cure, especially at his age, and with the extensiveness of his disease. In April, after we received the news, we thought we had about 6 weeks left with him, tops. Luckily, here we are, almost 7 months later, and Owen is still with us. Currently, Owen is in Hospice Care and at the end stage of his illness. He is awake for a few seconds at a time. He has not eaten anything in almost a month, does not speak, most likley cannot see. I do not know how many days or hours I have left with him. Our lives have changed so much because of this diagnosis and everything that comes with that. Soon, I will not have my youngest son. So many wonderful, amazing children have already been lost to cancer. I know that there is research being done to help to find a better way to treat cancer, and to hopefully have a higher cure rate so that no other families have to know what it feels like to have to wake up each day knowing that you will not be able to watch your child grow up. I am thankful that many children and families endure this and survive, but I will spend the rest of my life wishing with all of my heart that Owen was a survivor of cancer, not on the list of angels it has claimed...
Enjoying the fact that he is still here, fearing the life I will have when he is not.