October 27th was “Crazy Sock Day” at the elementary school and TJ was really excited about going. He loved going to school, but this day would be even better because he would be wearing long white socks he decorated with colored markers for “Crazy Sock Day.” Little did we know, his crazy socks would be the biggest conversation piece of the day and would come to represent so much more for him, our family, friends and community! TJ was in 4th grade and 9 years old. His brother, Andrew, was in Kindergarten and 5 years old. TJ was excited because it was “Crazy Sock Day” at school and he designed his own socks the night before with colored markers. He participated in a lot of dress up days at school, Nerd Day, Crazy Hair Day, School Spirit day or anything that would allow him to do something fun and I applauded his enthusiasm. This day brought me a different kind of excitement. We finally had an appointment with a pediatric neurologist, Dr Debra Balke, and I had high hopes that she would tell me what was happening with TJ.
The Illness: For months and months, TJ suffered with spells of vomiting, occasionally feeling dizzy when laying flat and loss of weight. There were many visits to the emergency room, pediatrician, pediatric gastroenterologist and counseling. TJ getting up at 3am to vomit, having to leave the classroom during the day to vomit, running to the bathroom at any given time to vomit. He stopped eating certain foods that he thought would either trigger him to vomit or were inedible to him because it was something he had vomited up in the past and he could no longer stand to eat it. No more eggs or corn and the list increased over the months. Endless hours of worry and frustration. By the time we headed to the neurologist on 10/27/2005, TJ was only eating bagels and a few other things. Sometimes, he would go a few days of intermittent vomiting and other times, he could go a week without an episode. His voice turned raspy and hoarse and I assumed it was raw from all the vomiting. I kept a journal of what he ate, what he did and when he vomited in order to find a pattern to find the cause, but no pattern formed. It seemed he would vomit during time of stress, but it wasn’t consistent. TJ grew weaker and weaker. He used to ride a skateboard, but quit when he became ill. During the cycles when he was not vomiting, TJ would stay active. He played baseball, even though it was difficult for him to run. He had little endurance. He was a Boy Scout and enjoyed attending with his friends, Cameron and Danny. His little 5 year old brother, Andrew, also loved to go with him.
The Pediatrician: Dr Hillel Janai- would tell TJ it is “all in your head” and that he could stop vomiting if he wanted to. He wanted to know what the counselor was doing for TJ. The pediatrician requested an upper GI test and TJ vomited the barium liquid and the test had to be rescheduled twice. I had to demand it, but finally, during one of the cycles of vomiting, the pediatrician finally prescribed Phenergan and Zofran to aid in ceasing the vomiting. Between the two medications, Zofran seemed to help the most. The vomiting was so severe, Zofran had to be in a dissolvable tablet just to keep it down.
The Counselor: Dale, the counselor wanted to know what the pediatrician was doing about TJ vomiting. To him, TJ clearly had a medical issue.
The Emergency Room: They believed the trouble was with his bowels and diagnosed him as having an impacted bowel. They prescribed Miralax.
The Pediatric Gastroenterologist: Dr Harry Cynamon/Cedar Sanai saw TJ twice several months apart. He never witnessed TJ during a vomiting episode and told us to come right away when it started again. I drove TJ the 4 hours to Los Angeles and the Dr was able to witness TJ’s vomiting, however, he didn’t feel anything was wrong with him medically until I pointed out his weight loss. He offered no solutions.
The School: TJ’s 3rd grade teacher advised me that she was assembling a meeting to discuss TJ’s illness and the school’s concern for him. She advised me to gather all documentation showing I had sought medical help and what the doctors had determined to date.
Cyclic Vomiting Syndrome: My Mom had researched and found an article about this illness. The symptoms were almost identical to TJ’s, but it required a diagnosis by a neurologist. It took 3 months to get in to see the doctor. Our appointment was for October 27, 2005, Crazy Sock Day.
The Pediatric Neurologist: Dr. Debra Balke liked TJ’s crazy socks. She was sweet and kind and very down to earth. I explained his symptoms and showed her the journal. She proceeded to give TJ a simple neurological exam. She asked him to follow her finger; up, down, side to side. I thought it odd that TJ’s eyes bounced back and forth. Dr. Balke did the test again and calmly showed me that his left eye bounced when she did the test. She diagnosed him with nystagmus. Then, she asked him to close his eyes and touch his finger to his nose. He did fine with the right index finger touching his nose, but missed his nose when using his left index finger. Finally, she asked him to walk a straight line in the hall. He stumbled and wobbled and it looked like he was just being silly. She conducted a few other tests and then said that she wanted to order an MRI. She was so calm, I wasn’t even alarmed. Then she said that the diagnostic center across the street could fit him in that day.
1st MRI: TJ and I went over to the diagnostic center for the MRI. They had him take off his shoes and, of course, they loved his crazy socks! He was so happy that he had worn them that day because so many people got to see them and comment. I was allowed to stay with him during the MRI. We were given ear plugs, but the machine was still very loud and it has a very distinct repetitive sound. TJ lay so still. He was a rule follower and if someone told him not to move, he wouldn’t budge at all. I remember when he got his 1st haircut as an infant, the hairdresser told him to stay still and he didn’t move a muscle. During the MRI, I looked at the tinted glass where the technicians sat to administer the MRI test and all of a sudden, there was a ton of activity. Someone jumped up and ran out and came back in and it looked like they were really discussing something important. I thought to myself that I had hoped it was about a personal matter and not about TJ. After the test was over, I helped TJ off the MRI bed and we started to walk out of the room when a technician handed me a sticky note and said, “Dr Balke wants you to call her on her cell.” It was at that moment that I thought something was really wrong. Before that, it could have been explained. She didn’t want to diagnose Cyclic Vomiting Syndrome without ruling out other possibilities. But that wasn’t it. I called her right away from the lobby with my sweet 9 year old boy anxiously to hear what the Dr says. Dr Balke calmly explained to me that they saw a mass on TJ’s brain and not to worry, it may just be something requiring minor treatment and that’s it. She said she wanted me wait for the MRI scans and not to leave without them. Then, go home, pack a bag and drive TJ to Stanford that afternoon. TJ was standing next to me so I wanted to be calm like her. We didn’t know what it was and it may not be that bad.
I went home, packed a bag, and headed up to Stanford. Lucille Packard Children’s Hospital at Stanford: I told TJ we were going on an adventure and I didn’t know what to expect, but I promised he wouldn’t be alone, I would be with him through everything. (I sadly learned later that TJ anticipated something more like Disneyland than a hospital) Around half way to Palo Alto, Dr Balke called my cell phone and talked to me much of the way. How many doctors would do that? Dr Balke, was truly one of a kind! She told me a little more about what the MRI scans show. She said that TJ has some fluid backing up in the 4rth ventricle of his brain and it’s a pretty significant amount. She advised me to contact her immediately if TJ lost consciousness because she could have a Dr and ambulance meet us where we were on the road. TJ fell asleep, but I was able to wake him, so no ambulance was needed. She also said that they were expecting us at the hospital and to tell TJ that there will be a lot of activity around him and not to worry, they just have to do that to get him checked in and comfortable. I got lost near the university, but eventually found my way to Welch Road in Palo Alto. I pulled in and got a parking ticket and parked close to the entrance. It was dark by this time. TJ woke when I shut the car off. I sat there and explained to him about expecting a lot of commotion inside so he would know what to expet. He gave a sad face and timidly asked if he would have to get any shots with tears in his eyes. It broke my heart because I knew for sure there were going to be needles, but I told him, “I don’t know what to expect, but I promise you I will be with you through everything.” We entered and checked in with security. We went to the admitting office and filled out some paperwork. Meanwhile, a team of individuals came down to greet us. A lot of that night is a blur, but there are also some things that I will never forget. I remember everyone loved his crazy socks. They had to put a scope through his nose to his throat, which he hated. After that test, the hospitalist took me out into the hall and told me TJ had a paralyzed left vocal cord, which was causing his raspy voice and that it’s very common with this type of BRAIN CANCER…
October 27th was “Crazy Sock Day” at the elementary school and TJ was really excited about going. He loved going to school, but this day would be even better because he would be wearing long white socks he decorated with colored markers for “Crazy Sock Day.” Little did we know, his crazy socks would be […]