How Tayor was diagnosed with Neuroblastoma...

On Thursday, August 22, 2002 Taylor got sent home from day care with a severe case of diarrhea. On Friday Gram kept Taylor home with her. Mommy came home for lunch and noticed that Taylor was limping. We thought nothing of it at the time. We just assumed it was due to the diaper ointment and sever diaper rash. Taylor continued to limp the rest of the weekend. Finally, on Sunday, August 25, we went to the pediatrician. It being Sunday, we got the Doctor on call, Dr. Goldblat. He totally dismissed it as diaper rash or a small sprain from a fall. Taylor had fallen off a toy at daycare earlier in the week, so we were satisfied with this answer. However, that night Taylor seemed to limp worse and the runny diapers were back. Jim took off work on Monday, August 26, and took him to see Dr. Petelos, our regular pediatrician. He was a little more concerned because that morning Taylor had blood in the stool. He sent Them to St. Vincent's to see Dr. Killian, an orthopedic specialist. Jim took him and had a very long day. Taylor had the first of many blood tests, ultra sounds and x-rays. Dr. Killian diagnosed him with a sprain and told us to come back on Wednesday to be re-evaluated. I took the day off on August 28th and went back to Dr. Killian. We tried to get Taylor to walk, but he wouldn't. I went to the other end of the hall and tried to get him to come to me. Taylor was petrified, so he ran. Dr. Killian said if he could run he was fine. He said he probably fell and fractured the gristle of the bone and it just didn't show up on the scans. He said this would heal itself with time. So, off we were satisfied that we had gotten to the bottom of the matter.
Life was back on track. We closed on our house on August 30, 2002 and flew to Las Vegas the same day. we had a blast while we were gone, but we missed Taylor very much. We called to check on him to find out that once again he was limping and also had diarrhea and a low grade fever. I was a little upset, but not too concerned. We landed back in Birmingham on Wednesday, September 4th. Pam and Eddie came to pick us up and surprised us by bringing Taylor. It was a little discouraging to see him refusing to walk. We were very concerned at this point and headed straight to Children's South for after hours care. We saw Dr. Yu and had what I consider to be the worst trip to the doctor ever. He made him walk back and forth and look at him walk. We did more x-rays and blood work. He tried to tell us he had a splinter. Like I couldn't look and see if he did. We asked if it could be a very bad stone bruise and he had no idea what we were talking about. He gave us a prescription for a pain medication. We didn't have time to fill it since we were in the doctor all night. We were very upset with the outcome of that visit, so I took yet another day off work to go see Dr. Petelos. He said DO NOT take the medication he prescribed. He was still very concerned with the matter, but had no answers and suggested we go back to Dr. Killian. We called and made an appointment for that afternoon. Dr. Killian was off that day so we saw his partner, Dr. Mayberry. She ordered the same old stuff, ultra sound, x-ray, and blood work. We came to the conclusion that he had Toxic Synovitos, a hip disease that is caused when fluid is built up after an injury. We agreed since Dr. Killian had mentioned that often a fall with fluid build up could lead to that. They said it was a flu like disease and would go away in a week or so. In the mean time Taylor was miserable. He cried all the time, he wasn't eating and refused to stand much less walk. We were a nervous wreck, racking our brains for an answer and praying it wasn't our worst fear, cancer.
We just waited for the problem to go away, but it didn't. Rather, it was getting worse. On September 12, a week after they decided it was toxic synovitos, we went back to Dr. Mayberry. This time we were starting to get mad at all the trips to the doctor with no answer. We did our usual ultra sound, x-ray and blood work. This time it was an extra hassle. We didn't get to trudge all over St. Vincent's this time we had to go to Children's to get the ultra sound because SV's pediatric tech. had already left for the day. Jim and I both talked about how depressing it was to see all those sick kids. I was so thankful I wasn't a parent dealing with that type of thing. I knew I just couldn't handle it. This ultra sound showed fluid build up around the hip. This lead to the diagnosis of juvenile rheumatoid arthritis. We were so upset. Our little boy was going to walk with a painful limp forever. He would never play ball or run or do the things little boys do. He would be in to much pain to do those things. He was put on Motrin around the clock. He took this very well in the beginning, but it turned into a battle. We scheduled an MRI for September 20th, to see which joints were involved and to figure out a course of treatment for the JRA. While we waited on that day things stayed the same. Taylor was getting no better and the days were horrible for us all.
MRI day finally came. Gram and Mommy took Taylor to St. Vincent's at 8:00 in the morning. It was the worst experience any of us had ever had. They wrapped Taylor in a blanket and 4 people, two of them being Gram and Mommy held him down while they made 5 attempts at an IV. We cried more than he did. It was so awful watching him in pain. He just stared up at us and you could tell he was asking for help and we were the ones holding him down. They finally gave up and rescheduled the appointment. We had it scheduled at Children's where we would get a nurse that was use to working on kids.
The days that followed were the worst we had had so far. He moped all the time and refused any food. It was taking a toll on all of us. We were really beginning to fear the worst. On Monday, September 24th, Taylor had an awful day at daycare. That afternoon on the playground, he sat in his teacher's lap rather than playing. That was not unusual, but he was almost catatonic. We left immediately and made a Dr. appointment for the next morning. We saw Dr. Anderson because Dr. Petelos was off. He knew I was very concerned. He did blood work and assured us it was not cancer because nothing came up in the blood work. PaPa went with us, and before we left the room, he asked Dr. Anderson, "Now, you have totally ruled out Cancer? Correct?" Dr. Anderson replied, "yes, I'm 100% sure its not cancer and almost positive its JRA." He had a bit of a virus and a raspy sounding chest. He gave us prednisilone, a steroid, for his chest. It really worked. He was back to normal. Finally, he was himself again. He was running and jumping. We thought he had really had the toxic synovitos and that the medicine had fixed it. We were so happy. After a week we were right back where we started. I called Dr. Mayberry to see if we could get more of the steroid, but they said no. They wanted to see him again. Still thinking it was JRA, she scheduled an appointment with a rheumatologist. So, we were back to waiting and we would be for a long time. The soonest appointment was November 13th. We had over a month to wait.
During our wait Taylor was getting worse everyday (he ran a fever for 12 straight days). We called Dr. Killian on Sunday, October 6th. He wanted to see him in the ER, but we decided to just go in the next day. We talked a long while about the last few weeks. He had seen Taylor initially but once we had to see Mayberry they just kept us with her. He asked had she done a bone scan, and of course she hadn't. She always did the same 3 tests. We went in early the next day expecting to see Dr. Killian only to find we got Mayberry again. She still made no mention of a bone scan and when we mentioned it she saw no need. We told them we wanted an appointment with Killian, we were fed up with the same old tests week after week. She agreed to do it. We had an appointment at Children's Hospital on Thursday, October 10th.
Dr. Petelos called me at work on October 8th. He wanted me to bring Taylor in the next day. I told him I couldn't miss anymore work and we had to be at Children's on Thursday. He demanded to see us. So, I took a long lunch and brought him in. He had gotten his blood work form earlier in the week and Taylor was anemic. He did more tests to see if it was lack of eating or an iron deficiency. He thought that maybe he was fussy from being so tired and maybe refusing to walk from a past injury that turned into an "I know you'll carry me if I cry thing". I was beginning to think that myself since we had explored every avenue. He made some calls and got all the appointments for November moved up a little and hopefully we would get to the bottom of this. I went back to work feeling a little closer to an answer. I still think deep down Jim and I already knew what was coming. We had talked on several occasions about it being cancer. Taylor kept having bumps on his head in places you wouldn't bump your head. He hated to have his hair washed and his diaper changed. All the things that use to be so simple and routine were now a constant battle.
October 10, 2002: Jim, Pam and Taylor went to Children's hospital for a bone scan. This was to determine which joints were involved with JRA. Taylor was injected with dye around 8:30 and had the first part of the scan at 10:00. Jim called me at work and left me a message that the first part was over and Taylor was eating breakfast. I was a little nervous all day, but I was doing okay. I will never forget the next few minutes. Jim called and the scan was over. He wanted me to come to the hospital. They had found a mass on his left adrenal gland. They didn't know yet if it was a tumor or a pocket of infection. I was sitting at work with Brooke in my lap. She probably thought I was crazy. I hugged her and just cried. Children are so innocent. She just looked at me and held my face between her little hands and said, "Don't cry miss Kim, it'll be okay." Oddly enough that was all I needed to calm me down. Well, calm me down enough to carry on with my work without upsetting the kids. I buzzed Lisa and told her I had to go. She was very understanding and off I went. I had to track down my mom and once I did that we were headed for the hospital.
I was a nervous wreck on the way. We talked a lot about it and by the time we go there we were laughing and joking. We had come to our own self-conclusion that it wasn't cancer because his WBC had been fine (after numerous blood tests over the last 2 months). (Because you all know I was a blood count expert before all this happened:) We took our time getting to the room even stopping by the restroom first. We finally got to the clinic where they were waiting and asked what room he was in. The receptionist acted funny and had us escorted back. I thought it was odd, but didn't put to much thought into it. When we went into the room my world fell apart. I saw Taylor laying in a wagon looking awful and Jim sitting in the corner, hands over his face, sobbing. I knew without asking that my worst fear had come true. I lost it. I had no tears all I could do was scream and ask why. I had a billion things running through my mind and couldn't focus on one long enough to even comprehend what was going on. We were taken to another clinic. Clinic 5, that has now come to be a normal part of our lives. That day it was the worst place ever. We learned our son had stageIV Neuroblastoma, a rare cancer that affects the sympathetic nervous system. He had a tennis ball sized tumor on his left adrenal gland. Dr. Berkow, gave us news no parents want to hear. Our son had a 30% chance of long-term survival. We also learned that if he did go into remission, it was 70% likely Taylor's cancer would come back. We were floored. The things that you try to comprehend, and the things that come into your mind at a time like this are unbelievable. You question God, yourself, the world we live in. You ask why? how? when? You try to find ways to blame yourself, hoping it will make it easier. The problem with this rare cancer (500 cases a year) is that they do not know what causes it. You want to take every pain that your son has, and wish it was happening to you instead. The road that lies ahead is unfamiliar, un-traveled. It is a road that no one wants to go down, ever. I can remember back 15 years ago, and I didn't know one person that had cancer, but today, even before learning of Taylor's cancer, it seemed like we knew dozens of people, some relatives, who have experienced cancer. But why should the innocent have to deal with such a heavy and unforeseen burden? We learned treatment options, all about counts and blood cells and what kind does what for the body. Plus numerous other things that one who did not attend medical school shouldn't have to know.
Taylor had surgery to remove the tumor on October 15, 2002. They were able to remove the entire tumor. That was good news, but we still had bad news to follow. Taylor had bone and bone marrow involvement. At diagnosis, 50% of Taylor's bone marrow was cancerous. He had "uptake" in both legs, his spine and the frontal part of his skull. Our journal picks up a few weeks after surgery, and now you know, the rest of the story.
To Continue the Journal, please visit the News Archives, with journal entries dating all the way back to October 2002.