It has been four years since my beautfiul boy was diagnosed with neuroblastoma. I never entered our first days in the hospital on this blog so I thought today would be a good day to post the entries from those first days. It has been four years, but it seems like just yesterday….
September 28, 2007
Chase woke up this morning with a stiff neck. He acted fine, played pretty good and ate good. After a few hours, I noticed that he was not moving it at all. He would only lay down on the couch and would cry when he got up. Around noon he started to run a fever. I started panicking at that point. I thought for sure he had meningitis. I called Rich several times and told him to come home. We went to the doctor at 1:45. Upon arrival at the doctor, he was still running a fever, but it had started to go down on its own. Dr. Tillman was very concerned and sent us down to MUSC. They gave him Motrin at the pediatritian’s office and within 20 minutes he acted fine, but he still was not moving his neck. After waiting 4 hours in the ER, we were finally seen by the doctor. They did a CT scan of his neck and blood work. The CT came back fine and his blood work was good except a high sedimentation rate. A high sedimentation rate shows that there is inflammation somewhere in the body. There are many things that can cause this to be high. About two weeks prior to this, Chase started limping on his right leg complaining of pain around his knee. I had taken him in and we had an x-ray done that was negative. A week and a half later, he started limping on his left leg. I took him back to the doctor and we did an x-ray of his hips, also negative. I explained the previous episodes to the ER doctor and they were leaning towards rheumatoid arthritis. We saw the rheumatologist that were on call that night and they wanted to do a CT scan of his abdomen and hips. I couldn’t figure out why they would do a CT of his abdomen when he was complaining of neck pain. It seemed odd to me. At this point they decided to admit us and run further tests. They quickly ruled out meningitis because they said he was not sick enough for meningitis. They did not have any beds available so we spent 24 hours in the ER. Finally on Saturday evening, we got a bed on 7A.
September 29, 2007
We were finally moved upstairs to a room. We first met Saeed a medical student assigned to us. He came in and evaluated Chase. The plan was to admit him and wait for Dr. Ruth to come on Tuesday to examine him. Tasha Ruth is the pediatric rheumatologist. The ones we saw in the ER were adult rheumatologists and they wanted the peds doctor to see him. Dr. H was our attending on call this weekend. He knew they wanted to do the CT of the abdomen and legs, but disagreed. He opted for an x-ray of the legs instead. He came in and pushed really hard all over Chase’s abdomen and couldn’t feel anything. He thought it was unnecessary for the CT and it was too much radiation for something that may not need to be done. I still didn’t know why pushing on his abdomen would rule that out. I was still concerned about his neck. We did x-rays that night of his legs and hips that came back negative. He was started on Naproxen for the neck pain and it got better. Again, they thought rheumatoid arthritis. Naproxen is what they use to treat arthritis and it was working.
September 30, 2007
Dr. H went over the CT of his neck with the radiologist extremely in-depth. They could not find anything. They were looking for any infection or tumors. Nothing. So we continued with the Naproxen and waited for Dr. Ruth.
October 1, 2007
Dr. Teufel is now our doctor. We love him. He is so easy to talk to. We also have a student nurse who is with us today. Chase loves to go and play in the Atrium. He seems to be getting better. Logan came to visit us today and they played together in the Atrium. I am starting to feel as though we are on an episode of “House”. The doctors keep coming in and asking all kinds of questions. They are trying to put together pieces of a puzzle. In the meantime, Chase is no longer complaining of his neck. The fever is gone. Dr. H. said “This might be one of those times we just shrug our shoulders…and never figure out what it was….could be just a virus.”
October 2, 2007
We woke up this morning ready to be discharged. Dr. Ruth was back in town. We were finally going to see the pediatric rheumatologist and get the answers we were looking for. In my eyes, they were going to tell us he was fine and we were going to go home. Chase was in the playroom when Dr. Ruth finally came. The last thing we wanted to do was pull him away from his favorite place, but this was the moment we were waiting for. As I walked to the playroom with the pediatric rheumotology fellow to get him, she asked me if there was anything else she should know about. I mentioned to her in passing that he was getting really sweaty at night. REALLY SWEATY…to the point of having to change his pillow case several times during the night. I really didn’t think much of it, but her face went long. It was then I knew something was up. We brought Chase back to the room where there were about 50 doctors (not really, but it sure seemed like it). Dr. Ruth and Dr. Teufel were talking to us and we were going over all of Chase’s symptoms. She was asking him questions (about Thomas the Train) and was very impressed with his vast knowledge! I brought up the night sweats again to both Dr. Ruth and Dr. Teufel. It was then that I first saw “the look”. I turned and looked at my mother-in-law and whispered “Did you see that look?” She looked back at me with concern…and nodded. The entire team of doctors then left the room to discuss things in the hallway. I knew it wasn’t good. But WHAT could it be? Dr. Ruth and Dr. Teufel came back in the room…alone. They sat down and said “We need to do a CT of his abdomen.” I thought, “We are back to this again?” This was what they wanted to do when we were first admitted five days ago. It was then that I first heard the “N” word. Neuroblastoma. What is the world is Neuroblastoma. I still didn’t associate the “N” word to the “C” word. They assured me that it probably wasn’t neuroblastoma, but a CT would confirm it. So this is what they were thinking from the get go, but the symptoms were so vague, they didn’t pursue it until I mentioned the night sweats. Later that evening, Chase went down for a CT of his abdomen. CT’s are very quick scans (only 5 minutes) but because he was 3, they put him to sleep to be sure he didn’t move throughout the scan. They were also doing an MRI of his neck and a bone scan all at the same time which takes over an hour. We took him into the small room with the anesthesiologist. I had no idea what to expect. I had no idea this would be the first of hundreds of times I would watch my son be put to sleep. I was holding him tight in my arms. They injected the “milk” (propofal) into his IV. Within seconds, he went limp in my arms. This was not asleep limp. This was dead limp. The look on his face was terrifying. His eyes were open, but rolled back in his head. For the first time since we had been admitted…I lost it. I turned and ran out of the room. The following hours of waiting were absolute torture. Waiting for him to finish scans. Waiting for him to wake up from anaesthesia…praying he does wake up. Praying the scans are clean. Praying this is all a nightmare. Praying for a miracle. At 9:00 p.m. on October 2, 2007, Dr. Teufel entered our room. He was off duty. Had been home for hours. Little did we know at the time that he was at home asking his wife if he should come back and tell us tonight…or wait until the morning. As a father of two little boys the same age as Chase, he knew what needed to be done. He entered our room and said “We need to talk. I will have a nurse come sit with Chase.” We left the room and followed him down the 7th floor corridor from unit 7A to a small conference room on 7B. It was the longest, quietest, walk. Little did we know that 7B was soon to become our new home….for the next year. We sat down in the cold room. I saw it on his face. He didn’t even need to say anything at all. The first words out of his mouth were “The CT showed a mass on his adrenal glad.” Mass? MASS? “We won’t know for sure what it is until we biopsy it, but it is classic of Neuroblastoma.” The sick feeling in my stomach began creeping up. I think I actually stopped listening at this point. I froze. “In babies neuroblastoma is 95% curable, but Chase is a little old which makes the prognosis worse.” Old? He’s 3! How can he be old? He kept saying that maybe it wasn’t neuroblastoma because they had to biopsy it, but I know that he knows. I can’t believe it. I am in shock. My 3 year old son has cancer.