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Process leading up to Diagnosis May 1998 - Owen began having fevers every night. We would give him a dose of Tylenol, and he would be fine until the next night. This went on for several weeks. The pediatrician had us keep a log of what the fevers would range (101- 103). He then decided to do labwork and start Owen on Naprosyn (anti-inflammatory). The labwork only showed that he had a high sed rate. The fevers immediately went away due to the Naprosyn. The pediatrician later diagnosed Owen with Juvenile Rheumatoid Arthritis (JRA) and scheduled him to see a specialist at Nemours Childrens Clinic. July 1998 - Owen saw the specialist, Dr. Tolymet. He could not rule in the diagnosis of JRA based on the tests that were previously done. So he explained the battery of tests that he would run, but they would have to be done one at a time in order to rule any other diagnosis out. |
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D - Day (Day of Diagnosis) October 6, 1998 - Owen had his first CT scan of the head and neck done at Wolfsons Childrens Hospital. Afterwards, Bryan and I were asked to wait in a room while they called Dr. Tolymet and he would come speak to us about the results. Right away we knew they had found something serious or we would have received the results at a follow up visit like so many times before. He explained to us that lesions were found, a Hematologist/Oncologist (Dr. Sandler) would be notified, and Owen was to be admitted to the hospital. The next day a bone marrow biopsy and a skeletal survey was done. The final diagnosis of Histiocytosis was made. He had lesions almost everywhere: arms, legs, pelvis, scapulae and innumeral lesions in the skull. (Picture of a skull lesion - to give you an idea of what it looks like.) |
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Getting started with chemotherapy October 13, 1998 - Owen had his first visit to the Hematology/Oncology clinic at Nemours. Dr. Sandler explained the six month protocol of Vinblastine, prednisone, and 6-MP. October 15, 1998 - Port-a-cath was implanted in his chest. This is a direct access to a large vein in which the chemo is administered and blood can be given. His first dose of chemo (Vinblastine) was given before going home. |
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November 12, 1998 - Owen's first visit to the Emergency Room. He was running a fever of 103. It was at this point we learned somewhat of how different a healthy child and a child on chemo are. Naturally, we gave Owen a dose of Tylenol and called the doctor who was on call to report the fever. He explained to us that it is important to find out that Owen's counts haven't dropped dramatically or he doesn't have an infection at the port - a- cath before giving Tylenol. He sent us to the Emergency Room for lab counts and an x-ray of the port. Everything was ok so an antibiotic was infused. This took approx 20 minutes. The fever did not come back. | |||||||||||||||||||||||||||
March 28, 1999 - Owen started falling down continuously without any cause. We took him to the ER, but he was released because it had stopped by the time we got there. The next morning he was not able to stand up at all. Bryan and I took him to Nemours, and Dr. Sandler decided to admit him into the hospital for tests. A CT scan, skeletal survey, spinal tap, bone marrow biopsy, and MRI of the brain was done. Nothing revealed the cause of Owen's falling down. The only thing the tests did show were that Owen had NEW lesions which meant a new treatment protocol would be started. March 31, 1999 - Owen started VP16, Vinblastine, and prednisone. This was another 6 month protocol. |
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Some Good News September 1999 - Owen's x-rays and tests showed that he was in clinical remission. The doctors gave us a choice of stopping chemo or continuing for the next three months. We chose to continue just to be on the safe side, and Owen was tolerating the chemo really well. |
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Some Bad News January 3, 2000 - Owen was scheduled for a CT scan and last dose of chemo. Unfortunately, the the scan showed new lesions on his skull. January 6, 2000 - Started on Vinblastine and high dose methylprednisolone. February 9, 2000 - After two rounds of this protocol, x-rays were done. |
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More Bad News February 14, 2000 - The results of the x-rays showed even more new skull lesions. Started VP16 for three days every three weeks. March 23, 2000 - Again, x-rays showed that this chemo was not working March 27, 2000 - Started 2CDA for five days every three weeks for the next six months. May 4, 2000 - Scheduled for CT and x-rays, |
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Click on Next to take you to the Update section. It will bring you up to date on current information.. | |||||||||||||||||||||||||||
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