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April 6, 2003 -- Interim Maintenance #1 (Day 42) Katie had her fourth and final PT visit from Karen of North Penn Visiting Nurses on Tuesday (4/1). I wasn't very happy with the care she was getting. The first and fourth visit were spent doing paper work and not doing anything to help Katie. I asked that she be discharged and was going to have her re-evaluated by an Orthopedist. Katie had her Interim Maintenance #1-Day 42 visit to the clinic on Wednesday (4/2). She had her blood drawn for a CBC. During her blood draws, she always calls for her daddy. This week when Kathy (the lab nurse) asked where her daddy was, Katie replied tearfully "He's at work. He has to make money." It was hard not to laugh! While we waited for counts, she colored pictures for her "friends" (the nurses). Her ANC came back at 975. On Friday (4/4), Katie had a follow-up appointment with an orthopedist down at CHOP. Dr. Dormans specializes in orthopedic care for children with cancer. He had requested we bring all of her previous x-rays, bone scan and tests she had done previous to her diagnosis. We had received everything from Abington Hospital and the first orthopedist, except the bone scan and blood work results. I wasn't too concerned about the missing files until we started talking to the doctor. Katie had an x-ray of her back. Dr. Dormans said that Katie's inability to walk is due to weakness in her muscles from lack of use. Her bones are healing nicely, but there are still spinal compressions in the lumbar region. He also pointed out that Katie has osteoporosis and showed me the comparison of her bones from prior to diagnosis to the x-ray they had done Friday. Dr. Dormans mentioned that he was curious to see the bone scan that was done on 12/20/02. I told him that they were not given to us from Abington Hospital. He was going to ask to have the results faxed to him. I asked what he was looking for in the bone scan. He said that bone scans are used to find abnormalities in the bone, such as cancer or infection. That made my heart sink. Dr. Dormans recommended that Katie get physical therapy three times a week at the CHOP Specialty Care Center in Chalfont, and be fitted for a walker to help her build her strength and balance. Due to her osteoporosis, he warned us to be careful that she doesn't fall because her bones can break very easily. He also wants her to have a DEXA scan to determine the severity of the osteoporosis, and will advise us of a schedule of how often she will need the DEXA scans to keep a close watch on her healing progress. He is going to contact Dr. Rock (Katie's oncologist) to discuss drug therapy to help boost her bone density. By the time I got home, it was too late to contact Abington Hospital regarding the missing films for her bone scan and the missing lab results. I got online to investigate more about bone scans. These tests were requested by the first orthopedist, but he never received them. I got a sick feeling in my stomach thinking back to the days prior to Katie's diagnosis. My husband and I were both with Katie the day she had her bone scan on Friday 12/20/02. We had her blood work drawn first (around noon) and asked the technician that we, her orthopedist and pediatrician be notified of the results that same day. We went for her bone scan which took at least four hours to complete. They sedated Katie because they needed her to be still during the scan and injected her with the radioactive dye. As they were scanning different areas of her back, they came across some "difficulty" when they got to her lower back and pelvic area. They catheterized her to get any urine out of her bladder and we wiped down all of the equipment and her body to remove any of the dye residue that may be present. The doctor, nurses and technician, who were not familiar with pediatrics or children's diseases, could not figure out why her entire pelvic area was lit up. The doctor who looked at the scans suggested we go to a urologist. By the time we were done, it was 4:30. It was the weekend before Christmas and the hospital was in vacation mode. The lab with her blood results was closed. The hospital never contacted us, her orthopedist or pediatrician with the results of her bone scan or blood work. That bone scan, with her entire pelvic area and lower back lit up like a Christmas tree, was showing that there was cancer present, as was her blood work! No one bothered to inform us!!! Fortunately, three days later, we went to a CHOP urologist who knew immediately that the lab results looked like cancer, and he sent us to Children's Hospital. It upsets me every time I think of what Katie went through to get the proper diagnosis. The local hospitals in the area say they can handle children, and they claim that they have pediatricians on staff, but with every visit we made to Abington and Doylestown Hospitals, we never came across one. In fact, during one trip to Abington Hospital's emergency room, the doctor treating Katie suggested we go to Children's Hospital!! For all parents out there with young children, be aware that local hospitals may not be equipped to handle children, especially in an emergency. We've certainly learned our lesson. Enough of my lecturing. Katie's doing good this week. She only had a little nausea and is still very active. There hasn't been any improvement with her walking in the past week, though. I'm looking forward to getting her set up with a local PT facility and getting her walker to help her get around. Katie loves telling people what she is going through. On many occasions, she's taken her hat off and said, "Look, I don't have hair! It fell out because I have nukenia." "I have a port right here (pointing to her chest). The doctors put tubies in there so I get fluids." "When I take my medicine and put stickers on my chart, I get a prize on Saturday." And, the one that breaks my heart every time she says it is, "I take my medicine and and get my finger pokes, but my nukenia didn't go away yet." We just keep telling her that Leukemia takes a long time to go away, and she'll be 5-1/2 years old before she'll be done taking all of her medicine. Once she responded, "Wow! I'm be almost a teenager!" |
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