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| Date Entered at Shared Experience: 05/23/2000 |
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SARCOMA SKELETAL |
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In July 1999 my 14 yo daughter was diagnosed with Osteogenic Sarcoma in her left distal femur. She had been having knee pain and after a visit to the doctor we were told to take Motrin and apply ice, which helped for a while. When the pain persisted I took her to an orthopedic surgeon who diagnosed her. We were referred to a tumor orthopedic specialist and within one week she had a port put in and had started chemotherapy. It is 11 months later and I am still in shock. |
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Our protocol called for 2 rounds of chemo prior to limb-sparing surgery. She had Doxirubicin, Ifosfumide, and Methotrexate. After the surgery Cisplatin was added. The chemo started the end of July 99 and we have one more admission to go. We will be done the second week of June!!!!! God willing. I also gave her neupogin injections after the Doxirubicin and Cisplatin treatments to help recover white counts. We were on the other usual oral medications and were VERY LUCKY to really have minimal side effects. We gave up the oral rinse and lozenges months ago. While we don't recommend this for others that might be more prone to mouth sores, we really didn't have that as an issue.
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We have spent over 100 days and nights in the hospital getting chemotherapy. We were fortunate in that we were only admitted once for infection and that was after the very first chemo. After that we laid low and never went in again. We figured the scheduled admissions were more than what we wanted so fought for no extra inpatient time. We had the usual platelet and blood transfusions. The first one freaked us out, but then we realized that this was part of the treatment and was to be expected. My daughter was able to have the limb-sparing surgery because of her age. The surgery was in oct 99 and resulted in a knee and 7 inches of femur bone being replaced. She had 58 staples. The surgery was much bigger than we expected. She recovered nicely however and is getting along well with the titanium replacements. She is only able to bend her knee to 98 degrees. We are, however, grateful for that as in the beginning the surgeon thought he might have to give her a "stiff knee". We are just happy that we didn't have to amputate. |
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Our quality of life while undergoing treatment was questionable at times mainly in the emotional areas for me. My daughter was wonderful and for the most part maintained a wonderful attitude. She missed about 1/2 of the first semester because of the surgery. The second semester of school was better and she has attended a lot more. Her grades have been all A's and one B. It was hard to keep up but we refused to let cancer change the fact that she was an A student. I think the social aspects for her were the hardest. It was her freshman year in high school and even though the social worker and oncology nurse went to the school and talked to the kids - she was pretty much deserted by most of her friends. "Out of sight - out of mind". That hurt her and me alot!!! Especially because in the beginning everyone rallied around - so to have it just stop was somewhat hurtful. Her friends had parties that she didn't get invited to, etc. On the good side though she did meet some new and wonderful people. Back in the fall after school started she met a wonderful boy through a friend she would have never met if it hadn't been for the cancer. He has since turned into her boyfriend and has been wonderful for her spirits. This young man doesn't care that she doesn't have hair or eyelashes or eyebrows. He took her to the Prom and told her he was so proud to be with her - that she was the prettiest girl there. He sends her cards on the computer - e-mails her and comes to the hospital to visit. Her friends stopped coming AND calling in October last year. This boy is wonderful and is an angel sent from God. She has also met a couple of girls through him that have been great.
I had to quit my job to get her through this and though I know I did the right thing it has been very hard on me emotionally and on the household financially. I just trust that God will get us through this and so far he has.
I had many issues with the care she received in the hospital. I'm sure the nurses will be glad when we are gone. I caught many mistakes - none life-threatening but could affect the care. I accept NO mistakes. I have logged them all and discussed them with the president of the hospital. No one should have to go through what we have. My goal is to make it better for the next person - which I wish there wouldn't be a next one but we all know there will be.
Overall I never thought we would get through this. I have learned to give injections and in a sense have become a nurse. We have learned what it's like to be "the other person". After all, isn't this something that happens to "someone else"????? Well, it happened to us and we want to do everything that we possibly can to help others that are going through this. When we went to the hospital it was a major production. We took a computer, blankets, pillows, suitcases, radios, clocks, magazines, tons of food, and whatever else we would typically have at home. We took Christmas decorations, lights and even a tree at Christmas. We made our room as homey as possible. We got teased alot but we didn't care. If you have to spend that much time there - it was worth it. You need to keep your life as normal as possible.
I have met many people who are going through this. If you are one of them and we haven't been in touch, please contact me at BigSmile55@aol.com I would LOVE to hear from you!!!! God Bless |
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Doctor Information:
Rate as Information Provider: 4
(1="very poor", 5="best")
Receptiveness:
(1="very poor", 5="best")
Method Used for Choosing this Doctor: Referred to surgeon - researched local oncologists |
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