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The Diagnosis
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Taylor 4 days before being diagnosed with a "huge tumor" in her pelvic area.

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It all started on March 1, 2004.  Taylor and I were getting ready fro a trip to Oklahoma to see family.  As a was packing, Taylor was following me around watching, and she said "my leg hurts."  I thought hmm that's weird.  She never really complained about anything.  I asked her where it hurt and if it hurt really bad.  She showed me that it hurt on the back of her thigh just above her knee.  She was not one to make a big fuss, so she told me that it did not hurt bad.  She seemed to be fine and was walking okay.  So I just kind of let it go.  She never really walked perfect because she had cerebral palsy.  So, I thought that she probably just strained something running around at school.  However, throughout the month, she kept telling me every so often that her leg hurt.  I was starting to get concerned because she seemed to be saying it more and more.  I called her Physical Medicine and Rehabilitation doctor at the end of the month to see if she needed to be seen.  I told her what Taylor was describing, and she said it was probably growing pains since she seemed to complain more about it at night.  She suggested that I give her Ibuprofen before bed every night for a couple of weeks and see if this helped.  I did this, and it seemed to get better.        

Taylor at The Caroline School carnival approximately one month before they found the tumor.  She was limping and did not want to eat much on most days.

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By the time mid April came things seemed to be getting worse, not better.  The ibuprofen seemed to only work for a short time.  She was complaining again about her leg hurting.  She seemed more desperate about it.  It was starting to wake her up some nights.  This concerned me more than ever now.  By the middle of the month, she had started limping.  This was very strange to me.  THIS WAS NOT JUST GROWING PAINS.  I immediately called the PM&R doctor again and requested to be seen ASAP.  She was scheduled within a few days.  During this time, I was looking at pictures of her and noticed that she seemed thin to me.  She had always been a little thin, but it seemed more so now.  In the days before the appointment, I started to notice that she did not want to eat.  Sometimes she would barely eat and other times, she would refuse to eat at all.  This was really strange since she had always been a good eater.  The appointment came around, and the doctor watched her walk.  It is important to point out that Taylor did not walk perfect because of her cerebral palsy, so it was difficult to see that she was actually limping if you did not know her.  The doctor said that she did seem to be limping a little bit.  She looked her left leg over and stretched it and moved it every way.  She said that it felt tight.  She thought that she had probably pulled a muscle that was having a hard time healing because of all the effort she has to put into walking.  I was not so sure about this because of her appetite loss.  So I talked with the doctor about her appetite loss.  She was a little perplexed by this, but thought that it might be related to medication she was on.  Taylor had a seizure disorder.  Her dose had been recently raised because she was having several seizures a month.  Some seizure medicines are known to cause appetite and weight loss in children.  So, she thought that maybe the increase in dosage was causing this.  She also offered the explanation that the pain she was in could be causing her to not want to eat.  She explained that it was very painful to injure the muscle that she had, and that her loss of appetite might be because of that.  She prescribed us stronger ibuprofen and gave us a leg brace for her to wear every night for two weeks.  She said to call her back if she was not better in two weeks.  I did not feel much better after this appointment, but I really did want to believe that was all it was.  It kind of made sense.  I also called her neurologist when I left the appointment to ask about her seizure medication causing her loss of appetite.  He seemed skeptical about this since it had never had this effect on her before.  He said it was possible though.  He said that it should resolve itself once her body adjusts to the increase in dosage but suggested that I supplement her with Pediasure until she got her appetite back.  All of this did not sit well with me, but I set out to do everything they said so I could get her better.  That was my goal--to get her better.

            

Taylor soaking up the sun in Mimi and Papa's pool about 6 weeks before they found the tumor.

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