I've been debating whether or not to update. I hate to write anything when I don't have clear answers, because I've been really stressed out and I don't want anyone else to have to worry. However, I finally decided I will post this because I'm not too fond of re-telling everyone the same thing over and over. Plus, I forget who I have told and then people get tired of re-hearing the same thing over and over ;)
Anyway, last Sunday Kaidan started complaining of pain in her ankles. I know she's had this for a long, long time, but this was different. She was really in a lot of pain. Then came the headaches...bad headaches. She was asking for pain meds. IB only took the edge off a little - tylenol didn't even touch it. She was also having bouts of nausea and stomach pain, so I started getting worried and on Monday I called her pediatrician who said there is a lot of strep going around and that can cause headaches and joint discomfort. I took her in on Tuesday, hoping it was a sinus infection, or strep, or anything that could be fixed with antibiotics that was making her head hurt, but it wasn't. She looked healthy as could be (other than her flushed cheeks and glossy eyes). The pediatrician recommended we go to Primary's and have a CT scan done as well as x-rays of her ankles and some blood work to check everything out. Wednesday we went up to the hospital for all of that. Everything came back normal, except the ankle x-rays. Her pediatrician said they were "abnormal and worrisome". She said she really isn't an expert in orthopedics, but the report said it looked like she it could be osteochondritis dissecans and they recommend getting an MRI done to further investigate.
Here's where the stress comes in. I fight with logical thinking and "crazy cancer mom" thinking all the time. Sometimes, I think the "crazy cancer mom" thinking is the logical one. Anyway, I'm hoping, really REALLY HOPING that the ankles are just osteochondritis dissecans because that can be fixed. I'm angry because her avascular necrosis never should have gotten bad enough to cause this, and if they had just listened to me in the beginning, it wouldn't have. But, you can't change the past, and ankles are just ankles. I mean, you only use them to hold your entire body up when you walk, so compared to cancer, it's a minor thing ;) There is that "crazy cancer mom" part of me that says: 1. Her MRI in November 2009 and her x-rays in November 2010 were all normal, and they all showed no AVN or improvement of the AVN. 2. Her headaches came on super strong at the same time as this ankle pain. 3. They are related and it's not good... Then, my "logical" thinking says: 1. Dumb doctors mis-read MRI's and x-rays all the time, they missed this. 2. The headaches are caused from a very minor sinus infection that is barely visible on a CT scan. 3. They are not related, she is fine.... Then, the "crazy cancer mom" starts again.... You get the picture, right? I have multiple personalities!!
We don't really know what is going on with Kaidan. She is better than she was last Sunday as far as the pain level. The headaches come and go. The ankle pain is pretty bad, but she is still getting around. She gets tired when doing silly things like mopping the floor or trying to dance. Her arms started hurting this morning. She's back to having a little appetite with a lot of tummy issues. Her eyes tell a story more than any words she could ever say; they are glossy and you can see her pain. I am scared out of my mind. I am trying so hard to be positive and believe it is nothing, but I can't help it, I am scared.
Her pediatrician called me tonight and said she finally got someone in oncology, but they completely dismissed her concerns. We want to have a lumbar puncture done just to make sure there aren't cancer cells lurking in her spinal fluid causing her headaches. But, oncology doesn't want to do that. They think it's a virus - oh how I hope it's a virus. I just don't understand why it's such a big deal to just be sure. Why can't they be proactive instead of reactive? Our pediatrician also tried to get in touch with Kaidan's orthopedic doctor, but she had no luck there, so I guess we will be waiting until Tuesday, unless things get worse. The pediatrician advised me to take Kaidan to the ER if her headaches or her ankles get worse over the long weekend. Otherwise, she will call me Monday after she tries again to get someone who will listen.
So, there's the story. I'll update again when we know more.