Tuesday, February 3, 2009

The stages of leg pain fear

Some days it is easier to write than others. I have two things in my life driving me nuts. Of course, it should come as absolutely no surprise that both of them have to do with neuroblastoma. One I know I can talk about. The other, well, I guess I am going to have to dig really deep not to make the entire world mad. So, for the sake of safety, I will start with the easier to talk about of the two. The second I will continue to think about - maybe tomorrow. It will probably shock you that this is the easiest one to talk about but here goes.

So, while I was in Chicago, Sydney apparently started having some leg pain. It wasn't crippling but she did limp at a few points during the day. When I saw her she was still having some issues but, to be honest, I did not pay too much attention to it. Over the years I have developed a balance. I have a tolerance for freaking out which has grown much larger over time. It takes something fairly significant to get the hairs on my neck to stand up. So, when I tell you that Sydney has leg pain it is something that I am acutely aware of but not something that makes me scream neuroblastoma. There is a process. There are steps and stages to terror. This was merely step number one.

Pain in the leg is significant. However, the cause can come from 1 million and 7 different things. There are lots of factors that we consider such as the location, appearance, and whether the pain changes with time. Frankly, using our eyes, hands, and a little thought we can usually find a cause that is probably not neuroblastoma related. But, when we have pain that is in a spot that is a known place for neuroblastoma related pain and we can't immediately rule it out, we begin to progress past step two.

Step three is the waiting game. In its most simple terms we are waiting for the pain to change. Ideally, we are hoping that it disappears. Thankfully, it usually does. However, sometimes it gets worse. Sometimes she wakes up in the middle of the night with leg pain.

That was Sunday night.

That is the scariest of all signs and the one that makes me the most nervous. However, you may also note that I am not running to the oncologist. I am not rattling off emails and I don't have phone calls in to 5 of the top neuroblastoma specialists on leg pain. We are waiting and watching.

Scary stuff huh.

The pain is in the middle of the right thigh - known location. It is intense enough that she limps. It is also enough that she woke up in the middle of the night from the pain. This is stage 4 fear.

Now, the good news - the news that makes you not freak out and makes you stop wondering why we aren't sitting in an oncologists office right now - is that we gave her Tylenol and the pain went away. We also made her go to Tae Kwon Do yesterday afternoon. We wanted to see what stretching it out would do. I can tell you that she only flinched once and frankly I would have flinched as well. The rest of the time she did absolutely everything expected of her. She did it well and she did it without reservation. In fact, she spent most of the lesson working on her snap kicks and round house kicks.

By the end, the pain was gone and she spent the rest of the evening without an ounce of pain. The big test now was making it through the night.

She did. In fact, she just came down and told me that she slept beautifully.

She does have pain. It is better.

I can't tell you what the rest of the day will hold. Honestly, I can't even tell you that this is absolutely not neuroblastoma. I can't even tell you that we are feeling much better.

This was a jolt to our psyche and something that we will watch closely but something I am so thankful was not worse.

My purpose still scares me. I am just better at being scared.


Dawn said...

Your post rings so true. It's really hard to differentiate between what is neuroblastoma and what is normal kid pain. Everything is a symptom. We pray all is well.

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