It was fun while it lasted. I was "this close" to picking a vacation spot this year, either it would be Key West or closer to home, Ocean Isle. After much discussion we agreed that the boy, who hates the beach, wouldn't have to come with us. After all he would be 18 and hopefully working somewhere. The girl, who loves the beach, wanted to make sure she would be included in any plans we made.
This summer would be the first time in three years we would have a "real" vacation. Going to New York, as we always do, doesn't constitute a vacation in my eyes as there's always work to be done at the house and is often stress-filled. There's always the pressure to visit people we really don't want to see, but luckily since we've been "banned" from some on my side of the family that's not as big a problem as it used to be. It's always a hurry, hurry, hurry feel with too much to do and too little time. Sometimes it's just nice to be able to do nothing but lie around listening to the surf hit the shore. So that's what I was looking forward to.
Before we could decide there was just one little obstacle in our way, my daughter's bones. Back in early December there was a period when the girl fell to the floor and was unable to get up on her own. Her leg had "locked" to the point that she couldn't even put her foot on the floor without being in pain. I felt her thigh and immediately knew the culprit was a tumor behind her knee that must have grown since her last operation. I could feel the hard rock and just pressing gently on it brought screams of agony to her. The tendons must have gotten caught up on it. When something like this happens there's not much that could be done. We can't bring her to a local emergency room as that would be useless. There's nothing any local doctor could do other than take x-rays and prescribe Vicodin. Her specialist is with UVA in Charlottesville. A phone call to him usually means we're in trouble. He always gets right back to us. It's always the same conversation, and it's never good. "Rest the leg, give her pain medication, if she still can't move after a couple of days prepare for the worst."
The "worst" is surgery. That's been our vacation over the last two summers. I spent my 50th birthday in the hospital praying my daughter wakes up from the anaesthesia and is not in pain anymore. The next 10 weeks was for healing. Last year's operation was supposed to be simple. Only one tumor was being removed, unlike the year before where there were over a dozen from both legs and her hand removed. Last year's simple operation developed into cellulitis which was a bitch to cure. It's not like UVA is around the corner so every time there's a problem it's on the road again.
Luckily this December outburst lasted only a couple of days. I tried healing her as best as I could to the point where at least she wasn't in pain any longer. Unfortunately I could still feel the lump when I placed the light from my hands on her leg so it wasn't a "successful healing." I try and schedule all her appointments when she has off from school. She's in all advanced classes and at Burton so if she loses any time it really sets her back. Yesterday we made the trek to UVA.
It's always funny to watch the faces on the residents who come in to give her an exam and ask questions before her doctor does. When they feel her bones you could see the looks on their faces. "Does it hurt here?" "Ouch!" "How about this one?" "Ouch!" They can't believe what they're feeling so they always send us to xray to get a better picture. After they're done that's when her doctor joins them. Yesterday's xrays showed ugly pictures. Her upper arm has a hook-shaped tumor growing out of it that they want to remove. She doesn't want it removed because she doesn't want any scar on her arms. She's already got a half-dozen on her legs which causes so many stares. She feels the "hook" can't get snagged on anything since there aren't any tendons or ligaments there and it only hurts her if someone grabs her arm. The leg is another story.
There are two tumors causing the problem. One of them the doctor knew about last year but couldn't get to from where the incision was made. He was afraid to remove it because so many nerves were wrapped around it and he didn't want to chance paralysis. Now it's grown. Above it is a sessile shaped one that needs to go as well. This time he would have to come in from the outside of her leg and not enter into one of her previous scars in order to get them. I asked about the nerve damage and he said he couldn't guarantee there wouldn't be any but coming in from the other side would allow him more leeway. He wants her to get a CT a week before she's scheduled so that he could get a better view.
Last year my daughter had lamented that if she had known her recovery was going to be so bad she wouldn't have opted for any surgery so I asked her what she wanted to do about these "bumps." When her doctor had said that doing something out of the ordinary could have caused her recent pain, my daughter laughed and said, "yeah, I guess putting one leg in front of the other walking is out of the ordinary. I don't have any choice. I can't sit on a chair and sometimes I can't walk. They need to go."
So it shall be. We'll do it again this summer. Can you imagine she actually apologized to us? I apologize to her. She's the one who's lived all these years in pain and suffered. She's the one that's missed too many summers. She's the one that has to listen to the comments and ignore the stares. She's the rag doll, as she calls herself. And yet, she's never lamented, "Why me?" or shown the least bit of anger at the world, even in her teen aged years. Instead she says how lucky she is... "It's better I get them now so "the nutty professor" could remove them. Once I'm 18 I'm no longer considered pediatric and he won't be able to help me. It's really lucky I have them now."
Yeah, real lucky. And if she's really, really lucky she'll heal quick enough so that I could take her to a beach at the end of the summer. I'm not throwing those brochures away just yet. It'll give her, and me, something to look forward to...