The Good, the bad & the awesome

There was a time in my life when being right was the only thing that mattered to me. Nowadays, I am afraid to be right more often than not. How ironic. Well, yesterday was no exception.

After a year. YES, a whole year, I managed to get D back to see his eye specialist in Bakersfield. We were supposed to go back last January but I had my DIEP flap surgery & then weekly trips to UCLA for post-op follow-ups. Then implant expansion visits - all of which had to take place on Thursdays. Thursdays are the only days that Dr. Tawansy (D's specialist) does clinics in Bakersfield). You can see why it just never worked out. Plus D's eyes seemed so quiet and weren't giving him any problems... that is, until a month or so ago.

About 6 weeks ago he began pressing his left eye quite a bit and pulling on his eye lashes. The eye pressing is pretty common for vision impaired kids. Press on your own eyes. Go ahead. Do it right now. See the spots and lights? Well blind kids can see them too. And that's the only thing they can see. So you can understand the attraction in eye pressing for them. It can become almost like a masturbation thing for them. (NOTE: this is my personal take on things not the official party line). So I wasn't so much worried about the eye poking / pressing but I had also noticed that his left eye had seemed to have shrunk a bit, quite a bit it by my estimation.

One of the major characteristics of Norrie's Disease is small eyes. But at times I think I can see beyond the corner of D's eyelid to behind his eye. I'm no expert here, but I don't really think you're supposed to be able to do that. Think of your eyes as place holders for your eye sockets. If your eyes are too small the eye sockets don't grow properly and thus your skull can grow improperly also. Eventually, your skull can become misshapen causing all sorts of other issues. One of the things they do to stop this is make schleral shells. So I made it a priority to take him in.

Well, thankfully, I was wrong. His eyes (both of them, though the left a bit more than the right) have shrunk all right. Not near as much as I feared. And they are still quiet. By "quiet" Dr. Tawansy means that the pressure in his eyes caused from scar tissue built up inside is not high. There is no inflamation or anything else wrong. He is not concerned with his sockets so there is no reason for us to consider shells, though the Dr did say they may keep his fingers out of his eyes. And he took D off his meds for glaucoma. Ha! All in all, a very, very good appointment. And best of all, Dr. Tawansy is very interested in going to the Norrie's conference in Boston in July 08. Yeah!

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In other not so good news, I found out last night that an acquaintance of mine has had a recurrence of her breast cancer. She is the first person I've personally known with breast cancer. I remember her losing her hair (she's a hairdresser - how tortuous for her), having 2 lumpectomies because they didn't get it all the first time and finally a mastectomy for the same reason. She had the TRAM Flap reconstruction surgery which went very badly for her and her entire abdomen herniated. But since then, maybe 3 years ago, she's been well.

In December she was complaining of needing glasses so she made an appointment with the eye doctor who found a tumor behind her eye. It was metastasized breast cancer. They did radiation and chemo and now the tumor is gone. But as we know... once cancer metastasizes it is incurable. I feel sick for her. She was like me. She was open about her cancer. She would talk freely about it. Now, she doesn't speak of it at all. She is trying to come to grips with the knowledge that she will die with this disease and from it. What savings she has will be spent on her treatment of it and her healthy days will be spent waiting for it's return. She has told her doctors that she does not want to know how much time they think she has. She only wants to know what treatments they think she needs and what the side effects will be. Then she will decide whether or not she will do it. That is very much what I would do, I think.

She is living my biggest fear. What do you say to people when you have metastatic disease and they ask how your treatment is going? Do you say something like, "fine... today." or "good. But I'll still die." No wonder she doesn't want to talk about it. What is there really to say? At that point isn't it best to just live your life for every moment you can suck out of it?

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Enough depression. Better news. Here's a focalin update on B. Today I took him to school. I was still talking to another mom outside when his class walked by in a line. He was so focused on what he was doing (paying attention to the teacher !!!) that he didn't even see me standing 2 feet from him. What a different child he is now. He is incredible!