Thursday, December 2, 2010

Finally, Some Plans!

Last week I agreed to have Mason put in a study specifically for his type of tumor. The study is testing if whether or not a lower dose of radiation (18 Gy) is as effective as the current standard dose (24 Gy) of radiation. If so, there is a much lower chance of side effects. The risk is that with a lower dose, there is a higher chance of the tumor coming back. The study has been going on since 2003, so I feel pretty confident that since it is still going 7 years later, that there must be some improvement or good results to keep it going. That's not the only reason I agreed, but it is something that helped make the decision.

Well, I finally heard back from the Radiation oncologist today, and he told me that Mason was randomized into the study group who will get the lower dose of radiation. I feel happy, knowing that there will be less side effects to worry about (his poor brain has had enough!), but I'm also crazy-scared that I've signed his death warrant by agreeing to this. What if he's the ONE kid that the lower dose doesn't work for? But I don't want to start thinking down that road, and that's not what this post is about anyway. It's about his appointment tomorrow.

It will be the planning/questions/answers appointment, and he will also have the simulation done.

The simulation is a CT scan that they do to get a picture of the tumor, while getting Mason into a position and marking him so that he will be in the exact same position for all 30 radiation treatments he'll have. They will have to create an iron mesh mask specifically for him, so that his head will always be in the same position (like a fencing mask, only it will be formed to his face). And although I haven't been told this by the doctor yet, from what I have read, they will have to give him permanent tattoos to mark spots on his body, so he will be perfectly lined up with the machine each time. My hope is that they don't have to do that on little kids like Mason, since I have a problem with him being tattooed. ...but I'll agree to whatever it takes to get rid of this ugly little tumor. Everywhere I have read says they are pretty tiny, though, and hard to find if you don't know what they are.

I wanted to know what to expect tomorrow, so I did some searching and found a blog post from a man named Mark, who so conveniently posted pictures of his radiation simulation. He had a tumor as well, so I think it is pretty close to what I can expect to happen with Mason tomorrow, although he'll be asleep for it all, and not awake like this guy was. You can see the post HERE. And since the tumor was in the back of Mason's brain, he'll be laying on his stomach for all of his treatments, too.

And now for some purely happy news:

Mason went to his first outpatient physical therapy appointment today, and had a blast! He walked away saying: "I love this doctor! It's fun!" It was definitely good for him to see that not all doctors are "scary," or have to poke him or give him medicine. That realization was therapy all by itself.

The PT was impressed with how well he was walking and moving, and kept commenting on how fantastic he looked. I think that after reading the discharge notes from the hospital, he expected a boy who could barely walk. But not so with my Mason! :) So instead of walking, he concentrated on working with Mason to get more movement in his neck, and then did a few exercises with his trunk area and thighs, since it they were a little bit stiff.

The ride through space on the rocking rocket that had Mason laughing and laughing:

The toy that got Mason to finally move his neck:

The cutest sit-ups ever:

More updates tomorrow!

1 comment:

  1. That doctor looks awesome! I love doctors who you know just love their job and are passionate about what they do. Thanks for the updates Pene. We continue to keep you and Mason in our prayers! Love ya!