A Long Night

Katie decided that sleep was not as important as food last night, and she kept us up most of the night asking for and then demanding food every hour on the hour. I hate steroids. The steroids make her hungry around the clock, and now that she is starting to feel better and have more energy more of the time, she wants to act on that hunger more and more. My little girls is plumping up faster than a Butterball turkey. Her latest craving is for mozzarella cheese, and she can't get enough of it. She is capable of eating a pound in one day and asking for more.

Since she was up almost all night, guess where she is right now... She is in my bed, fast asleep. But, she didn't go down without arguing about whether or not she needed more cheese first. *sigh*

Yesterday's visit to the Clinic was good. They change the dressing on her PICC line and just did an overall check-up; no additional drugs. Then they discussed her progress with Amy and told her a little bit about her treatment plan for the future.

Apparently, the bone marrow test coming up in two weeks will confirm whether or not she is in remission. As of right now, it looks like she is in remission, but that next test will either confirm or dispute it. Remission was redefined for me yesterday. I had always believed that remission was the stage when all signs and symptoms of cancer had disappeared. The doctors at Fletcher Allen have a slightly different definition. They define remission as a reduction of the detectable disease even though some cancer is left in her body. I don't like their definition.

As for the future, we have a choice to make soon and I believe it is an easy choice. We have been participating in a study with Katie's treatment so far. The doctors have been giving her drugs and doses that are known to kill the cancer while at the same time upping the dosage or giving her additional drugs to see if they can kill it faster without making her too sick in the mean time. It seems to have worked. Now that she is in an unconfirmed remission stage, we get to choose whether we want to stay in the study or just go on to standard treatment.

The messed up chromosomes that are the cause of Katie's leukemia do not fall into the easiest to treat category, but they do not fall into a hard to treat category. They are somewhere in between. Therefor, the doctors are recommending that Katie stay on the study and get a slightly more aggressive form of chemotherapy during the next stage of the treatment plan, especially since her body was apparently able to handle higher levels of toxicity without getting really sick. We have been told that other children spend much of their time vomiting and feeling really horrible during the part of the treatment that we have almost completed.

I believe that the study has really worked out well for us, and I am all for aggressively going after every last bit of cancer in her body if her body can handle the drugs that the doctors are going to pump into it. I don't want to see this little girl have to start all over because the cancer survives and comes back again a few years down the road.