Wednesday, February 6, 2008

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.

4 comments:

Miller's said...

Well sorry to hear about your night. I know the steriods are a kicker! Its crazy that it can mess your body up as mcuh as it does!? I am glad that she is getting some good news and all. I think i would do the same treatment plan that you said. I would hate to see this nasty stuff come back in a few yrs and have to start from square one! Well we will keep praying for your family, keep your chin up the sun is right around the corner... My oldest son Michael goes to a private Christian School and Katie is on the prayer chain there at school so they pray for her everyday before school at lunch and before they go home!

Heather said...

Hey there,
Just read the update and sorry to hear she and you had a rough night. Kyler was up early today again drawing another rainbow for Katie as he did the day before. He begs me to go see her, just to see if my story changes I think!! Thinking of you and hope your day is better than the night... put some Dora in and maybe you can take a nap!
Talk to you later. Love you, Auntie Heather

Anonymous said...

Hi all
I am really sorry you had a long night. I wish I could take any pain from her little body.I hope her night goes much better.
Love you anut michelle

Anonymous said...

Hi All, Such a trial!
Sorry to here about these hard times. But the day will come when you can look back and it will be all over and you will say that was not as bad now. Because look where we are.
Sorry I have not written but I have been thinking of you. It is a rough road.
Lots of Love
Roxy