We went to the doctor Friday with many, many questions, and got several answers. I think the most frightening thing is the number of times I heard the phrase, "we just don't know" from our doctor. This isn't a knock against our staff at all, it's just a simple fact that science in general doesn't necessarily know a whole lot about the disease. They know what treatments have been successful in the past on 90% of the girls tested that were between the ages of 2 and 10, and that's what our protocol is based on. Your heart just goes out to the other 10% and you hope and pray your child isn't part of them. I guess an equivalent feeling would be getting into a 747 with me as a pilot. Yeah I know a lot about flight theory, how most of the systems operate, and have even solo'd before…in a small 2 seater. Heck, 2 of my greatest friends and roommates in college are both pilots. I'm pretty sure I could take off…and fly it from point a to b, but that landing…whoa nelly. C'mon avionics!
Ok, so I'll pass on what info I was given and can remember. Leukemia is a blood disease, affecting the bone marrow. They don't know why, but a cell just goes haywire and starts taking up space within your bone marrow. This doesn't allow for the creation of new white (defense) or red (oxygen) blood cells, or platelettes (bruising/clotting). When we took her in July 13th, her bone marrow was 95% Leukemia (or blastic is the phrase they use). Also, the resting sample they took of her spinal fluid initially was clear. The second one they took had what we were told was trace amounts of leukemia in it, but apparently that can happen as they pull the needle out.
When we left the hospital, they did not have enough cells in the sample to make it a true sample, however, of the cells they did have, they saw no leukemia in her bone marrow or her spinal fluid. Yay God! Then last week, we got some paperwork for our next step in the protocol. Various things were highlighted that didn't jive with the verbal descriptions we were given. And so, we had questions.
Apparently her spinal fluid did have rather large amounts of leukemia in it originally, which put her in a higher risk situation. They don't know yet if it has travelled to her brain. I believe that's what one of friday's tests will show. Another question we had was how she's doing. For all of the chemo she's gotten, they've also taken samples of spinal fluid, and the occasional bone marrow test. Those are showing no leukemia. Yay she's cured! Hold on, not so fast. Those are samples of say 10,000 cells. If they were to expand that view out to 100,000, and look at it more in depth, they would still see the leukemia. The goal of this is to put her in remission, and hopefully keep her there for an extended period of time. The longer she stays in remission, the less likely she is of having a relapse. Again, that's not fact, that's what has worked in 90% of girls between the ages of 2 and 10. They really aren't sure why, they just know that it works in a large percentage of cases. It's a sad view of our society today, but I got the feeling the doctor was choosing her words very carefully to avoid any sort of lawsuit. WHEN we're through with our 2.5 years, we'll be going back and getting tested every month for the first year, then I think annual check ups, for who knows how long.
There are, of course, risks with this treatment plan that we are on. After doing some research, we found out that a lot of the chemotherapies can cause secondary cancers, both blood and tumors. They didn't tell us that. Luckily, Peyton is not on one of the medications that have been known to have this rather nasty side effect. The medication that she's on has been known to cause brain tumors in I think she said 2% of the cases. Other side effects were potential slight IQ drops, potential loss of certain fine motor skills, etc. Once again, you play the percentages and hope it works out favorably.
A very good friend brought up the idea of using some natural supplements and herbs to help out in our situation. So I asked the doctor about using certain vitamins or whatnot to help her body build up its immune system as she's coming off the steroids. The doctor was not at all opposed to that, but she said there were certain herbs that they did know did not work. So that's my research plan this week, reading up on the various vitamins and what they are for. I assured the doctor that I would bring a list to them of what I was thinking and why that was the case, BEFORE giving her anything. I don't want to play Dr. Frankenstein with my daughter, but I do want to help her beat this thing and live.
You know in all this, the Lord is with us. He's with me as I have to have an emotional breakdown on the way to work in the morning. He's with me when an old friend gives a call just to gab. He's with me when my daughter is screaming at the top of her lungs for the world to stop doing this to her. He's with me when my daughter, who always sat on my lap when she was hurt or scared, doesn't even want me in the room with her while she's watching TV. Somewhere I read or heard that the Lord doesn't push you any harder than you can take. It's just that you don't know how much you really CAN take. In this terrible, terrible time for my family, there are still rays of light and hope, sometimes dim at first. Sometimes, they are barely a pinprick in the night sky. Every time I turn around, someone is doing something extremely nice and unexpected for my family. They know as well as we do that these things won't cure my daughter. But they keep doing them, and for that we are extremely thankful. Those little things help keep us going on some of the rougher days.
All of you as readers are helping to see us through this too. When I need a pick me up, I'll browse through the guestbook, or look at the number of web hits we've gotten. Some of the names I know and some I don't know. Some I haven't heard from in a long time, and they all give me a bit of hope on the more difficult days.
Peter
