August 18, 2009 Well, it finally happened. The “good counts” bubble we were living in popped. Tanner’s neutraphils (big infection fighting white cells) were down to 610 from 1500 last clinic visit. Somewhere around 4,000 is normal, and 500 or under is considered neutrapenic, which means you almost have no ability to fight infection. So, 610 is pretty low. They were unable to give her methotrexate (one of the two chemos she is currently taking) today since she was under 750. They were supposed to be increasing her dose of methotrexate every 10 days during this phase until she could no longer tolerate it. So, now they realize that Tanner is very sensitive to this chemo and they will have to adjust their dosages for her. She got Vincristine today, since it doesn’t really affect counts much, but will wait until next visit to see if her counts return to an acceptable level to start the Methotrexate again. They will give her a lower dose this time and go from there.

This sounds really bad, but actually isn’t. I mean, it stinks for the next 10 days since we will be more severely limited about going out (no more trips to Target or the grocery). But, it means that since her body and her leukemia are extra sensitive to the methotrexate, she will receive less of this drug for the remainder of her treatment. The doctors believe it will be no less effective, she just requires less than most people to do the job. This is a chemo that will be part of her treatment plan for the duration, so less chemicals in her little body is a good thing.

Of course, the low counts just had to coincide with Jake getting a cough and runny nose… of course. Have you ever tried to keep a six-year-old and a two-year-old away from each other when they have no one else to play with? After today, I can say, neither have I. I finally settled for them sitting at opposite ends of the sofa when they were playing Wii or watching TV. The rest I’m just trying to live with.

Her red counts are going strong, though, so she still has lots of energy and feels pretty good. The Vincristine, however, is definitely making itself known. She is getting slower and slower up the steps, the rash on her hands and feet is back and her hair is starting to fall out again.

We’ve had a busy couple of days. Her homebound teacher came for the first time on Saturday for an hour-and-a-half. The day before, Tanner, Jake and I went to Target to buy school supplies. We took the supply list, just like we were going to attend school and bought everything on that list — eight large glue sticks, 3 boxes of 24 crayons, a 6-inch ruler, etc. I think that made Tanner feel like she was ready for school. Then, we went home and made a school room in my office. We put in a table and chairs for both Tanner and the teacher, posted a big map on the wall, and set up all her supplies. She had a lot of fun putting it together and played in it for a long time afterward. We’re going to keep decorating it until it looks like a real school room.

Tanner and Mrs. O'Hara at work

Tonight I went to a parents meeting with Tanner’s teacher at school. We went over all the curriculum they would be covering and I almost cried (I didn‘t cry there; that would have been embarrassing. I cried at home where it is acceptable!). She would love this class and the many fun things they are doing. Tanner loves to belong to something and to be a part of the team (well, she actually likes to lead the team, but someone has to be in charge). Then, I started thinking, how in the world will she be able to keep up with just 3 hours a week of tutoring plus homework? It’s unbelievable what a first-grader learns these days! I think we were just learning how to sound out words, if that, when I went. Good grief, I had to think hard on some of the questions in their math workbook! But, the school is being so awesome about looking for ways for her to connect. She actually has a desk and a cubby with her name on it, so the kids know she’s coming and is part of the class. I’m going to try to take Tanner to see the classroom this week and she will love that.

Tonight, when John came home, he burst in the door talking about ducks down the street in our neighborhood. Ducks? We don’t have a pond here. The neighborhood backs up to the Harpeth River, but these ducks were walking down the street a good ways from the river. They grabbed bread from the fridge and headed down the street to feed them. Sure enough, these ducks seemed familiar with the bread scene and let them get fairly close before they finally flew away. It is so like my husband to run down the street in his suit, barefooted kids and all, to seize an opportunity and make the most of it.

Who would have ever thought you would see ducks just walking down the street in our waterless neighborhood? Who would have thought our daughter could get a disease that only strikes .004% of U.S. children each year? Strange things happen. Maybe it’s what you do with them that is most important.

Love,
Beth