September 17, 2009 Today was Tanner’s last treatment in Interim Maintenance, the third of five phases of treatment for ALL! A milestone, for sure. My Mom and I were saying on the phone that this phase has gone quickly, I think in part, because we were on a 10-day cycle instead of a 7-day cycle, and also because Tanner has handled it so well. We now have two weeks before the next phase begins — Delayed Intensification — from the looks of it, and from everything I have heard, the hardest phase.
Tanner’s neutraphils (big, infection fighting white cells) were still up around 3,500 this time (normal is 4-10,000), which is very high for a kid on chemo. No one can explain this to us, but we’ll take it. As I suspected, her red counts have dropped. Her Hemoglobin (red cells that carry oxygen throughout your body) was a little above where they would give her a transfusion. They said she could get one, since she is experiencing symptoms of low red counts, but we decided to wait and see if her body would bring it up on it’s own. We’ll go in for counts only, no chemo, again next Thursday to check and will keep an eye out for increased paleness, fatigue, shortness of breath and headaches in the meantime. All these are signs of anemia, and while Tanner has been consistently anemic since being diagnosed (most leukemia kids will be), dropping below a certain level will necessitate a transfusion.
It was a hard day for both of us today. I think having to go to the hospital every week for these exhausting days is just getting really old. After having been such a pro about having her port accessed last week, Tanner had a mini-meltdown about it today. I stepped out in the hallway and let her favorite nurse, Carrie, handle it, which actually seemed to help. They worked it out. But, then, Dr. Mixan told us she would have a flu shot today. I know a flu shot should be no big deal to a kid who goes through what she goes through every week, but shots have always been a big traumatic experience for Tanner. Today was no different and three of us had to hold her down to get it done. Afterwards she crawled into Carrie’s lap and sobbed. She kept saying, “It’s scary… I’m scared.”
While getting her chemo, which begins making her sick to her stomach while they are still putting it in, we watched a tiny little girl, no more than two, throw up two seats down from us. From her mother’s calm reaction, it seemed a pretty normal occurrence. Tanner said she felt bad for that poor baby and knew how she felt.
I keep dreaming about Tanner’s chemo. In my dreams, I watch them hook the syringe full of chemo up to the line off of her port and slowly squeeze it in. Clear Vincristine and bright yellow Methotrexate (Tanner says it looks like pee). Over and over again. And, I wake, wondering what it feels like and how it makes her feel.
The first three months of both my pregnanacies, I was nauseated. I never threw up, but felt like I wanted to most of the time. My stomach just never felt right. I wonder sometimes if this is the way it is for her. It makes me ache to think about it. I don’t know if she feels that way all of the time, but I know that she complains about her stomach a lot, despite taking 4 different drugs daily to help. I remember how at the end of three months of constant indigestion and nausea, I felt worn down by it, like it would never end. I wonder if she feels that way, too, when she whines about it in a way that makes John and I want to tell her to “buck up.”
I woke this morning, after dreaming again about the chemo, wishing I could take some, just to see how she felt. To know how bad it hurt so I could empathize better and be a better caretaker. Tanner is a drama queen in all senses of the word; it is just a part of her huge personality and it is sometimes difficult to separate drama from real pain when you’re dealing with her. But, today, there’s no question. She just feels bad. You can feel it and you can see it on her face. Tonight, at bedtime, she asked, “You got any meds for me?” Meds, seriously. Sadly, I have to tell her no, I’ve given her all I can give. I tell her to go to sleep and she won’t feel it anymore. I leave the room with her asleep, or so I think. She is back out of her room in minutes; she has to go to the bathroom… again. She tells John, “As soon as you can give me some meds, you bring them… all night. Okay, Dad?” We promise her we will.
I wish I could take that chemo so I would know what she felt like; but even more I just wish I could take it for her… so she wouldn’t have to.
Love,
Beth
P.S. This is my public shout out to my husband, without whom I could not endure this. He is probably one of the only people that I tell when I’ve really had it, and, no matter how overwhelmed he is as well, he always comes to my rescue. Tonight, he picked up groceries on the way home so I wouldn’t have to go out tonight to do it… and brought me Ben & Jerry’s. Now, that’s a man I could still love with all my heart after 10 years. Thanks, Baby; I don’t deserve you.
