October 21, 2009 Tanner finished this pulse of steroids tonight! Yay! No more until Long Term Maintenance. It is my understanding that steroids affect the kids in all different ways… some get hyper, some get really belligerent, some get super sad. Tanner acts as if she has been run over by a truck. She is just limp— physically and emotionally. Today, I was helping her get to the bathroom and I noticed she didn’t grip my hand at all, she just let it lay in mine… limp.

I am feeling better today. The antibiotics kicked in and I was even able to take off my mask. My friend Beth invited us over this morning to hang out at her house with mutual friend Anna Lynn and her daughter Elise while the two earth mommas were making applesauce (no one even suggested that I participate in that!). It was a great idea because it gave me the opportunity to wear Jake out running on Beth’s acre and a half while Tanner could lie on the couch. Tanner really wanted to go, even though she felt so bad. I carried her to the car and she slept most of the way there. When we got there, I carried her in the house and put her down in a big, comfy chair and she never moved until we left. Just sat in the chair and watched TV and spoke when she was spoken to. Poor thing. Jake did get the expected exercise looking for the geese that were not at the pond and jumping over goose poop (his idea, not mine). Tanner got a change of scenery, but she was wiped out when we left.

Beth and her husband Glenn came over later and made us some yummy shrimp scampi and ate with us. It was a nice day, despite the fact that Tanner felt so lousy.

Now, we just have to wait until the steroids get out of her system. She started to get a stuffy nose and is coughing tonight, so I’m hoping she’s not getting sick. She said it was hard to breathe, which could either mean her lungs have some fluid in them or she could have low hemoglobin, which carries oxygen in your blood.

She is also losing hair by the fistful. At this rate, she may not have any hair by next week. I must have combed big piles of dead hair off of her 7 or 8 times today… it’s heartbreaking. She doesn’t seem bothered by it, but she’s so numb from the steroids, I don’t know if that’s a true reaction or not. I pulled a big hunk off her back today and put it in my jewelry box so later, when she is bald and missing her hair, we can pull it out and remember how beautiful it will be when it grows back.

This is definitely the most tenuous and stressful phase of her treatment besides the first month after her diagnosis. It is every bit as difficult as we imagined it could be. I am worried constantly. Does she look anemic? Is she getting sick? What will this next round of chemo do to her? Will she need a transfusion? How will she handle losing her hair? Will she be able to trick-or-treat? Etc., etc., etc. It’s exhausting. Oddly enough, I’m not normally a “worrier.” But, you would have to be dead not to worry. I’m trying to just look ahead one day at a time… that’s all I can really count on.

Tomorrow is Clinic Day. We’re just going in for counts, so it should be quick unless she needs a transfusion, and then it will be really long (see what I mean by not being able to count on anything?). Hopefully, she beats the sniffles and doesn’t wake up sick. They told us she would likely be in the hospital 2 or 3 times during DI, but surely they didn’t mean all in the first month?

Love,
Beth