October 18, 2009 Poor Tanner hasn’t gotten up off the couch for two days now… the steroids do this to her… she just feels cruddy and is sullen and whiny. She looks so pale and sick, it reminds me of the first month after she was diagnosed. She keeps asking me when she is going to feel better, and unfortunately, I think it will be 3 more days of steroids plus a couple of days for them to wear off.
The cumulative effect of the doxorubicin seems to have set in as well. She has painful blisters on her lip and her hair has begun to fall out again. She’s pitiful and it’s hard to watch, especially knowing that she’s going to feel worse in a couple of weeks.
This Thursday is just a counts day, unless she needs a transfusion (apparently, they expect her counts to have fallen significantly). It’s a week off designed for counts recovery before starting the second half of DI, which is purported to be the worst 4 weeks of the whole 2 ½ year treatment. Two days before Halloween, Tanner will spend all day at clinic. She’ll have to be put under for a spinal with methotrexate chemo. Then, she’ll have to be hydrated for several hours before she can receive an hour-long infusion of a new chemo called cyclophosphamide. Then she has to be hydrated for several hours afterwards. She will also start an oral chemo called TG that she takes for two weeks. She also gets another new chemo called ARAC. We go home with her port still accessed (like going home with an IV line in your arm) and we give her the ARAC through her port every day for five days. It’s a brutal, inconceivable day of chemo that should pretty much mess up Halloween. I figure if we did Light the Night in a wagon, we can trick-or-treat in a wagon, too.
So, it’s hard to comfort your hurting child when you know what’s coming around the corner. We’ve explained to her that this is the hard part and that we have to just dig deep and get through it.
Moore Elementary School has been our bright spot in the last few days. Yesterday, Tanner’s at home teacher, Mrs. O’Hara, brought a book that a second grade class made for Tanner. They made her their star of the week and each child drew a picture and wrote an entry about why Tanner is their star. They obviously had read the blog and looked at the pictures because they wrote about her doing hip-hop and ballet and told her that she is pretty and a great reader. This stuff is priceless and I know we will get it out and read it when times get tough. The school has also shown a Charlie Brown movie to some of the classes about a little girl with leukemia. They brought it for us to watch; I’m going to look at it tonight and decide whether it would be a good thing or too close to home. We so appreciate them wrapping their arms around Tanner this way. She really loves it.
In this journey, we have found, there are some times when it is easier than others to laugh and find joy in life. In the times when it is not so easy, I try to find humor wherever I can. So, I’ll share with you what has kept my sense of humor today… Tanner’s steroid-inspired appetite. While I have written this post, I have stopped twice to make food for her… once to reheat tater tots and once to make a pizza which she asked me to start making while she was eating the tots so it would be ready as soon as she was done. Too funny!
Please pray for us… I woke up this morning with a sore throat and am trying to keep my distance from Tanner. No germs, no germs, no germs.