I've been pretty quiet on the blog, I guess because I'm feeling pretty quiet myself. I have had a hard week. We are on countdown to one more year of chemo if all goes well. Next year at this time, she will have just received her last dose of chemotherapy. What a Christmas present. I can't wait. I know we can get through this year, I just know it. At the same time it sounds so long. Brinley gets a couple weeks to feel good and then we start all over again. It feels so repetitive, like we are in a boxing match and keep getting knocked down. We finally get back up only to get knocked down again. I am tired of Brinley being knocked down. All of us really. Especially when I know that it is coming. Brinley doesn't know when the blow is coming. It is tomorrow. I will drive to clinic tomorrow to knock her down again. I know, I know, this is what is saving her life. Still, I want to take her and run sometimes so she doesn't have to go through ANY more. We all know where that would leave us, so I am between a rock and a hard place.
The other day I heard her say to someone in casual conversation "I get really sick sometimes, but not today." I am trying so hard to follow her example and just go day to day. I sure appreciate the good days, but it is hard to not be sad knowing that soon she will have to feel sick again. I have been watching her play and laugh and run around and I can't help but feel sad. I'm not a big crier, but my eyes seem to fill up pretty easily lately. By the time Brinley is through with treatment she will have spent more than half of her life on chemo. That is what made me so sad about what she said the other day, because this is her normal. It is normal to wake up every night and chew up a chemo pill. It is normal to chew up nasty steroids and just say "is this the yucky one? Can I have some water?" It is normal to have a big "bumpie" sticking out of her ribs that gets stuck every couple weeks. It is normal to go to the children's hospital where they all know her by name. This is her normal, and it shouldn't be for a 3 year old. I can't wait until January when I can go to Washington D.C. and represent all the kids in Utah who have this life as their normal.
Aside from MY stuff, Brinley is actually doing really well. Her counts rebounded nicely now that she is off the septra, so that must have been the culprit. She has been bumped up to 50% for one of her oral chemo's, 6MP, and we will see how her counts look tomorrow to see if she can go up to 50% with the methotrexate also. Her hair is getting so long it is in her eyes now, but she refuses to let me trim it. She said it will hurt, I think she remembers when we had to shave her head because her hair was falling out in clumps. Anyhow, whatever the reason, I told her she never had to cut her hair again if she didn't want to, I may regret that someday! So we'll try to manage the bangs until they are grown out. She is really looking good and healthy and we have heard that from quite a few people, so I know it's not just my imagination!
We are all so excited for Christmas. Those of you who know me know that I bake like a madwoman in December, I would bake something every day if I could. So we are cookie decorating and party planning and all kinds of fun stuff. I keep having flashbacks of last year at this time. Brinley was learning to walk all over again. I look at her now and she has come so far from where she was last year. She is running and jumping. Things are better. And next year....they will be better yet! And Brinley is still here with us, and we are so very grateful for that and try not to take one day for granted.
Please say a prayer for Brinley. Tomorrow is an LP and I am more nervous than normal for some reason. I have a restless feeling, maybe because the last LP she had she was so sick. Pray that all is well in her spinal fluid, and that those cancer cells continue to stay away. I don't like feeling this nervous and could use some prayers too.
Sorry for the lack of update for so long, Brinley really is feeling well, and I, well, I'm feeling weary but I'll get through it and be back to my lovely fun self soon enough! Hooray for the forgiving family that I have! Thanks for visiting and listening to my ramblings and I hope you are having a wonderful holiday season so far!!!
Posted by Kristin at 1:25 PM
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