July 19, 2016, 2:15 a.m.
I'm not sure that this is appropriate material for the blog, as it's not very happy. Aila went to camp last week on Tuesday and part of Wednesday, but then refused to go on Thursday and Friday. Why? We have absolutely no idea. My father asked the high-school-aged camp counselors, who said that all was fine until she asked for "Wampa" an hour before the end of camp on Wednesday, prompting them to call him. Zander said that a boy called her a "baby," which is entirely possible and makes my heart sink to the floor. Was it her binky? Her absence of hair? Her slow and labored gate? Could have been any of these or a host of other things.
And really, do I care if she goes to camp? She's three, after all, and attendance at the Redwood City Parks and Recreation Department camp is not critical for her overall growth and development. I suppose that Brian and I were just (unrealistically) hoping that integrating with other little kids would be no big deal, chemotherapy and all. But it was, and that's fine and really not very surprising. Sad really only for her parents, who continue to wish that we could spare her some of the ongoing agony.
Uncle Gene came to visit this last weekend, and Aila brightened. We all did. He helped us paint the ceiling and patch the wall and straighten the garage. Saturdays are always the hardest for me and Brian, given our exhaustion from the work week and three kids in need of attention. But Gene stayed with us and didn't judge. When he left on Sunday, we felt sad, wishing he and his family lived closer, wishing that we could keep Aila smiling. Later today, in less than twelve hours, she and I will head to UCSF for another round of general anesthesia, followed by a spinal tap for intrathecal methotrexate, followed by a vincristine infusion, followed by dexamethasone and risperidone later in the night. Then steroids (dexamethasone) for a week.
I want to write more posts that are hopeful and happy like the last one where Aila heads to camp, suggesting that things are returning to a copacetic normal. I know they're easier to read, although sometimes they take some effort to write, if I'm honest. We've pressed on and moved forward, all five of us, in our lives, our careers, our playing in the sandbox. We want nothing more than to feel like survivors. But first, Aila has to survive. And while she is amidst the process of surviving, leukemia is not yet done.
I love you, Aila. May I have the serenity and strength to remember that dexamethasone will again strip you of your sweetness and grace during the next two weeks, that it's not really you who is paranoid, weeping, and angry. That the world will forgive me for writing yet another sad post. I swear that it's not pity that we seek, not at all. I just want to tell the truth...the one lurking behind the "cure" for childhood cancer, that pervades the lives of the sweet bald kid on the St. Jude's commercial, when the camera is off and life resumes. Truth helps me survive.
Comments
There are currently no comments
New Comment