Jan. 29, 2016, 12:21 a.m.
Last night was a really, really bad night in our house. Aila was inconsolable. She screamed uncontrollably for hours, which led to the baby screaming intermittently for hours, which led to our moving Zander's mattress into our room because he was upset that Declan was screaming. I wore the Bose noise-cancelling headphones from 10pm until 9am (I could still hear everything, trust me!), when I awoke. After three consecutive days of infusions, Aila was sick, exhausted, and nauseous. Through all my pregnancies, I used to say to Brian (in an effort to describe the exhaustion) that I was bone weary. And after three consecutive days of infusions, Brian and I were bone weary, I think. Then today, we finished the fourth infusion and felt a tiny bit of relief, since the next infusion was not scheduled until Monday. I worked all day and was at my Dad's picking up the boys at about 8:30pm when Brian called, saying that she had developed a fever (100.7) a few hours after they had arrived home. She was screaming in the background from a pain "in her butt," she said. She's had a ton of vaginal infections following IV antibiotics, but all has seemed clear right now. Yet something was either hurting or itching or burning.
So I brought the boys home. Deep down, we knew that someone would be taking her to the ER tonight, and we moved with both purpose but an eerie poise. We calmly talked about our options (really only one--if fever continued, go to the hospital) and calmly put Declan to bed. We told Zander that he could have a snack (he had given Wampa a hard time about his choice of spaghetti sauce, opting to skip dinner) and that Daddy would likely be taking Sissy to the hospital. He calmly said "okay," ate two small slices of Whole Foods pizza, showed me his Valentine's Bag (again, my sweet boy) from Aunt Chris and Uncle Gerry, and let me tuck him into his bed. I told him that he could come sleep with me if he woke up and was scared. We rolled into the living room our huge hospital bag, and I made fun of Brian for his "light packing." I added some crayons and Aila's stuffed monkey while Brian had something to eat. She feverishly slept on our bed as we prepared. We calmly discussed the plan for the next day, the likelihood that they'd keep her for at least two but likely many days, given her age and her impending neutropenia. Brian loaded the car and turned it on while I lay next to her, hugging her since I had to say goodbye for the night again. When all was ready, I gently picked her up, brought her to the car, and kissed her and Brian goodbye. Almost an hour and a half later, they have accessed her port.
Bone weary, with no way to rest, that's what I am. I would have never understood what this meant before being a mother to Aila right now, as her little body is at war with leukemia and chemotherapy. But now I absolutely do, because who really can possibly rest when someone they love is suffering so much. And it kills me every day that my own needs as a human being are even "a thing," and I know Brian feels similarly. My needs get in the way.
So I sit at my desk writing this blog, waiting for text updates from Brian as he and Aila navigate the UCSF Benioff ER, a very familiar place at this point. I keep turning around, thinking that Aila made a noise or Brian is picking at his fingernails on the bed behind me (I usually yell at him for this). But no one is there.
Sometimes, days or months later, I reread some of my old posts, and I think about how "dramatic" they sound. I feel kind of guilty and say to myself, "come on, this sounds so sensational, even theatrical at times, how self-involved." And then I remember, I'm not exaggerating a bit. In fact, there is so much more that I have not shared here. But then my thoughts are countered by the voice that says, "maybe this is normal? similar to what other famililes experience?" But alas, other families I know with kids this age are worried about what preschools they will attend and whether they are learning their numbers and letters in due time.
Acute lymphoblastic leukemia might be the "good" kind of pediatric cancer to get, if you're in the market for pediatric cancer. But it's a horror show just the same. Come home soon, Brian Christopher and Aila Muriel. We miss you already.
Comments
Chris Cosgrove 8 years, 10 months ago
We are so with you, Vic. Hang in there. You're right, you're not dramatic. Keep writing. We love you. This will come to an end. She will win!!
Link | ReplyLove, Chris
Angela Tana 8 years, 10 months ago
Sounds like you are beyond bone weary. It'll be wonderful for the day your daughter reads your blog and says 'wait mom I had cancer?'
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