This afternoon, I left work at about 3pm and picked the kids up at home for a drive up to Pinterest, where Brian works. They were hosting a Halloween party, where the kids could carve pumpkins, get their faces painted, and generally have fun. Zander was dressed as a pirate and Aila as a superhero with a cape. Declan was dressed as the third child, in sweats and a hand-me-down Gap shirt of Zander's. Sorry, Dec! It took forever to drive the 25 miles up there because of accident after accident along the way, but we finally made it. Compared with the austere yuckiness of my office building, Pinterest's headquarters are like an amusement park. Music was blasting. Help yourself to a soda or a cookie! A large lego wall is right at the main entrance.
Zander got a giant pirate painted on his face, and Declan insisted that we get him helping after helping of macaroni and cheese and spaghetti. Zander carved pumpkins, played with legoes, and ran frenetically around the building (well, until he accidentally crashed straight into a low railing and screamed in dismay). Aila calmly had Dad carve a big pumpkin, then played legoes with Mom, before she insisted on eating a ton of spaghetti. I will admit to walking around this latest Pinterest dance party feeling like I was wearing a giant "my kid has cancer" shirt, but my guess is that most people weren't paying any attention to us. At one point, Brian and I talked about how we were "pretending" to be normal and do normal things, which is exactly how it felt.
Last week was a really bad week. Aila was hospitalized for a total of three days with two separate admissions. Her neutrophil counts dropped to their lowest since she had been discharged from LPCH, so we had to hold off on her first chemotherapy infusion in the next round of treatment. She was unhappy, distressed, and in pain. Her doctors said that she had gastroparesis, a fancy term that means that her stomach muscles were kind of paralyzed, probably from the chemotherapy drug vincristine, which she is about to get in full force again for the next month. We were feeling hopeless. Then, with the Herculean help of laxatives (yes, many diferent kinds) and erythroymycin (to jumpstart her stomach muscles), she pooped on her own for the first time in 15 days last Sunday. And she began to smile and laugh. I cried from joy when she pooped, and we had a good week. She went to the park with her grandfather, played with her brothers, took a bath with Mom at night, and was generally okay. Her neutrophil counts were high enough that she received her first dose of IV vincristine and IV methotrexate on Tuesday. It felt good that we were able to continue our trip down the anti-leukemia chemotherapy highway.
So we piled everyone into the 4runner tonight and drove home after Pinterest's festivities, which was a decidedly faster trip than the one up there. Brian and I tried to talk about the recent goings-on with Pinterest's stock (it split, again), but we ended up arguing, probably because we were interrupted every 25 seconds by a toddler, and probably further because we were both so tired. So we rode home in silence for the last 15 miles. When we got to the house, we both just did what needed to be done--bathing kids, feeding kids, putting clothes away. I worked for a couple hours until Aila, who was sleeping behind me in our bed, began grunting and moaning. I picked her up, and she began heaving, saying she was going to "tro up." We took her to the sink, but it wouldn't come out. Brian held her up over the sink, and I held a towel on her head. He said out loud what I had been thinking, that if we gave her the docusate sodium (a laxative she hates), she'd probably vomit. So we did, and she vomited. And heaved. And vomited. And heaved. And pooped at the same time. Next, she screamed for her binky, then for Mom, then to lay down. And now she's sleeping behind me again.
Nothing's normal. We had some fun tonight, and I'm glad. I might as well wear the shirt though, since it's our reality. Sure, we can go to a Halloween party, but cancer doesn't care. These chemo drugs are nasty, and their effects occur whenever they like. The kids had fun, and I'm very glad about that. Maybe Zander for a while will remember the lego wall and the pumpkin that he carved with Dad. Aila (and Declan) probably lived in the moment, and the moment was good. Mom will remember the two cans of Coke Zero that she drank because she was utterly exhausted. And I'll also remember seeing all the other healthy babies and toddlers with their families and thinking, with a cancer-diagnosed selfishness, how lucky they all are. Although maybe I'm off base? In college and beyond, people imbibe too much, and just wish beyond belief that they could throw up and feel better. But is it normal to fantasize about thrusting your finger down your two-year-old's throat to induce vomit, so that she might throw up and end her suffering for the night? I don't even know if it is, that's how tired I am.
Sleep has always been a terrific problem for me during times of duress in my 39 years. Falling asleep, staying asleep, waking up. However, I don't ever remember a time in my life where I've been more exhausted and depleted than I am right now. Every day, I'm painfully tired, sometimes fighting to keep my eyes open with clients and during meetings. But then every night until early in the morning, I start working and can't stop. I thought for a while that it had to do with work, but now I think it has to do with staying awake. I'm working to stay awake, so I can keep an open eye on my baby, who could need me at any minute.
I hope our family makes it through this in one piece. We have such a long, long way to go. Some people are helping...we have support, we have help, we have love. We can always, always use more. But there just is no way to truly describe her cancer's destruction or the fact that no amount of help can make some things any easier.
Someone I know calls Aila a warrior, and I agree. Continue your fight, my baby warrior. Your mother and father are right here to wash away your vomit, hold cool towels to your forehead, and lay next to you whlie you sleep.
Sweet dreams.
Comments
Angela Tana 9 years, 1 month ago
Hi Vicky,
Link | ReplyI always find myself checking your blog. I wish there was no cancer in this world and I wish that since it's here that we had much less disastrous ways to cure it. I know some close friends who have gone through the treatment and they have found some relief from some supplements recommended by NDs. I'm sure you have researched it all but I figured since you are quite possibly in a brain fog on a daily basis that I would throw it out there. I've been feeling very tired lately as well for other reasons and I started taking additional supplements which is helping me. (Beet powder) You've gotta do whatever you need to get through this time. I hope that when this nightmare is over that your life is uneventful and smoothe sailing!!! XOXO
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