Oct. 13, 2015, 1:47 a.m.
I always feel an overwhelming need to post something positive when I post to Facebook. I imagine that I'm not alone with this sentiment. The problem I have with this is that it shortsightedly spotlights positive sentiment (or negative events respun with a positive flavor) as the only ways which humans are able to connect with one another. I understand that we don't all want to sit around and have a "Gripebook," where we talk about the horrible and painful events that we have experienced in our lives. But I wish we could have more of a neutral experience, where good and bad and everything in between could exist together. At least that's my experience of the world these days.
I bring this up primarly because I feel a need to either be extremely positive or extremely and dramatically negative when talking about Aila's ALL and cancer care. I don't know where this feeling comes from, but it comes just the same. It often leads me to skip writing, because I'm afraid what I'm writing about isn't extreme enough to warrant posting. But, the reality is, cancer is filled with a ton of mundane details...that are very important.
Tomorrow, Aila was scheduled to begin the next phase of her chemotherapy (dubbed Interim Maintenance I, which is an unusually complicated name for another version of the same intense medications). I mentioned in the last post that she'd begun vomiting, and this has kept up for most of the past week. We ended up back in the ER last Friday, where they determined that she was constipated beyond belief, and that this was causing her to throw up (i.e., there was no way for the food to go down, so instead it was coming up.). Her oncologist gave the ER docs permission to do an enema (yep, you read that correctly), and after some time, she pooped and they let us go home. But on Saturday, she ate very little and awoke from a dead sleep to vomit that night. After the same thing happened yesterday, I emailed our nurse practiioner at 3am yesterday morning, asking whether this was normal. She hadn't pooped since the enema. She wrote back pretty quickly, saying no, it wasn't normal. I brought her to the UCSF Oncology Clinic today, and she was admitted to the hospital. They're concerned about not starting the next chemotherapy drug, vincristine, on time. And apparently they can't begin it if she is not on a good "bowel regimen."
Tonight, we're split again. Brian is at UCSF with Aila. I'm home with Zander and Declan. A post all its own will soon be written about my 68-year-old father, but suffice it to say that he has really been the glue that has allowed any of this to happen. This was always one of the most amazing things about my parents...so reliable, such overwhelming support. As their child, it did often come at a very high emotional cost...so I am often on guard with my Dad. But I love him and admire him for his kindness, generosity, and unwavering love of ME and all things related to me--my husband, my children, my puppy--and I only hope that someday he understands that THIS has been his contribution to the world. I hope someday he loves himself somewhere close to the amount that we love him. But, in any case, today he stayed with Declan and Zander while I drove Aila to UCSF, then later from UCSF to Stanford, where I worked for a few hours before coming home. He was here for us all day, even as we realized that she would have to go to the hospital and stay for a night or two.
In the hospital, they have draped an "NG" tube down her nose and into her GI system, in order to drip a horrific amount of golytely into her system. Goal is to clean her out, like a little 2.5-year-old machine. Get her emptied out so that she can start a fresh round of chemo and a new round of anti-constipation meds...with the hope that she will poop with some regularity in spite of the constipating chemotherapy that she is receiving. As of 1am this morning, she had vomited up the first 1-2 hours of golytely that dripped into her GI system, dislodging the NG tube at the same time. It was reinserted, and now it's dripping again.
So to swing this back around to the beginning of this post, where I felt like I needed to say something positive. Well, I can. Aila is simply amazing. Truly amazing. Yesterday, she let me hold her hands and help her struggle up a jungle gym at the park with wobbly limbs. She smiled at me about 100 times. She curled up against me while she slept later that night, as she does now every night. When she does this, I feel that I am the most amazing mother in the world. She alone makes me feel that way.
But then, she eats about 50 calories during the day. And she barely drinks anything. And then she wakes up from a dead sleep intent on projectile vomiting. And it's not happy. It's not hopeful. It's nowhere near Facebook material. We're terrified. She's terrified. We wonder whether this is ever going to calm down or settle down into some kind of rhythm, or whether it will continue to test our strength as humans, as parents, and as partners until she is cured...years down the road.
Today, tonight, the fight is about poop. So poop, my baby girl. Poop with all your might.
We love you so enormously,
Mom and Dad
Comments
Shanan Noel (Mahoney) 9 years, 1 month ago
Vicky, I think you should post whatever you want whether it's trivial, bad news, good news, etc. You need an outlet for everything you are feeling an we all read your blog because we care. You're an amazing mom. I don't think every parent can find the strength to deal with your every day life as it is now. Hold onto that feeling that your daughter makes you feel an know that you are amazing. I was in awe of you when we went to school together and I am in awe of you now. Your daughter an all of your family are in my thoughts 💜
Link | ReplyCyndi Durden 9 years, 1 month ago
Victoria
Link | ReplyI think of you so often.. You are truly a strong and unique person. You and your family are on my thoughts to bring you positive healing energy to get you and your sweet baby thru this time In your life. I wish you comfort and love each and everyday.. Kids are amazing.. Difficult at times as you know but they are your everything. So glad you were in my life.. Hugs Cyndi
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