Dec. 8, 2015, 11:39 p.m.
Today was a date that is marked by two different things in my life. First, it's my father's birthday. This year he is is 69, and it's his first birthday on the planet without my mother. December 8th is also the day that my cousin Brian died in 1998, after the floor of his garage gave way. He was below, working on the underbelly of a car, and today marked the 17th year since he died. I will say that one of the things about living in a pediatric cancer bubble is that we have no room to decelerate as a result of nonessential emotions, anything that doesn't help us protect and cure and move forward. Nevertheless, I talked to my Dad, and I spent a lot of the afternoon thinking about Brian and the past, thanks in large part to an exquisite and beautiful testament to Brian (posted on Facebook) written by his brother and my cousin, Derek. Brian's is a great loss of my life.
But...cancer. Leukemia. Life is leukemia. This blog is about pediatric cancer, Aila, and her family, and there is no shortage of information to include! We saw Aila's "walking doctor" today. She was in a weird mood from the get-go, and while she complied with some activities, she refused others. Regardless, she seems to have plateaued for the last few weeks, willing to get on her feet and take isolated steps with assistance from time to time, but with no consistency. Most of the time, she still prefers to sit and "scoot" or even crawl. She and Declan seem to currently be in competition for who will learn to walk (again) first, since he can now crawl almost as fast as his sister and loves to pull himself up on any and all furniture. This past weekend, he even experimented with standing on his own.
Zander and Declan also had their long-overdue "annual" checkups with the pediatrician. Well, Declan's is more-or-less on time, but Zander's is about 5 months late, since his birthday immediately preceded Aila's diagnosis. He's so used to Sissy getting special trips to the doctor with Mom and Dad, and he was SO excited that he was going to be able to go to his own doctor with Mom and Declan today. He brought along his own doctor's kit, replete with many different medical tools. Although I'd tried to prepare him, he was REALLY unhappy when he realized that the doctor was going to first poke and prod before a nurse would give him shots. He and Declan both had three vaccinations each, which admittedly is a substantial number. (They would have had more, but no one in our family can get vaccinated with live viruses, so that eliminated one or two for each.) Zander screamed really loudly, for a really long time. What's insane is that it's very hard for me to have any perspective on the entire experience. I felt empathy for my son, but there was a huge part of me that wanted to scream, "don't you realize that your sister deals with this multiple times a week?!!!" As Brian said, "that's not helpful," and neither is it reasonable, since of course my intellectual brain knows that Zander is only four years old. But it brings to bear the question of how Brian and I will ever regain any perspective ever again. I suppose a (rather enormous) quandary for another day.
However unorthodox, my main sentiment after today's (very loud) pediatrican visit was an overwhelming THANK GOD that Zander wasn't the one diagnosed with leukemia. Maybe this makes me a terrible mother. My first-born baby boy is amazing, lively, emphatic, dramatic, and generous. But he's also very, very "communicative," and apparently without a very high tolerance for medical procedures (fair enough, as that's many of us).
T minus 6 days until the start of Delayed Intensification, the World War of pediatric leukemia treatment. I feel my anxiety climbing every morning. I see no way that this will go well. Next Tuesday, Aila goes under general anesthesia again for a spinal tap, where they'll give her intrathecal methotrexate. After she wakes up, she'll be infused with vincristine and a new drug, doxorubicin. None of the parents on the blogs I read have very much but disgust for doxorubicin, which is apparently red in color and firey in nature. She'll also start taking twice-daily dexamethasone (steroid) treatment again, which will turn her back into a pasta/pizza/soup-driven terrorist.
I said it in an early post, and I'll say it again here. I still don't believe in God. But, thanks to the overwhelming and astonishing kindnesses that we have felt and received in the last four months, my belief in and gratitude for the strength of humanity is at an all-time high. And I'm continually amazed by the fortitude of my husband, Brian, my sons, Zander and Declan, my 10-year-old puppy, Trinidad...and of course, my baby girl. This will certainly be enough, don't you think, to survive Delayed Intensification?
It's a very strange feeling to know that we'll be hurting you, baby girl, and with force...again...in less than a week. I'm so weary, and I haven't received any chemotherapy. But you are stronger than I ever could be, so please keep up your fight.
We love you with such intensity,
Mom
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Sherrie Li 8 years, 12 months ago
My darling Vic,
Link | ReplyEvery time I see one of your blog posts, I am conflicted. On the one hand, I am grateful to be able to have a glimpse into what you are thinking and to, in a very small way, be a part of your life. But on the other hand, I hope for the day we can reach the final post where you change the blog name to "A mother's blog about a little girl, her family, and how she kicked acute lymphoblastic leukemia's butt" and sign off.
I feel that there are no words I could write that could offer the comfort I so wish I could give. So instead, I shall give you honesty. You are the strongest person I know, and if Aila is stronger than you, then I have no doubts this horrible disease is just one blip in her lifelong journey into becoming an amazing human being. I know you like to deflect compliments away with a humble disregard of your own extraordinary qualities, but I hope you can trust in the fact that Aila could ask for no better mother or role model than you. You are the one that I (and certainly many others) want in my corner during my worst times (and best).
Love you and thinking of you, Brian, and the little ones (of the human and furry kind) always.
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