Oct. 24, 2016, 11:58 p.m.
Somehow more than a month has passed since my last post. It's easy to blame my writing absence on three kids, two careers, and a ton of laundry. But I actually think that the tiny bit of physical reprieve we feel as a result of Aila's Maintenance chemotherapy (which began in the Spring) has created just enough emotional space that some of the piled-up grief and exhaustion have taken center stage. Finally, I feel tired and sad. In a way, it's a relief, because there was not room for these emotions during the last year. Absolutely no room, as we plodded forward and onward.
When Zander started kindergarten in late August, Aila moved from our bed to her toddler bed in Zander's and Declan's room. There was consensus between Brian and me that at some point, albeit only very recently, we weren't quite as worried about spontaneous fevers and vomiting as we had (again, very recently) been. And that it would do her good to be with her brothers for the nights. So we moved her, and almost immediately I returned to a semi-normal sleeping schedule. I had gone to bed between 4 and 5am for more than a year! Only in hindsight have I realized that this pattern developed as a way for one of us to have eyes on her nearly 24-hours a day. Now I fall asleep when I have most of my adult life, between 1 and 2. We both still sometimes run in to feel her forehead, even when she doesn't have a cold. And we sprint from our room to hers if we hear even a quiet cry from her. But most nights, she sleeps without incident until morning alongside her brothers.
She goes to preschool about half of the time, which means about one day a week. She tends to miss because of innumerable medical appointments or dexamethasone-induced craziness ("I don't wanna go school! No! No! No!), and we honestly don't spend a minute fretting. We're just glad that she's around other kids for a few hours a week. Even a little "normal" feels good.
In late September, we went to Camp Okizu for a family weekend. Brian and I were desperately looking forward to it, and I have to admit that our very high expectations led to some disappointment. It was an unbelievably hot weekend, and our kids were simply too small to participate in a majority of activities. Aila also is now distressed (read: screaming at the top of her lungs) when in large crowds, which proved problematic since there were more than 30 families present. Brian and I did sneak away with a group of parents for a long walk through the grounds on Sunday morning, and it was then that I realized that it wasn't Okizu's fault that the weekend was simply too much and too soon. The kids are very little, Aila is still in the thick of her treatment, and we're all five very weary. We spoke with a father of six who'd lost his son a decade ago to pediatric cancer. We talked at length with a couple from Berkeley whose daughter had almost died but had long ago finished treatment and was now thriving, for whom cancer still shaped parenting decisions and milestones. We listened to everyone's stories, some more horrible than ours and some less. But we felt no horror, just empathy, warmth, and comraderie. Gratitude for their solemnity and vulnerability, that they paused long enough to listen to our tale that began changing our lives so many months ago. We will return to Okizu, without a doubt. Pediatric cancer comes with no psychosocial support in Northern California hospitals, no psychologist or social worker to help navigate the tears and horror, confusion and fear that have all become such a regular part of our existence...other than Okizu. In this way, Okizu was too little and too late. But thank the heavens for Okizu!
Just last weekend, we decided to take our first plane ride since Aila's diagnosis. Brian flew to Portland once for work, but I hadn't been on a plane since going home to my mother's funeral in May of 2015. Before that, I easily flew a dozen or more times a year, even after kids. Cancer had literally grounded us. So we hopped down to San Diego for my cousin's wedding. The wedding itself was warm and beautiful, but the trip was too much and too soon for us. Although I have no idea how "normal" familes of five with young children handle travel, we didn't handle it very well. Aila got a GI bug the first day and had explosive diarrhea halfway through the rehearsal dinner, so we missed most of that. Zander and I went alone to the actual nuptials in the chapel, since we didn't think Aila could handle it. There was a brief spell during the wedding when the kids were dancing with a cousin's little boy, galloping around and chasing each other. That moment was good! But Brian and I have learned that we have to preserve our energy for the long haul, and it was sapped by the time we arrived home.
This past Tuesday, I took her for a spinal tap (methotrexate) and infusion (vincristine), and she began steroids and her antipsychotic that night. I have had a bad sinus infection for the past week, and she caught it just two days ago. Which is not surprising, since it was clear that she has only a handful of white cells to fight when I glanced at her latest blood chemistry. She's been sleeping most of the day for the past two days. When she's not sleeping, she's demanding a gazillion types of different foods because of the dexamethasone. This is our normal. And it's sad, it is. And we are making the best of it, we really are. And we'll be okay. She hasn't relapsed, and as long as she doesn't...at least there is an end to her chemotherapy. When we ring in the New Year in 2018, we will likely be able to say that Aila has had her last spinal tap, last dexamethasone, and last infusion. A little more than a year to go. She will be almost five and a half years old. With the wisdom and soul of someone much, much older, I imagine.
We cherish you, Aila, and your sweet, brave brothers. Keep enduring and surviving.
Comments
JP Lindenmayer 8 years, 1 month ago
My heart goes out to you! I was not aware of this tremendous challenge you and your husband have to deal with. These are truly difficult moments! But I also see that you have tremendous resilience and courage! Good luck and greetings from New York/Manhattan Psych Ctr!
Link | ReplyPaulina 7 years, 9 months ago
Dear mother of a leakemic child from other side of the world. I was just putting my 7 yo psychotic son to bed, dexamethasone week, failing to find any reserves of patience within me to accomodate his fears and constant demands...I started googling dexamthasone + paranoia and found your blog.. you are able to articulate your journey so adequately that I found myself reliving it all again. Our son also has ALL and we are 2 years into treatment. We have also had constantly worried, have been tormented by grief, went through a jaded phase which then burst rather quickly when our sons infusa port became infected... your story is also my story! I wish I was able to write like you as there is so much to process and so much emotional healing needs to happen.. I'm not sure why I'm writing but I guess I connected with your story and couldn't help but reach out. I'm sending your daughter and your whole family a lot and of strength.
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