July 10, 2017, 12:48 a.m.
For some time, she had had these inexplicable blisters on the soles of her feet. We kept examining her shoes for wear and tear. When I took her to physical therapy, she had whined that her feet hurt as she threw herself on the floor and refused to climb the stairs. I had been mildly embarrassed and more or less unsympathetic at the time, given that she has been enamored of her specialness lately, assuming this was her latest way of reminding everyone of it.
But then, the escalating rhythm of her pain and suffering had somehow alluded me again. Damnit. It always seems like it was just a moment ago that she was happy and content. But then in hindsight, we realize that her tantrums and screaming and whining and tears were her four-year-old way of communicating her growing physcial and emotional pain. Of course they were.
We were slated to leave on Sunday for a week in Tahoe. We never dare plan out-of-state travel. But after staying home for her first entire post-diagnosis year, we decided it was okay to travel within California, especially within driving distance to UCSF. Starting on Wednesday, she woke up screaming in pain before spending the rest of the night in her "sick spot" in "Mama's bed." Sometime on Thursday night, we rushed her from the bed to the sink to throw up for the gazillionth time in her little life. And then, on Saturday evening, she felt very warm. Good God. The slightly inaccurate head thermometer registered a low-grade fever, but a different one read 100.8 under her arm at about 10pm. Okay, less than 101. Thank fucking god. Per protocol, wait an hour and take another reading. If still greater than 100, call. Waiting, waiting....10:20, 10:42, 10:55....good enough. 100.2. Really? No! This can't be. It's trending down. Isn't that good enough? Zander, your sister has a fever. "What about our trip, Mom?" Ah, Zan, I just don't know. Mom or Dad might have to take Aila to the ER tonight...again. I'll wake you up if one of us has to take her, okay? And you can come and sleep in our bed. And I honestly just don't know what this means for our trip. I really don't.
Technically, we should have called. If we were good soldiers following orders, we would have called. And they would have told us to come up to the ER. And her ANC might have been low. And we might have been hospitalized. But after he heard that our trip may be postponed--or worse, ruined enitrely by Aila's sickness--Zander grabbed his pillow and his blanket and curled up in a large box from a recently purchased Hot Wheels toy. A small space that was familiar and safe, over which he has some control. He fell asleep in that cardboard box on Saturday night, and we didn't call.
By morning, Aila's fever was in the 99s. And I had finally realized, during hours of Googling and contemplation the previous night, that her inexplicable blisters were probably best explained by an enterovirus called hand, foot, mouth. Mild and mainly harmless, with a short 4- to 6-day course, for kids with healthy immune systems at least. How long had those blisters been on Aila's feet already? Two weeks? Three?
We drove to Tahoe on Sunday. Yes, we were worried the entire time that the fever would return. I researched ERs in Tahoe and Reno and rehearsed the different scenarios that could ensue. Fever and ER in Tahoe, ANC below 500, ambulance to UCSF for hospital stay. Fever and ER in Tahoe, ANC okay, IV antibiotics, back to rental. This is why we can't plan trips. What is wrong with us? Did we somehow forget?
The fever never returned, and we had an exhausting but okay time in Tahoe for the week. Zander was able to splash around in the lake three or four different days while Decky frolicked on the beach in his birthday suit. Aila's blisters proliferated with a vengeance, and she caught a horrible cold early in the week. She screamed and cried a lot of the week. Had trouble sleeping because of the cold, so we gave her dose after dose of Benadryl. Was angry and defiant because of nausea and malaise (we assumed), so we gave her dose after dose of ativan. We took a trip to Reno one afternoon, and she vomited all over the new car. Zander said he was scared.
But...we went to Tahoe. And I hope that's what they remember. I really do.
I wrote an email to a very close friend the other night, and in it I tried to articulate some of the agony of this experience. From the very beginning, the focus from the world around us--friends, family, doctors--has been entirely on her survivial. What's the prognosis, people still ask. Of course, her survival matters. I want her to live more than you do, trust me on that one. But she's been getting chemotherapy for almost half of her life, and she's been crying and suffering most of those days. Sickness and side effects and more sickness. Yes, she's strong and resilient. But she suffers. And our hearts---her parents' and siblings'---break a little bit more each time she cries. Watching her in pain--being unable to help--is a kind of suffering all its own.
So yes, her prognosis is good. As long as she doesn't relapse, that is. Thank you for asking. But please don't mistake that for everything being okay. And please don't tell us that her survival is all that matters. Her suffering matters too, maybe even more. So does ours. I doubt your child has been sick for the better part of the last two years of her life. And if it's too hard to hear about our pain, I totally get it. Really, I do. We don't need to talk to you about it. But please God don't make us pretend everything's fine because it makes you too uncomfortable to hear about how it's not. And if I sound angry, it's because sometimes I am. My guess is you would sometimes be angry too.
Aila, we your family will stand by you and with you every day of your life. Knowing how much you have suffered crushes our souls. One day, this will be your story to tell, to make meaning from. My words in this blog are just my version, but the real story is yours.
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