Dec. 24, 2015, 1:19 a.m.
When I go back and reread my early blog posts, I remember how overwhelmed, scared, and in shock we were. I wasn't focused on sharing details as much as I was our emotion. And in general, I see the world and the people in it in terms of the emotions that they and I feel, so my blog is honest. But, if this is to be an archive for Aila and our family in the distant future, it would be prudent to also chronicle some of the details.
I took her to the ER at Stanford on Saturday, August 8th around 3 or 4pm. Her fever had been consistently at about 104-105, when not managed by tylenol, for at least 36 hours. We had spent 5 hours on Friday, August 7th, in the pediatrician's office. They never took her blood and sent us home. In the ER, we sat for about two or three hours before anyone saw us. She sat on my lap, hot and clinging to me limply. Finally, they took us to a room, and what I remember is their giving her an IV line for fluids. At about 9pm, they took blood. And about an hour later, after Brian had arrived with Declan and Zander in tow, the word leukemia was used. But maybe a virus...or some kind of leukemia...but it could be a virus, they're relentless, those viruses...or maybe aplastic anemia...or a virus. As I write this post, I sit staring at her blood results from 8/9 (I requested her medical records toward the end of her hospital stay at LPCH, and we have them in paper copy), and with the knowledge that I've gained in the last five months....I think they knew then and there. Her ANC (absolute neutrophil count) was 0, and her white blood was 2.7 (normal range is 6-17 K/ul). But...97% of her white blood looked like it was "lymphocytes." I think they knew that they were in all likelihood lymphoblasts, but couldn't tell us then because they didn't have 100% confirmation. I think it was probably at that moment, in retrospect, that my trust with the medical system and doctors was severed. No one trusted that we were smart enough or non-litigous enough to take part in the process of arriving at a different diagnosis. We could only be trusted with the end result (acute lymphoblastic leukemia), moments before we were asked to sign consent for immediate chemotherapy.
But...details, Aila Muriel. Your mother is better at emotions and not as solid at relaying details. A hazard of the trade, I am afraid. Why had she been having these fevers? Many kids who end up with ALL diagnoses are not diagnosed via this perilous trajectory. Aila, as it turns out, had contracted a bacterial blood infection, pseudomonas aeruginosa, which lives in wet environments and from which humans are fairly good at protecting themselves when sound immunity is intact. Brian had cleaned our disgusting, multi-year mold-infested, front-loading washing machine with a vengeance just days before the fevers emerged. No proof, other than two parents' 100% confidence that Aila's pseudomonas aeruginosa in her blood came directly from the Samsung washer. So much so that after Aila's first 28 days in the hospital, when we landed at home, we replaced it with a brand new LG washer. We do not have piles of money, but no cost was too great in this case.
With this most recent hospitalization, her fourth multi-night hospitalization since her 28-day initial stay at LPCH, they spoke of possible sepsis after we had been in the ER for six hours on Sunday. When we arrived, she was afrebrile. But we were there for so long that the fever that her father and I had observed over the course of the past two days emerged, and suddenly there was fear that she was experiencing sepsis. During the first four hours we were there, I had made my feelings EXTREMELY clear that I had wanted to take her home and that hospitalizations enleashed havoc on our home. The first ER doctor was lovely, very gentle and with sock puppets. But then the shift change occurred at 7pm, and the new ER doctor made it immediately very clear that he didn't like the way she looked. Of course, he hadn't seen the way she had looked for the preceding hours, but I guess that was irrelevant. The thing is, Aila Muriel, you were not neutropenic, and they knew that. In fact, your neutrophil count was high, possibly because of the dexamethasone, but nonetheless, it was high.
But, later in the week your amazing father found this neutropenic fever protocol, which more or less indicates that this was the way things were going to go no matter what we said or did, once the fever emerged in the ER. And you're two. No one wants to kill you. Err on the side of precaution. I get it, I get it, I really do. And if we thought that you were at risk, we wouldn't fight, we really wouldn't. We didn't argue much at all for at least the first three weeks of your stay at LPCH. (Ack, I'm digressing into the world of emotion again!). Anyway, your father and I are pretty sure that you (we) are going to spend a majority of the next two months in the hospital. But for some selfish, silly reason, I just want Christmas. I want to see you walk (or scoot...or maybe I'll carry you, I don't care) into the living room and realize for a moment the magic of Santa. I'm often the most jaded woman in the universe, but I want this for you...and for me and your father and your brothers...more than you can possibly imagine.
One of my goals for this ailamuriel.com project, eventually, is to make it a resource for newly-diagnosed familes, where they might come to access both medically sound information as well as parent-sound information. For me, information has come largely from other parents' blogs, and in the end, I'd like to include a compendium of the ones that exist. Incidentially, after I referred Brian to one last night (Nico's Blog ), I got oddly jealous with how much he related to it. It's much more focused on details than our blog but still very honest. I think my sensitivity about the blog speaks to my exhaustion and my vulnerability with regard to exposing our story and my writing. But, you know, we all see the world a bit differently. And I know at this painful juncture in my life, I benefit from hearing what just about anyone has to say. I'm just tired, Brian. I'm just so grateful that we are both reading.
So, happy Christmas Eve. I have to admit that I right now feel jealous of friends' and colleagues' trips to near and far, to see family and explore. But really, wouldn't you? The Cosgroverstreets may be inpatients at UCSF Benioff. Or with any luck we'll be home (albeit temporarily, because come on...there's really no way that she won't get another fever soon). Tomorrow is decision day, and of course we'll be okay either way. But wow, this is an endurance race.
Sweet dreams, baby Aila Muriel. No fevers, okay?
Mama
Comments
Angela Tana 8 years, 11 months ago
Vicky I'm here listening always. This blog of yours is amazing and I think the emotional aspect of everything your family is going through may ultimately be the toughest part of this arduous journey because as you well know the life of a cancer family will change family dynamics forever. According to my wonderful neighbor whose daughter (now in her early thirties with a husband and 4 year old daughter of her own) went through treatment of one of the rarest and most life threatening forms of leukemia your life will forever change and your kids might end up having difficulty relating to their own peers, etc. but according to her it has its blessings too. Your children become very mature and your bond with your husband becomes stronger then ever. Frivolity has no place in a cancer survivor family. XOXO
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