Feb. 10, 2016, 2:23 a.m.
A lot of good things happened in my life today, and I'd like to note that none of them had to do with work or achievement and all had to do with connections and people, near and far. I learned (via text...but really, how else would this happen for working, busy, people? What DID we do when we didn't text?) from one of my oldest Bristol friends about how he had made a significant change in his life, altering its course. I watched my daughter make me a "play" pizza during her physical therapy with her "walking doctor," offering me only one slice (only one, Aila?! really?). I went for a short run, and although I felt every bit of my prolonged sleep-deprivation and almost-40ness, I was grateful for the time in the sun. It was one of those February Bay Area days when the sun is shining and it feels like summer (and those of us from Bristol, CT feel very out of sorts, but happy to wear shorts?). And at Stanford today, a place I have found to be so focused on achievement and gold stars, I spent the day having meetings, coffee, and soup with women (all women!) whom I respect, admire, and appreciate. And just now, as I began to write this post before I go to sleep next to Aila, I read a note from a very close friend from graduate school, from whom I've been estranged, which stopped me in my tracks for a moment.
And...we're all so tired. Aila finished her infusion marathon last Thursday, but her bone marrow and blood are only experiencing the subterfuge this week. We've been tasked with having her blood drawn at our local hospital lab (where she gets a teddy bear ALMOST every time (none today--I'll be checking into that) daily this week. Newly-minted three-year-olds aren't big fans of having their blood drawn, so this has not been such a good deal for my Dad, who has taken her for the past two days. On Monday, her platelets were very low (6,000 whatever-the-units-are), so her nurse practitioner started calling Brian relentlessly early Monday afternoon. It should be noted that she does not call me because she doesn't really like me. Maybe for a ton of reasons, but primarily because my father lost our "paper" prescriptions for Aila's oxycontin and ativan (yep, she takes those) last week, and I had to ask for new ones. She implied that I was overdrugging Aila, and I lost my cool. I was at the outpatient clinic with Aila at the time, for infusion #8095. Our conversation ended, and I just couldn't stop crying. Who was this woman to suggest that I would ever try to drug my child? I felt what I so often feel, that even the professionals slated to care for Aila have simply no curiosity about or understanding of the chaos of her cancer or its treatment, on her or on her family. Anyway, Aila needed a platelet transfusion, which of course we wanted to support. But we have two other babies and two full-time jobs, so it's hard to get there on someone else's timetable with no warning and full days of work scheduled. We made it happen, with Brian skipping out of work for the 1000th time at 3pm after my father driving Aila to UCSF (with her brothers, before driving them back home), and my heading up to UCSF, after a full workday, to bring Brian and Aila home following her 6-hour transfusion.
Another blood draw awaits for Thursday, but we all have a day off from medical trauma tomorrow. My father was so exhausted and overwhelmed (completely understandably) after taking her for her blood draw this afternoon that he began crying when I called him. He has been through so much, and we are so incredibly grateful for his presence in our lives and our children's. But we want him to take care of himself, too! I wish that he could better tell us his needs. We can always accommodate his needs, but it's so, so hard to guess what they are (and suppose this has always been the trouble).
In spite of having no blood (as I like to tell her, with stern warnings), Aila has been in oddly good spirits for the past several days. Toddling around (of course, her walking resembles that of a very small robot), hugging us, demanding french fries. She has no oxygen-carrying cells or cells to stave off bleeding...but hey, the Lego Movie is great (AWESOME!)! Also, why don't we play Hide and Seek, Mom? I'm going to go hide in the closet. Can you find me?
Nothing more for this post. All I have to say right now. Thanks universe for another reminder that people are amazing and that we are so grateful for all love sent our way.
We love you, baby girl. --Mom
ps--We've decided to sometimes only speak in cancer acronyms in this household (onc, onc, onc). Good practice for when we are inpatients. Plus, it's kind of funny.
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