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Disappointments and Silver Linings

It’s an odd feeling to be supremely devastated and intensely grateful simultaneously. I didn’t know this particular emotional cocktail existed, but let me assure you, it does.

This past week was supposed to be the start of the most intense week. We were scheduled for four days of back-to-back chemo with 3 new compounds, a spinal tap, and one 12 hour infusion. On Monday we took her for blood labs and were shocked to learn she had dropped from 1820 the week prior to 400 - she is neutropenic (easily susceptible to infection) and didn’t qualify for chemo. This a common thing to happen around now but we were still let down, having mentally prepared ourselves to charge ahead. Amusingly, Thea was upset too, because she was really looking forward to hours of uninterrupted iPad time. Now we wait week by week for counts to rebound.

¯\_(ツ)_/¯. Welp, we’re back in the world of no play dates, no visitors, sanitize the sanitizer, etc. We spent this week mostly indoors, thanks in part to the rain, and to keep Thea isolated from infection vectors. We’re like this tiny, hermetically sealed family right now, giving me lots of time for reflection.

In tandem with this delay, Thea’s hair fell out over a period of 6 days or so. We first noticed it in the bath and then it was just everywhere. No one prepares caregivers for how bizarre and frustrating this is. Two to three times a day I had to comb through her hair with my fingers, pulling out the clumps, trying to be as chill as possible, literally sashaying to the trash with my back to her so she wouldn’t see it all. That week was spent picking up hair from every imaginable surface all over the house. It was just incredible, really.

One morning around 6:30AM I realized Thea was awake but oddly quiet. I gently opened the door to her room and found her staring distantly at all the hair on her pillow for a long time. Later she invented a novel mental strategy where every time we find her hair on something, she teases and chastises me for leaving my hair everywhere.

Thea has had a few quiet, sad moments but I quickly realized something I had never thought about - five year olds really don’t spend that much time looking in the mirror. Sure there’s brushing teeth or the odd glance when playing dress up, but still not much compared to older kids. What an amazing self-preserving reality. Thea doesn’t look at it that much, so it doesn’t make her sad that much.

Guess who sees it all day, every day? Me. And while nothing has changed for her medically speaking, seeing this is deeply changing for me. She suddenly seems so fragile. Still so bloated from the steroids last month, with her sparse, wispy bald head, I find myself accidentally staring at her, constantly kissing her and snuggling her close. Jeff has repeatedly encouraged me to sleep in our top floor loft to get a good night’s sleep and I keep turning it down, I myself having separation anxiety from being too far away from Thea. That’s where I’m at.

To answer some of your questions about hair loss:

  • Yes, she loves wearing all sorts of hats and wigs. She has nearly 50 from all of you beautiful souls and picks at least one a day to match outfits or moods. She never wears them all day, usually getting hot or annoyed after an hour or two.

  • No, she does NOT want to shave the rest off. We’ve offered and talked it through. To her, having any hair is better than no hair. As much as I would like to shave it off, I completely respect her feelings and wishes.

  • Yes, people do stare in public, which is totally normal of course. We role-played with Thea and discussed this and she knows her options. Usually she smiles and waves. And to be honest, half the time she doesn’t notice like I do. Sometimes I fantasize about having business cards in my pockets that just say “Yes, she has cancer. We’re doing fine, thanks. Thanks for your concern.” and I could just silently pass them out.

  • No, I have no clue what I will do when this rain clears and sunny SF comes back and she doesn’t want to wear a hat. How to sunscreen a wispy bald head? We can use the clear sprays but it might result in a character from Mad Max: Fury Road. Taking suggestions, thanks in advance.

  • Yes, Siggy is completely used to it already. Only in the very beginning did she comment, almost finding it funny. She chanted “Thea’s hair is coming out” until she learned Thea didn’t like that. She doesn’t mention it at all other than to ask if she too received new hats in the mail. I think a three year old has absolutely no problem accepting no hair as normal. Things about the world surprise her every day. After all, this is the girl who still needs clarification from me every day about whether nap time is night time or night time is nap time.

Gone are the days when we were out in public and no one would have a clue we were anything but a normal family. Here are the days spent mostly indoors. Nanny Brynne’s visits, Siggy’s parks & rec classes and nap time now break up the epic play sessions these two sisters never seem to tire of. I thought I’d be depressed spending so much time indoors, especially with the intensity of cleaning and sanitizing, but our time together is the silver lining! Steroid rage is nearly gone. Various factors combine to produce a record low frequency of hospital visits: Once in a span of 20 days. We’ve settled into a pace at home that is oddly sweet and comforting. Cue gratefulness!

Almost a year ago I made a decision to take this year off of work because I wanted to soak up every last minute with the girls before Kindergarten starts next year. Ironically, I never imagined moments as sweet and delicious as the ones we’ve shared in the last weeks. We’ve spent hours building lego tableaus, custom decorating doll houses, playing out beach trips and mountain hikes. Every day after nap we have a new tradition. I cue up the ending of a Great British Baking Show episode on the iPad and we snuggle under blankets and discuss the bizarre cakes and pastries being made. Siggy pipes in every half minute or so “oooooh. I wish I could have dat WIGHT now.” Thea, playing with new vocabulary from the stubborn steroidal salt cravings, comments “oooooh a savory one.” When Jeff gets home, laughter and giggle fits punctuate the entire evening together. Though I may be exhausted by the end of the day, it doesn’t diminish the beautiful moments in any way.

Art on steroids: Thea swimming in a pool of cheddar broccoli soup

Art on steroids 2: "I made a cheddar soup hat"

In the early days of all this I connected with another mom with two girls, the same ages as ours at diagnosis, who are now five-years-cancer-free. I spoke with her on the phone for an hour and don’t remember every word, but I will never forget one prophetic comment she made. She was recalling their time in frontline treatment. She said that time in her mind was mostly about constant Frozen dance parties, endless arts and crafts, and an incredible closeness with her girls. Raising a family in SF with dual-working parents, I think the word “busy” is an understatement. As many parents can attest, weekends are full of birthday parties, sports games, chores, errands and so much more. Weeknight evenings are a blur of meal prep, homework, routines, laundry, and collapsing into bed. Before this I would actually feel guilty if a Saturday passed without us seeing friends or going out. In a strange way, leukemia has given me permission to slow everything down in a way I would never have experienced. I won’t go so far as to say I love every minute, but it is most definitely a gorgeous silver lining and I know I will treasure these weeks as we push on through the bad stuff.

Princess Jasmine sent us a yarn wig then facetimed us

From an old petition - thank you, google image search


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