Before leukemia Jeff and I always joked that we each had a preference for the daughter that was more like our spouse and less like ourselves. For those that know us well, that means Siggy has me wrapped around her little finger, and Thea is known to keep Jeff in her room for over an hour “saying goodnight” (read: manipulatively stalling by asking science questions). Obviously and of course, we love both our girls with all our hearts, but it was fun to notice these little things.
Then leukemia hit and I had so many mixed feelings when I thought about Thea dealing with this unimaginable, awful illness. I thought of the little girl who screams violently when getting a paper cut and I was filled with worry. I thought of her ability to marathon-whine when she wants something she can’t have, increasing the dramatic groans and grunts with each passing minute, and I was filled with worry. I thought of the girl who once thought the expression “getting fired” meant a boss literally throwing fire on an employee, an image that caused her so much anxiety she didn’t sleep through the night for weeks. I was filled with worry. How was this sensitive, dramatic, intense little girl going to get through this? I was so, so very wrong, and I just have to tell you about it. Lately I’m utterly overcome with awe for this girl. On some days, just watching her play across the room – I swear she is filled with light, and it moves me.
First the physical strength. The resilience of this body! It is absolutely noteworthy, lucky, and an incredible gift to all of us that Thea has not had dangerously suppressed blood cell counts since her initial diagnosis and hospital stay. This was not what we expected or were told to expect. We’re currently in a stage designed to drive down her counts and here we are, still well above the dangerous threshold of 500, with her counts even rising between doses this week. Her body is a marvel. It means we can still go out of the house, still have playdates, still create a somewhat normal life for her and our family. Even the strongest kids wither in the Delayed Intensification (DI) stage we tackle in February, so I’m cherishing these moments.
Forget blood counts and infection and stamina, let’s talk side effects. When we left the hospital back on October 22nd, we carried an entire backpack’s worth of meds out. Most of these were to manage side effects: One for constipation, one for nausea, one for pain, etc. Here we are, over 3 months into the 8 month frontline treatment, and we’ve barely touched them. Post-steroids, her appetite is totally normal. We can count on one hand the number of times she’s vomited or had a fever, and there’s really only the periodic whine from her about pain or discomfort these days. From other families we know this is atypical. Her body is badass. She’s kicking butt.
Obviously we still worry. Constantly. That said, her behavior reassures us that she’s still our same Thea. The biggest side effect challenge so far is neuropathy in her feet and legs. She trips and falls constantly, and she’s starting to walk differently, with her knees going inward. This is likely a side effect of vincristine, one of the chemo drugs she’s on. It was rough and made me sad for a few weeks over the holidays, but we have a physical therapy appointment coming up to see what we can do at home to mitigate it. Plus, of all the side effects out there, I think I’ll take this one. I’ve also been amazed to see her starting to compensate by walking slower and trying not to talk while walking. I initially didn’t think she was old enough to do that, but she’s constantly surprising me.
Our house has come down with several colds, including one that really took me out for a few days. Somehow, Thea has only had minor symptoms of these and it hasn’t impacted her or the chemo schedule that much.
The other part, her spirit, that’s the one making me well up lately. Is it just me or has her smile gotten twice as broad as before? Her eyes extra twinkly? Her face literally glowing? I don’t know what’s going on but she’s so vivacious right now. She wants to learn how to read and is constantly sneaking off to a corner to “write” a new book or practice reading some of the books we’ve been working on together. I made her a little “school” clipboard with various activities and she acts as though I’ve assigned it as daily homework. She finds joy in everything and her laughter is so contagious.
She is an utter champ of a patient. It’s like she’s built a little identity for herself around being a mature, responsible cancer kid. She takes all of her medicine with no complaints regardless of the taste, pill size, frequency, etc. One of the side effects of this stage is mouth sores and they recommend a mouthwash to help it. Her nurse said she didn’t really have to use it unless it was bothering her. On the contrary, Thea loves being big girl enough to know how to use it and reminds us when it’s time each day. Uncle Geoff gave us some mints that are good for this too and she responsibly carries them wherever we go.
We’ve been encouraging her to advocate more for herself at doctor appointments rather than having mommy and daddy do all the talking for her. At her last appointment, the doctor asked if she had anything to tell him and she said, “I need to tell you something and my Mommy’s not going to like it. Mommy and Daddy always forget my first dose of medicine on Saturdays.” HAHAHAHAhahahahHAHAHAHA. The doctor and I almost fell out of our chairs laughing. This is completely true (but also a non-issue we had already worked out with her nurse).
At all her appointments, whether it’s a blood draw in her arm or a port-access for chemo or even for sedation, she puts on this adorable brave face and says the most outlandish stuff…
“I LIKE getting poked with needles!”
“Getting my button accessed is so easy.”
“This doesn’t even hurt at all!”
None of this is 100% true, but whether she believes it or says it to convince herself is irrelevant – she’s super, super easy to work with for all of the medical staff. And it makes everything much less stressful for us as caregivers. We are tightly crossing our fingers that this attitude persists, as we’ve heard it sometimes turns during the next stage.
Her maturity extends socially too. In the initial induction phase, Thea shut down socially. She didn’t want to talk about leukemia, what was happening to her body, listen to nurses or doctors prep her, etc. It terrified us as it is so out of character. Now she’s actually too open about it. As in, we’re in line for a sandwich and she yanks down her shirt to show her port to the stranger next to her. Yikes. She tells anyone on the playground about how she has leukemia and she’s not in school but she’s going to Kindergarten next year. It is funny to watch people’s reactions but we may need to help her tone it down a bit eventually! The openness means something important though – it means she’s comfortable talking about sad things or worrisome things related to being sick. It’s comforting to know she’s not bottling things up inside (at least we think). We were incredibly lucky to get a spot in a child trauma project at UCSF where our whole family can participate in therapy together, so we’re hoping that will help us figure out how to navigate all this stuff.
All of this incredible physical and emotional strength wows us daily. More importantly, it means we can have an almost normal life in public. Since Thea has been lucky enough to still have her hair, no one can tell she’s sick. And since her counts have stayed up, she has energy and can be out and about looking totally typical. No one gives us sad looks or whispers or backs away. We’re not yet an “other” as they say. I am so, so grateful to have had these weeks/months of relative calm.
In a superstitious way, I was afraid to write about these feelings, fearing I’d jinx it, but then I decided I’m done with that. Leukemia sucks and I’ll take celebration any chance I get. Plus, based on my research, there’s no way this streak will last through the next stage, so I might as well shout it from the rooftops while we can! This way I can look back on this post when things are bad and KNOW that they will get better again. We’re halfway through interim maintenance, so hopefully we still have 30 more calm-ish days before the Delayed Intensification (DI) storm comes.