“Do we have any appointments tomorrow?” The question I’ve grown used to hearing every night before we go to bed. Lately my answer has been a delightful, “NO”. The reason is because we are in between phases of treatment. Let’s take a moment to review, shall we? Remember that lovely picture of the terribly confusing chart I posted a while back? You know the one. Remember that leukemia is treated in phases. Theo finished induction 1A part 1 and part 2 as well as induction 1B at the end of March. Theo is now at a fork in the road. In order to know which path of treatment to take next, Theo’s doctors need to know how much leukemia remains in his body. On April 7th he was scheduled for a procedure to have a sample of bone marrow taken, to determine the minimal residual disease (MRD). Unfortunately his neutrophils were too low to proceed (they must be above 500). So we waited one more week and returned the following Tuesday. Again, neutrophils were too low! Theo was very disappointed. He likes going to the “sleepy time room” because the sleepy milk makes him feel tingly and dizzy. Ok, third time is a charm, right? So we went back on Friday, April 17th and finally he was able to have the procedure done. If the MRD is less than 0.05% he will go to the standard risk arm of treatment. If the MRD is greater or equal to 0.05% he will go to the high risk arm of treatment. Next phase being either consolidation or interim maintenance. Now… we wait for the results. That could take anywhere from two to four weeks!
Not that I will miss going to the hospital. Going anywhere these days makes me nervous, even the hospital. What I miss is socializing with the staff. We have the best team of nurses, doctors, and coordinators. They make each visit feel like you are visiting a dear old friend. But let me tell you, it is a process just getting to the check in desk. We arrive about 30 minutes before our scheduled appointment time. There is only one entrance open to the part of the hospital where the hematology/oncology clinic is, where Theo is treated. There are two staff members waiting outside with a screening questionnaire. Once you pass them, you enter the first doors to have your temperature taken and appointment verified. All together this process does not take that long, but you could be waiting in line for a while if there are several other people trying to get into the hospital at the same time as you. Children’s Hospital also has a new protocol. For any child going under anesthesia, they must be tested for Covid-19 within 72 hours of the procedure. There is a drive through testing center close to the hospital. It takes about two minutes. The nurse came out dressed in a full gown, face shield, mask, and gloves. She leaned through Theo’s rolled down window and wham bam, swab into the way way back of his nose and held there for five glorious seconds. Easy peasy for Theo. This was his second Covid-19 swab, third swab in general in the last two months. It doesn’t seem to bother him too much surprisingly. Then we drove away. We were called within 24 hours with the results… negative, again.
It actually feels a bit strange not being at the hospital. So… now what do we do? Oh, we can just be home all day doing our thing? Cool. But really, what DO we do ALL DAY? I would love to tell you that we are doing science experiments, reading lots of books, doing fancy art projects we find on Pinterest, and hours of school work. After all, I am not working at all right now so I have nothing but time. To be perfectly honest, we spend our time doing whatever we feel like doing! Sleeping in, playing video games, watching movies, gardening, going for walks, coloring, fighting bad guys, “homework” in costumes, video chats with friends, exercise… and so on. Sure, we still have some structure and expectations to meet in our days during theses unusual times. We just let go of a lot of the pressure we used to feel to DO so much every day. I’m not saying we don’t have rules – there will always be rules because kids need them and we need our sanity! And fortunately, my husband Luis has his job and is still very busy working every day. AND he cooks dinner every night!!! (Because he’s an amazing cook and loves doing it). Wow, now I’m feeling lazy. Sometimes I feel guilty to be relaxing eating a delicious dinner of barbacoa or adobada tacos with a tasty beer during such a horrible pandemic and so many people suffering. But why? Haven’t I got enough to worry about? So I remind myself to enjoy the moment. Enjoy every happy moment when I can. Luis’s favorite chef, Michael Pierre White, is known for saying things like, “How much of this spice or that ingredient? Who cares? Do what tastes good for you” That is how I feel like some days. Sleeping in late? Who cares? Watch another movie? Why not. Have a dance party at 10pm? Yes please. Because Theo will only be this age once. Because Theo has cancer but he’s feeling GREAT. Because Theo can swallow pills (aka no more water medicine) YES!!!! Because Theo is happy.
“The most beautiful thing about cooking is the silent language. You can’t write about it” -Francis Mallmann