Day 12

Big day today–our first outpatient clinic appointment at All Children’s. I read that a kid with Acute Lymphoblastic Leukemia has an average of 58 outpatient visits. We are just fine with that. Each visit gets us closer to the words we need to hear. (Plus, baseball season is right around the corner. We’ll have to coordinate our clinic visits with the Rays’ schedule this spring.)

After we dropped Banyan off at school, we packed up the numbing cream for Benji’s port, my binder of notes, and a lunchbox full of snacks for Mr. Second Breakfast. I put the numbing cream on Benji’s chest in the backseat, covered the area with Glad Press n’ Seal (nurse recommended–works great) and gently put his shirt back on. I could tell he was nervous.

Benjamin really needs to be involved in this process to feel comfortable and in control. I get that completely. I learned today to watch my assumptions: just because I know what’s happening doesn’t mean it’s been properly explained to him. So we talked again this morning about what to expect when we go to clinic, how it would feel when his port was accessed, when he’d be getting medicine and when they’d be drawing blood. And we reminded him that we were all still learning, and that things can change in this building at a moment’s notice, all in the name of healing.

Today was a good example. We arrived expecting a port access and were told they wanted to do a finger prick for the blood draw. They’ll only access the port when they give him chemo or transfuse blood or platelets. And since we didn’t know what our counts were, we went with the finger. It hurt. But he was totally and completely okay with it, because it was explained to him. And because his nerves about the port could be calmed for a few more days.

His counts came back just as the doctors expected. This is great news. We learned that his spinal draw from Friday was negative for leukemia blasts, and even the peripheral blood from the puncture was negative. His MRD (minimal residual disease) from Day 8 was 0.03%. If this number gets below 0.01% in the marrow on Day 29, he’ll be considered “in remission.” Then we’ll get into the consolidation, interim maintenance, delayed intensification and maintenance phases; a three year regimen designed to cure him completely, and to prevent relapse.

Both his platelet count and his absolute neutrophil count (ANC) were a little on the low side. Not cause for transfusion, but for a good conversation with the physician on call, Dr. Oshrine, about what to watch out for, and about what low ANC really means for his immune system. I’ll be very interested to see what those numbers are on Friday when we return for chemo. I also have a close eye on that port site. I know his body is slow to heal right now.

We came home to take care of the rest of the business of the day before a lovely family dinner. Benji’s face lit up when he played with our neighbor friends in the street at dusk. He may be a little pale and he doesn’t feel terrific, but his bruises have faded a bit with the platelet transfusions, and his hair hasn’t fallen out yet. Right now, he looks like a normal kid. And right now, I know that’s what he desperately wants to be.

Leave a Reply

Your email address will not be published.