Delayed Intensification Day 1: Fear of the (un)Known

Today is the start of the final round of chemo before maintenance. It is almost a combination the the first two rounds that she went through. Today was a pretty rough day. She had a lumbar puncture with intrathecal methotrexate. She had vincristine and daunorubicin. She also had an EKG and an echocardiogram to check on her heart. She will begin a week of oral steroids. Her counts were good this morning (ANC 2100) so no delays or transfusions. She will be back again on Friday for a two hour infusion of peg-aspariginase followed by 2 hours of monitoring for allergic reactions. That is week one of eight.

On the one hand, it is nice to have the familiarity of knowing what this round entails. We know what meds she does well with, and what meds give her nausea. We stocked up on cheese (although I’m sure she will have a new obsession this week). We know that she has gotten better with her accessing and her port doesn’t hurt quite so badly. We know that she turns into a beast on the steroids and that she wants a sucker every time she is done.

On the other hand, we also know that it was with these medications that she became neutropenic with an ANC of zero. We are almost expecting to see a fever and an overnight. We know that, since her tantrums have been so bad, they are only going to get worse (literally tantrums on steroids). There is a sense of comfort with knowledge.

And then there is the unknown. The thing that frightens me more than anything. When Scarlett was diagnosed, we were told right away that she had acute lymphoblastic leukemia. They told us that there are two sub-types: b-cell and t-cell. They suspected she had t-cell ALL because she had a mass in her chest as well. If she had t-cell subtype, it would involve chemo and radiation. If t-cell relapses, it most often occurs in the brain. The radiation is a preventative for that relapse. B-cell only needs chemo. I prayed all morning that she had b-cell. Unfortunately that mass was where her leukemia cells were gathering – in her thymus. And it meant that she had t-cell ALL. So we went into the oncologist meeting to discuss long term and short term complications. Most of it I knew because of my job. But the radiation…I couldn’t wrap my head around that. I couldn’t think about sending my tiny, barely two-year-old BABY into that machine and sending radiation into her brain.

Now, almost six months later, I am no further along in my acceptance of that process. I still cry when I think about it. She’s going to be scared. She’s going to scream. She’s going to want her blankie and her mama. And the side effects! Radiation burns, learning disabilities. My sweet Scarlett is so smart. I can’t imagine her having problems learning anything. I don’t want that to start now. I love her bubbly, vivacious personality – always wanting to do what’s right. “That’s not supposed to be there” with her little finger wagging. What if all of that changes? What if I don’t recognize my beautiful baby any more? What if she isn’t my snuggly, huggy bear any more?

And this is the decision that must be made. Do we continue according to schedule and start radiation on March 24, risking her quickly developing brain? Do we wait until after she is three and risk relapse? Or do we fore-go all radiation and risk relapse? It is a decision that has my daughter’s life as a consequence.