Post-antibody Update

     For some reason Christie and I went into this past week with a little too much optimism. We weren't naïve or uninformed about the challenges that antibody treatment would present, but we were thinking this treatment would be easy in comparison to Ethen's chemotherapy, transplant, and surgery. It was in some ways worse than any of the previous treatments.
     The week began badly. About an hour or two into the first day of treatment Ethen began to scream in pain. "All done, momma!" he cried intermittently. He searched for a position to lie comfortably, but the pain kept stinging his little limbs. Eventually, after 6 hours of constant swells of pain and developing capillary leak syndrome, Ethen's doctor halted the rest of the day's infusion. The capillary leak syndrome had caused some fluid leakage into his lungs, which was dangerous. After we stopped treatment, Ethen gradually found comfort as the antibody dissipated from his system. Day 2 of infusion was better, but managing Ethen's pain was a continual chase. By late in the day, Ethen had developed capillary leak syndrome again, which manifested at first as swelling in his hands and feet. Shortly after these symptoms, Ethen developed a cough. At first, we thought he had choked on a little water as he is apt to do. However, his cough persisted through the night, which was probably from capillary leak. Days 3 and 4 went more smoothly because of the adjustments made to Ethen's medicinal regimen. The combination of medicines basically put Ethen to sleep for the whole treatment. This made for restless nights, but if it means there's some comfort for Ethen, we'll be glad to lose some sleep! Thankfully the team found a plan for meds that seemed to get Ethen through treatment without too much pain, which will be where we pick up next time.
     Part of this phase of treatment entails giving Ethen isotretinoin (or Accutane) at home. You may be familiar with Accutane if you've ever had bad acne. So you may wonder why we're giving Ethen acne medicine. Turns out that isotretinoin "tricks" neuroblastoma cells into becoming normal cells. You wonder how anyone got the idea to put isotretinoin and neuroblastoma in a petri dish to see what happened. I haven't tracked down the history for lack of time, but I'll try to find the answer.
     As you pray for Ethen, please pray Ethen's body can recover well from treatment. We're told that most patients just bounce right back after the infusion of the antibody stops, but it hasn't been the case for Ethen so far. Of course, this could be from the C. diff (Clostridium difficile), which he contracted somewhere along the way. Ethen is on an antibiotic for this, but please pray it goes away. Pray that the isotretinoin is effective at converting any neuroblastoma cells to normally functioning cells. Pray we can all regroup and recharge. Happy Thanksgiving!