Now that we’ve gotten to enjoy Ava’s MRD- news for a week or so I’d like to answer some questions we’ve been getting.
Typically a child with leukemia reaches MRD- at the end of induction, the first 4-5 weeks of treatment. If not by then, by the end of consolidation the next 60 days of treatment. After that they have to go through another two years of various types of chemo as an insurance plan that the leukemia will stay away. The hope is that doing it this way they will avoid a relapse.
As we all know Ava is not a typical child. Since she was unable to become MRD- by the end of consolidation she moved to CAR-T. This means that the she is done with chemotherapy. This is bittersweet because while it potentially saves her two years of pumping poison into her body, we do not have the chemo running around keeping the leukemia away. Because of CAR-T our hopes and prayers are that those cells continue to work for at least 6-12 months. We need them to stay that long so that they keep her B-cells away and give her body time to forget that it ever made leukemia cells. This makes it literally a wait and pray situation.
In the mean time we will have biweekly or monthly checkups to monitor the situation and administer her IViG. This coming Friday we will go and meet with the team for labs, a checkup, to discuss port removal, and her return to school. As I’ve mentioned before this is something that has her very stressed. She’s scared to go back without hair. She feels she’ll be made fun of and no one will like her. We’re scared to send her back during cold and flu season. Yet we’re all in agreement she’s so bored here and needs to go back. She needs to socialize with kids her age and needs the mental challenge that learning brings.
Besides all this we’re really just making an effort to live and enjoy life. If AJ’s B-cells return before six months she moves directly to a bone marrow transplant so we’re packing in as much fun as we can. We’re being hopeful and planning some trips for the spring and summer. We’re hoping to get to a few fun spots around MoCo was well. Of course it would be easier if we weren’t in the middle of cold and flu season and the darn corona virus weren’t around to scare me even more. But she’s fought to hard and we’ve been through too many scary scenarios to continue living in fear. In the end all we can do is put our trust in the Lord, give thanks, and live.
So what’s next? Lots of prayer, thanksgiving, and living!