I have a more personal Team Ewan update: we hit an unexpected bump in the road. Today was Ewan’s 1st out-patient visit and we learned that he will be in-patient again soon. Ewan’s cancer is not responding as hoped yet. His treatment of chemo will intensify starting Thursday. Response is measured by a Day 8 peripheral blood draw. The lab tests look for minimal residual disease (MRD). Ideally, he would have less than 1% leukemic blast cells. Ewan had 28.1%. The new current plan is for him to be re-admitted, likely on Friday. and stay at SCH until remission is achieved: 2-3 weeks. We know he will get better and this route will keep him safe from infection, but it is a blow.
Ewan has been very happy to be home. He has a voracious appetite that kicks in at all hours of the day and night. Cheese is particularly tasty; we have a new routine of being up at 3am to eat Kraft cheese single slices and talk able the merits of cheese pizza and cheesy pasta. The chemo certainly has not killed his sense of humor. We spent 2 hours talking about grumbling stomachs, last night.
For those interested in more specifics about Ewan’s disease, he presented as standard ALL. This means when he came into the hospital a 6 year old boy with a WBC of 16,000 and a blood smear consisting of 92% leukemic blast cells they were more than 90% sure he’d go into remission fast. A week later, some test results ( flow cytometry and cytogenetics) changed his disease to very high risk (VHR) pre-B cell ALL with an MLL (multi-lineage leukemia) rearrangement. Flow cytometry characterizes his cells as CD19+/CD20+/CD10-This diagnosis comes with a 70% remission prognosis. As previously stated, we now know that his day 8 minimal residual disease (MRD) was at 28.1%. The goal had been <1%. We’ve also learned that his type of MLL rearrangement is on chromosomes 9 and 11 (t(9;11)). This type of translocation is significantly less common than the type originally cast. It means that there is much less data. This sucks.
His new four-drug combination chemotherapy with consist of:
- daunorubicin (new addition)
Additionally, he will continue to take a large helping of protective medications: bacterim, allopurinol, senna, etc… he will start an anti-fugal when he starts the new chemo.
We are heart broken, but will get through this and know that he will get into remission. Cards, emails, calls and texts are welcome, but please NO GIFTS (unless Lego architecture or Lego City and ONLY those series). Our house just can’t accommodate any more generosity. Community and family outpour has been overwhelming, but it comes with a burden when people are always bringing new things in the door. With the start of school and soccer around the corner, it will be a busy time and all of us are spending so much energy trying to stay organized and above water. Please don’t weigh us down with stuff.
You can lighten the load by planning a visit, even if just a short one. Know that you will not be entertained but if you have time to spend with the other kids or at Ewan’s side, we will take it. (Naomi thank you for finding that sweet spot and being a quiet, strong and peaceful presence for a night.) Katherine is coming in for a week after Charolette returns home next Saturday.
That’s all for updates. I wish I had better news.