After the initial 11-day hospital stay, we had a few more weeks of “Induction” — wherein the goal is to kill all detectable Leukemia cells with multiple intensive chemotherapy medications. The next few weeks were overall pretty rough — oral chemo, outpatient chemo, several more blood transfusions, two more emergency hospital stays (which have to happen with even a low-grade fever), ongoing constipation (a side effect of one of the chemos) and aggressive efforts to clear it (because constipation poses serious risks for kids who are very immuno-suppressed), and another spinal tap. We learned quickly how precious and tenuous time at home is — because at the drop of a hat we have to pack our bags and head in to the ER. The drugs made Ethan highly emotional and very irritable, super hungry, and gave him insomnia. We’d catch him at his desk at 2:00am, drawing and in tears because he felt incapable of falling asleep. Ethan often felt crummy physically and also watched his siblings go on with everything from school to their activities and birthday parties and outings. Especially difficult is watching his little brother starting to do all his very favorite things — hip hop, basketball, variety how. Such a sudden and difficult new reality. He saw some friends for brief visits when he was feeling up to it, but those moments were hard to find. It often seemed hard to recognize Ethan; he barely seemed like the same kid and both his siblings and cousins voiced that.
As part of the district’s hospital home schooling program, Ethan can receive up to five hours per week of schooling at home. His second grade teacher Mrs. Lukkes agreed to be his home-school teacher, for which Ethan and Mom and Dad are beyond grateful. Her plan is to come for 1 hour 15 minutes four times a week, though we have only been able to have about 1/3 of our sessions so far due to hospital stays and the unpredictability of how Ethan is feeling. I try to do some of Ethan’s schoolwork with him in the morning — but the balance between caretaker/comfort provider and “teacher” is a difficult one. Ethan has been able to keep up with his daily reading, and we’re finding so much joy in reading aloud together — cuddling and talking about interesting books without the interruption of his siblings. Reading aloud has been a great way to keep Ethan thinking even when he feels too miserable to do other work. We’re also aiming to write daily in his classroom journal, but that has been a challenge for Ethan, as he’s often been too exhausted or emotional to put pen to paper. We brainstormed ideas for alternative ways to get in some writing, and he just decided to start a “Science Blog” which he’s excited about. He’s done one short post so far — check it out at www.ethansscienceblog.wordpress.com. My primary goal is to keep Ethan reading and thinking and engaged in some learning that’s interesting to him over the next many months. And with the help of his teacher, hopefully he’ll get in enough of the 2nd grade curriculum.
After Ethan’s Day 29 lumbar puncture (during which the crucial test for remaining Leukemia cells was performed), Ethan had about a week break from the meds until the next phase would start. About 2/3 of the way through that week, the meds started to leave his body and we saw some of the old Ethan. In the last few days, he was often happy and his numbers were high enough to go out a bit. We were so happy to see some normal positive interactions with his siblings — though we were also fearful that they would be short-lived as the next much longer phase of intense chemo was about to start.
At the end of Induction, we got some numbers back, which unfortunately weren’t as good as we had hoped. Last Tuesday (12/2), we learned that Ethan’s Day 8 biopsy yielded an MRD (Minimal Residual Disease) of 2.7%, which put him out of the “Low Risk” treatment category. This is an early measure of quick response to treatment (which research has shown to have prognostic importance), and he had to be under .01 to be a candidate for Low Risk. We were then praying that the Day 29 MRD (taken after 3 more weeks of chemo) would be under .01% — which would make him Standard Risk. Two days later, On Thursday (12/4), we had a family meeting with our oncologist and learned that the Day 29 biopsy yielded an MRD +.03%. That’s close to the .01 cutoff, but still not good enough, so he has now been put in the “High Risk” group. Cure rates are still high for this group though not as good as for the Low and Standard Risk groups (80-85% vs 90/95%). We’re optimistic though it’s hard not to be fearful at the same time. 85% is good odds for Vegas, but doesn’t feel so great when it’s your kid’s life. Being in the High Risk group means Ethan will get more aggressive and more toxic treatment, including treatment in his central nervous system, with more side effects and more overnight hospital stays in store.
On top of the news that Ethan is High Risk, at the family meeting he also got randomized to Arm B of the national COG (Children’s Oncology Group) study. Arm B is the experimental group that receives more drugs in the CNS (central nervous system) and tends to be more toxic. In the days following the meeting, we started to question whether or not we wanted him to receive the more aggressive treatment. If we decided we did not, we could withdraw him from the study and he’d receive the standard of care. We had to decide quickly because treatment would start up again in a few days. We poured over a lot of the research and came up with numerous questions, and were finally able to talk with some of the leaders in the field who advised that we stay in the experimental group because of its greater protection against CNS relapse (which would not be good). I think we’re OK with the decision, but it’s hard to wrap our minds around how much chemo he’ll be receiving.
So that marks the end of Induction. What a difficult few weeks, with difficult news and a rougher road ahead than we had anticipated at initial diagnosis. We’re grateful about many aspects of his diagnosis (B-cell not T-cell, that he has good genetic markers that kept him out of the Very High Risk group, that the outlook still looks good). But I’m so nervous about what lies ahead, and want more than anything that life for him has less crying and more good moments than seemed to happen in the last few weeks. Still, we had some highlights that added some light and some smiles, including: spending so much time with Nana and Papa; frequent visits by cousins Max and Sam (his favorite people in the world); learning from Papa how to play chess; chess playdates with friend Jack and cousin Max; visits from some of his best buddies including Quinn, Davin, Luca, Jack, Brennan, Super Max (and looking forward to visits from other great friends whom he hasn’t yet seen); Roma d’Italia pepperoni bread; a more intimate than usual Thanksgiving with immediate family, Nana and Papa, Aunt Tracy and Uncle Jeremy, and cousins Max and Sam; a visit from his Big Buddy at school Steven Tolsma (he looks forward to more of these!); school sessions with Mrs. Lukkes; visits and treats from Mrs. Chillingworth, Ms. Duff, and her cute therapy dog Magnolia; Krispee Kreme delivery when the constipation ended and he could go off clear liquids; going with Papa to the driving range and bowling on several days when he felt ok and labs were up; watching his Arroyo basketball team play when he was in between meds and it was safe for him to be in the gym; getting an IPAD from one of this best buddies (Wow, that’s been helpful!); discovering the Minecraft Gameknight chapter books; setting up his science table; making his “solar rover”; visits from his old nanny Neri and some of his favorite “big cousins” including Jamie and Astrid; and lots and lots of cuddle time. This time is certainly teaching our family to cherish time together and life’s small moments and simple pleasures.