We had a few easy, uneventful months while Léo was stable in maintenance; he was back to himself, happy and energetic. We just had to make sure he was taking his medicin properly. When we went to San Diego at the end of June we could sense that he was a bit more tired, as he couldn’t walk for too long and wanted to be carried pretty much all the time… sure enough, at the next check-up early July his ANC dropped to 560 (from a solid 1,200 for 3 good months). We were really surprised and were told to cut the chemo dose by half, which we did. The week after he was down to zero, completely neutropenic and had to be kept at home… a step back that reminded us a little too much about last year! He was extremely tired, passed most of his time on the couch being uncomfortable and experiencing strong headaches. Poor little one, it was so sad to see him like this. 🙁 We stopped all meds obviously and were told to come back a week after (i.e. yesterday) and to get ready for a bone marrow biopsy on the Friday of that week if the counts were still low. It was so hard, we feared relapse even if we could tell that Léo was getting better pretty much every single day in the middle of that week of waiting. Fortunately the counts were up again yesterday, back at 1,000 and our little one is now feeling just fine, although still a bit tired and cranky.

They believe he became immuno-suppressed by the accumulation of his oral chemo meds. I guess this will happen again, but hopefully not too often! Right now he is taking only a quarter of the doses, and we are scheduled to go back next Tuesday for his monthly treatment: the last LP of the first year of maintenance! We are moving forwards, but geez, what a bumpy road this all is!

To celebrate the good news after these intense moments we will be going to Catalina Island for a few days over the weekend. We also went to the Science Museum yesterday and Zimmer Kids Museum today, along with Margaux: the kids had so much fun, it felt so good! 🙂

Coming up: 2 more months of trying to find the right dose again before we start the second year of maintenance in October with only 4 lumbar puncture per year.