10:30 pm: We’ve been in survival mode since arriving home from the hospital with Harvey last Wednesday. Lindsey and I both have terrible, achy colds that have kept us masked, not sleeping, and distancing from each other. We’ve been especially vigilant around Harvey, only getting close to him when absolutely necessary. He has no immune system right now. It’s been hard enough not to spread this cold to him, but not being able to sleep by him, kiss him, hold him, and be at his side for more than minutes at a time is torture. I’m starting to feel much better this evening and I’m so incredibly excited to get back into everyone’s personal space again soon! I’m hoping Lindsey also starts feeling better any moment now.
Harvey is happy to be home and, thankfully, has shown no signs of illness. Hallelujah! He does continue having unpleasant side effects from his medications and chemotherapy. It’s now a struggle getting him to eat. What he does eat tends to come back up. Appetite loss will likely be an ongoing concern through his next stage of treatment: Consolidation. Later this week we will meet with his care team to review bone marrow test results and establish a treatment plan for his consolidation stage. Our hope is to get Harvey into remission soon. While it’s possible that the first round of treatment that just ended, called induction, has put him into remission already, it’s more likely with his type of ALL (Philadelphia-like acute lymphoblastic leukemia) that he will be MRD+ (minimal residual disease positive, meaning he is not in remission). This will lead to a more targeted, aggressive treatment plan. This week of test results will be huge and will impact every decision made going forward. Sickness, emotions, sleeplessness all aside, we stand strong for Harvey and our family. But this will be a trying week for us.
Being a parent in this situation, I now realize how difficult this has been on our entire family. Especially hard on our twins, Hattie and Henry. They’re afraid to fall asleep knowing we may be gone again when they awake. Henry absolutely loves school. But for the first time last Thursday, he was crying in the school office asking for “mom” and to “go home” on his communication device. It’s heartbreaking to know that my time invested in one child is automatically neglect for another in a time of crisis. Being back home together has been everything. That said, we can’t thank our family’s care providers enough for being there in our time of need. I can’t fathom surviving the past month without you!
We hope you had an amazing Easter! With all credit to Lindsey, we somehow managed to keep our family Easter festivities in motion, albeit modified. Gifts for the kids, Easter egg hunts, dyeing eggs, and a home-cooked ham supper all comprised our Sunday. We’re so incredibly blessed to be back in our home together. Overwhelmed, but blessed. This week we look forward to some rest, recovery, and family time together before we’re inevitably introduced to our next set of changes, challenges, and unknowns on Thursday/Friday. I’ll purposely have a lack of updates until later this week to put my time elsewhere. But as soon as we get any updates on Harvey, I’ll share them here. Thank you so much for checking in and keeping us in your thoughts. ❤️