Day 16 – April 3, 2022

9:40 pm: Harvey and I had a quiet Sunday together. We snuck in 4 walks together (they want at least 3 daily). I know. Overachievers, aren’t we? Selfishly, I love our walks that take us into the family waiting area which includes a view of the Minneapolis skyline and, more importantly, coffee! As the Keurig coffee maker starts pumping out hot water and the smell of coffee hits the air, Harvey can be heard saying, “Mmmmm. That coffee smells so good!” The kid loves the smell of coffee! ☕

Nurse practitioner Julie checked in with us late this morning. Harvey’s low glucose earlier today may be attributed to coming off steroids. We’ll continue to monitor it for the next few days. The bigger story is his ANC (absolute neutrophil count) is at 0. ANC refers to the body’s ability to fight off infection, especially bacterial. Concisely, he has no immune system right now. We are being fully vigilant in everything we do. Washing hands. Masking. Any sickness or infection right now would be a big setback for him. If his ANC doesn’t rise, he won’t be able to go back home within a week. As hard as it is to turn visitors away, we’ve certainly reached that point.

I’ve noticed Harvey’s energy starting to return today. His appetite remains fully intact and he only complains of joint pain when we go for walks. I’m thankful that he’s not going stir-crazy being here for 16 days. We continue to find new activities, games, and topics of discussion to pass the time when he’s not asleep. Harvey is navigating the challenges of treatment day to day well, overall, but my mind is always thinking long-term.

I have never wanted anything more than I want this: At the end of his induction period (about 2 weeks from now) I want his bone marrow samples to come back MRD (minimal residual disease) negative. While this isn’t likely, it is possible. Being MRD negative is especially encouraging for patients with blood cancer, like Harvey, because it means that even the more extensive tests detect no cancer cells. Studies suggest that being MRD negative after induction is associated with longer remissions and likely longer rates of survival. (Source: Leukemia & Lymphoma Society)

I share this information so that you know exactly what’s on my mind as we navigate through the day to day challenges. My mind is locked in long-term, focused on remission and a cure. This is what keeps me awake at night researching and learning more. I’m trying to be better about focusing on each day. Day to day. And today was a good day.

10:30 am: Harvey had a great night of sleep, but woke up with a very low glucose reading (44). We fixed that with a few quick boxes of apple juice and yogurt. Typically, steroids tend to keep glucose levels elevated, so having a low reading isn’t considered normal. He has continued to take his blood pressure medications orally, and last night’s dose prompted an emesis, bringing up a good portion of the food he ate yesterday afternoon/evening. I’m hoping that had something to do with this morning’s low glucose levels. We’ll need keep a close eye on it.

This boy continues to have a fun appetite. Breakfast consisted of a hotdog and chicken strips. He ate every bite! We wiped the ketchup from his mouth, untethered him from his IV drip, and took a walk without any medical equipment trailing us! He is currently lounging on the sofa/bed in our room and enjoying the freedom. Today should (hopefully) be fairly uneventful. Lindsey is back at our home spending time with Hattie & Henry as we welcome back this week’s caregivers: Grandpa Dale and grandma Lisa Goldade. You brave souls! Harvey told Lindsey that she is “the best nurse” as she’s been providing extra care for him. ❤️ I think Harvey has a new found appreciation for mommy’s profession. And she’s helped teach me quite a few things from providing medical-quality care to proper medical terminology. Instead of saying “he vomited and had a big poop,” I now say “he had an emesis and a large, formed stool.” As Harvey says, “Manners matter.”

I’ll end our morning update with a clip showcasing a skill that Harvey recently acquired. He was proud to show me he knows how to check the weather! His next lesson will be on (lack of) accuracy in weather forecasting… 😄