Day 33 – April 20, 2022

7:15 pm: Now that Harvey’s induction phase of treatment is officially done and we have full bone marrow test results, we are preparing to begin his consolidation phase of treatment. Today, we met with Harvey’s care team to get labs drawn and discuss his specific treatment plan for consolidation, which will include the drug ruxolitinib. In (sort of) layman’s terms, Harvey has mutations involving his JAK2 gene. This medicine will specifically target this mutation to help eliminate it and promote more effective killing of cancerous cells during treatment. This medication will be added to the plethora of other standard chemotherapy agents for this next round. As of today, we now have his treatment plan for consolidation defined, with our signatures on paper approving the plan.

We had planned to begin his consolidation treatment on Friday. However, his blood work today shows that his body is not yet ready to start. His ANC level, which is currently at .160, needs to be at least .750. This simply means that his immune system is too weak to start the next round of treatment. His care team will continue checking his ANC frequently (next appointment on Friday morning) to make sure we begin treatment as soon as he reaches the minimum requirement of .750. We are expecting he’ll be ready in days, not weeks, and we’ll post new information as we receive it.

Harvey is incredibly happy to be home and not at the “stupid hospital” or the “stupid clinic.” His words. He asked his nurse, Sarah, today: “Do you like being at this clinic? Because I don’t like being here!” His serious commentary often forces smiles and hidden laughter from care providers within earshot. As he warmed up to staff today, he asked, “Can you take me on a tour of this clinic?” Nurse Sarah jumped right into action! She let Harvey send his own blood to the lab via the pneumatic tube system (“the rocket launcher”), introduced him to all the staff, showed him where all the good food and candy is kept, opened up the big toy closet, and even took him into special rooms with fiber optic cables wired into the ceiling to look like a glimmering sky full of stars at night. Thank you, Sarah!!

When he’s not at the stupid hospital/clinic, Harvey spends time in our basement that we’ve transformed into his own personal, sanitized space. Our guest bedroom is now Harvey’s new bedroom, the family room is his personal play area, and our small bar area is now his kitchen. He also has his own bathroom with a shower. He will be mad if I don’t inform you that he does not like taking showers. He likes taking baths! That said, everything is almost perfectly set up for him. The rest of us occupy the area above Harvey’s new home. This has created quite a few challenges and has truly segregated us as we try to keep our current sickness away from him. Lindsey and I are downstairs frequently, but fully masked with hands washed for short periods of time. We’ve also completely sanitized Lindsey’s vehicle to use for transporting Harvey to and from appointments, while my van is used to transport the rest of the monkeys to and from school. We are doing absolutely everything we can to keep Harvey healthy as his immune system is non-existent. It’s truly exhausting, but already seems to work. Harvey is the only person in this house that has not had a cold!

We await the commencement of consolidation treatments knowing that this will be Harvey’s greatest planned challenge so far. He has been so brave out of necessity. There have been some truly ugly, hellish, scary moments that I haven’t shared here. Some that I’ll never be able to shake. All that I’ll never be able to understand from Harvey’s perspective. It’s such a helpless feeling. The battle for life in a cancer fight occurs on a molecular battlefield. As parents, all we can do is remain laser-focused on helping our boy and our family cope with the pain, the emotions, and the ugly reality of leukemia. The bone marrow results showing amazing progress have assured us that this isn’t all for naught. Without that, I’m honestly not certain I could cope with the next round of treatment. I never wanted any of this, but I will be eternally grateful we’ve made it to this point in time. It’s not nearly as dark here. To the 0.19% of detectable bone marrow cancer cells: We’re coming for you.