Harvey’s Journey Journal

5:45 pm: Harvey had another routine procedure today. Each one breaks my heart and is difficult. It never feels routine even with our amazing care team. Here is a look into today’s procedure and a glimpse of Harvey’s new normal.

11:00 pm: Harvey’s procedure went well today. He was put to sleep (thanks, propofol!) and had chemotherapy administered intrathecally at 8:30 am. Typically, he’s only asleep for about 15-30 minutes, but wakes up with another battle wound on his back. This afternoon was the first time he’s complained of back pain and he now has medication onboard for pain management….

11:30 pm: Happy May! Today marks the first full week of Harvey’s consolidation stage of cancer treatment. Each day has started to feel more monotonous than the next: Scheduled medications, personal care, appointments, and cold/rainy weather. We’ve been mindful of trying to introduce new activities, games, and ways to stay active to keep this all (somewhat) exciting for Harvey. But…

7:00 pm: We are now 3 days into Harvey’s consolidation phase of cancer treatment. He is receiving 3 different chemotherapy medicines per day (consisting of 9 pills and 1 infusion) as well as medicine for nausea and elevated blood pressure. With the help of a daily in-home nurse visit, this full gamut of medications can be given right at home….

10:30 am: Harvey is awake after his spinal tap procedure. He is now getting hooked up for his next dose of chemotherapy. I took a few pictures and videos of what these visits look like for us behind the scenes. 8:40 am: We’ve arrived at the clinic. Harvey is in his procedure room preparing to receive a spinal tap and…

6:30 pm: Today was supposed to be Harvey’s first official day of the consolidation phase of treatment. For some reason, our scheduled procedure for this morning was canceled over the weekend. We instead met with physical therapy to focus on regaining strength lost from the first rounds of treatment (induction). We then reviewed latest blood results with Dr. Miller. Harvey’s…

10:30 pm: Harvey’s morning appointment went well. His ANC level rose to .500, up from Wednesday’s reading of .160. An ANC of .750 is required to continue his treatment and his medical team is confident he’ll continue trending up over the weekend and will reach .750 by Monday. Therefore, his next procedure is scheduled for 7:30 am Monday morning and…

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,…

7:45 pm: Harvey simply amazes me. He is solution-minded and logical. He absolutely HATES taking numerous crushed pills orally every day because, without a doubt, they have a horrible taste! After a quick discussion with mom this morning, he learned that it’s possible to swallow them whole without tasting them. And that’s all he needed to know. As of today,…