10:15 pm: Harvey had a day of tough side effects including vomiting, tachycardia (high heart rate – 150 bpm while laying in bed), and low glucose levels. While it seems our care team have seen this all before, it’s another thing we worry about right now. He is still tired, but more energetic when he is awake. My fun, loving, playful boy is back at times. Tonight, Lindsey is staying with him while I returned home to spend time playing with and loving up on the twins, finish taxes, and catch up on medical/insurance paperwork. Guess which one of those was most fun?
I’ll check back in tomorrow morning from the hospital. I’m hoping my boy gets plenty of sleep tonight and the side effects subside. We would love to see his glucose continue to trend up, hopefully above 60 when he wakes up in the morning. We are 10 days away from Harvey’s next bone marrow test. I hope that he is one of the few that come out of induction (the first round of treatment) being MRD (minimal residual disease) negative. That would really set the stage for better outcomes in the future. It would lead to a better prognosis. It’s hard to sleep. This is all I think about.
12:15 pm: Harvey had a restful night and a rather active morning of playing and walks. His energy is slowly coming back and we’re even beginning to see glimpses of his real personality return now that we’re steroid-free! Here’s a sample of that personality from last night before bedtime:
Harvey continues to have low blood sugar when waking up in the morning (56 today) and he currently has no immune system (ANC is back to 0). But we’re so grateful he’s able to sleep, has a great appetite (even if it’s primarily for hotdogs and cheeseburgers), is strong enough to get out of bed and walk (sometimes if only for moments at a time), and he continues to find new activities to keep himself entertained. This week we’ve been keeping an eye on his platelets (currently sufficient), red blood cell count (low), glucose (low), and his ANC levels (low) to determine when we might be able to return home. As enticing as it sounds to break out of here, we need to make sure he is stable before we plan to return home. He will likely need another blood transfusion of red blood cells today or tomorrow, and we hope his glucose levels continue to trend up as they have the past 3 mornings: 44 Sunday, 49 Monday, 56 today).
I’m on a lunch break from work and walked into a peaceful room of resting family. ❤️ I’m going to show myself back out and let them continue to get much needed sleep. Thank you so much for checking in!