10:30 pm: I arrived back at the hospital just in time to catch Harvey waking up, eating, chatting casually about anything that comes to his mind, and sharing his secrets with me. He took me for a walk to show where they “hide” all the good snacks around this joint. His stomach is full and my heart is full. He also played bingo today, which is made possible through a live television production. I appreciate the work that goes into this and can’t wait to play with him!
As we wrap up day 5, I made a quick video to share a few thoughts from my perspective on topics that seem to be recurring themes for families on this similar journey. More updates on our little boy to come. Goodnight!
5:30 pm: I’m preparing to head back to spend the night with Harvey and Lindsey at the hospital. No major updates since Julie gave us the wonderful news about Harvey’s blasts dropping to 0. The best things in our family tend to occur on rainy days. We picked up .11” today and 1.01” yesterday. 🌧 He’s had a few more nausea episodes today and remains weak/tired. Nonetheless, our little man continues to eat, drink, and sleep.
11:15 am: Julie, our wonderful nurse practitioner, informed us that Harvey’s blasts (the young, immature cells that help leukemia cells grow and accumulate) that were at 3% yesterday are now at 0%. *Crying intermission for me* Leukemia patients that arrive with white blood cell counts as high as Harvey (210,300 on Friday, March 18th) typically take 1 week or longer to achieve a blast reading of 0. A testament to the effectiveness of the first round of his treatment. I’m aware of the challenges ahead for him. But I’ve lost so much sleep worrying about the effectiveness of his treatment regimen. He had a few abnormal protein markers (as discussed in a previous post) that can sometimes mean a longer and more aggressive treatment to see results or, in some cases, not see results at all. I’m going to close my laptop, close my eyes, and just be in this moment. More to come.
10:00 am: Good morning & happy Wednesday! Today is a bit of a different (normal) day for me (Joe typing these posts here). I am with my daughter, Hattie, at an appointment at Mayo Clinic in Rochester, MN. Nothing bad: We’ve had this appointment scheduled for months. I thought it would be really good for us to spend some quality time together and attend an appointment in an effort to feel normal again. I never thought I’d be so happy sitting in a waiting room with my daughter. Something that used to seem inconvenient and even a waste of time is now a magical, cathartic experience for me. I’m a different person than the last time I’ve been on the Mayo campus.
At the hospital with Harvey this morning is Lindsey and our family (friend), Cindy Bisbey. You’ll likely see and hear about Cindy, her husband Scott, their 4 amazing kids, and Cindy’s mother (whom Harvey calls “Yiey Yiey,” Cambodian for grandmother) in our updates frequently. The Bisbeys have watched Harvey in their home weekdays while Lindsey & I worked for over 3 years. This is a daycare arrangement that turned into new family. Harvey is one of their own. He walks right into their house when we visit, helps himself to anything in their pantry, and acts as though he’s in his actual home. And he is. Add that to the list of things for which I’m eternally grateful.
I’ve received updates from Cindy & Lindsey that Harvey had a wonderfully restful night of sleep. He was eating a full breakfast of, at his request, penne pasta with alfredo sauce when I talked to him via facetime 40 minutes ago. This kid cracks me up! He was sporting his Blippi blue and orange hat that the Bisbey family bought for him at last week’s show in Minneapolis. Full disclosure: I just took a 5 minute pause to cry after typing the previous sentence. A week ago, I had absolutely no idea that this hat would be more than a souvenir. In the coming weeks, it will undoubtedly become a fashion accessory that hides the evidence of chemotherapy where Harvey’s thick, full head of hair should be. This is just so hard. But I am elated to see our boy so awake, alert, and happy this morning.
I close my eyes and can feel the love and support of so many people. It’s a feeling I’ve never known until now. I want to personally tell you that we see every message that is sent to us, no matter the medium. Facebook replies. Blog post comments. Text messages. We see them and they’re wonderful. I can not wait to have the time to reach out to each and every one of you. Please know that your words are finding their way into our hearts even though there’s likely no reply, no confirmation that we’ve read them. You have made a lasting impact on us in these uncertain times and you likely don’t even know it. I’m here to ensure that you know. ❤️
So, with no new health information to share as of yet today, I’ll instead share a few of the videos and pictures I’ve received from my family this morning. It’s already Wednesday, day 5. We continue moving forward, together.