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,…
9:45 pm: Technology can be amazing. (The lack of technology in certain aspects of our lives can also be amazing!) Each of our kids have iPads. They are configured with settings to limit excessive use of entertainment apps, promote learning and exploration (checking the weather, researching places on the globe, taking pictures, etc.), and to use as a sound machine…
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…
10:45 pm: There are so many dimensions of difficulty baked into the situation we find ourselves in right now. I’m really seeing the effects that Harvey’s diagnosis is having on our entire family, but I feel guilty saying this isn’t only 100% affecting him. This is his hell, and there’s nothing as parents we can do to help him. This…
1:30 pm: I’m spending the day with Hattie & Henry, so there may be a gap in updates today. I checked in with Lindsey and Harvey a little after noon: He is having a rough day with intermittent vomiting. This morning, he had an x-ray of his stomach to hopefully help determine why it is so distended. We found out…
7:40 pm: Harvey & Hattie were chatting via FaceTime tonight. I was recording them to capture the cute moment they were sharing (although Harvey was slightly moody). I had to abruptly end the recording because I was breaking down behind the camera. Hattie: “I love you, baby. I’m just… It’s ok, buddy. I’m sorry you don’t feel good.” Harvey, after…
8:45 pm: Harvey is asleep for the night (hopefully). After his “worst shower ever,” we made some popcorn and watched “The Polar Express.” Another one of his favorite movies! (If you’ve ever watched the movie, you might be a little creeped out by the animation. It has to do with the uncanny valley theory, where a high amount of realism…
5:00 pm: Speaking honestly, it’s been a really hard day. We met with Dr. Miller and nurse practitioner Julie late this morning and learned that Harvey’s initial genetic testing results arrived. I’m going to be as concise and (hopefully) accurate as possible with the overwhelming amount of information we received. Indications are that Harvey has Philadelphia-like acute lymphoblastic leukemia (Ph-like…
8:00 pm: Harvey had a low-energy day. We attempted to go for a walk a few times, but his knees are starting to hurt and we’re having to carry him most of the way. This pain is to be expected with the chemotherapy drugs he’s receiving. He even turned down visiting the playroom (which he loves!). Nurse practitioner Julie stopped…
10:00 pm: Lindsey spent the afternoon and evening with Harvey while I ran home to see Henry and Hattie. Grandma and grandpa Goldade had been their caretakers since Harvey’s diagnosis on March 18th. We said goodbye to them today and welcomed our family friends, the Bisbeys. Hattie was so excited to play with her friends, she actually told me to…
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