Day 118 – July 14, 2022

10:00 pm: Thank you so much for your comments of love & support today – We love sharing them with Harvey while he’s going through treatment! ❤️ He had a few rounds of vomiting late morning and early afternoon, but otherwise everything has been going well. He is currently receiving a continuous 22 hour infusion of methotrexate and will be monitored to determine how his body is responding to and metabolizing it. This is the primary reason for our hospital stay. Harvey is unquestionably happy to be back with his friendly care team, eating snacks on demand, and playing with the variety of toys found here at Children’s Minnesota Hospital. What a blessing not to have him dread coming here! We’re winding down for the night a bit late thanks to his long afternoon nap. We are incredibly grateful that Harvey is comfortable, happy, and strong tonight. We are so proud of our fighter! …and our comedian. Tonight, while playing the board game Life, a pink game piece fell out of his car while moving spaces. He immediately said, “Uh oh! My wife fell out of the car. Guess I’m not married anymore!” I was scolded by Harv for laughing too loud during this serious event. Shame on me!

10:30 am: The procedure is finished, Harvey is awake, and breakfast (brunch?) is underway. He is motivated to finish his food so that he can transfer to his hospital room. I’m so grateful that he doesn’t dread hospital admission! We’ll hopefully not have notable side effects from the high-dose methotrexate he received. *fingers crossed*

9:30 am: Harvey has been given anesthesia and his procedure is now underway. He’s excited to get it over with so that he can be admitted to the hospital (where they keep all the fun toys!).

5:45 am: We’re up and at ’em this morning. Today, Harvey begins his next round of cancer treatment: Interim maintenance 1. He has a 7:30am procedure to receive a round of chemotherapy intrathecally (injection into the space between the layers of tissue which cover the spinal cord) and a much anticipated bone marrow biopsy that will determine if he’s in remission or not (results in the next week or two). He’ll then be admitted to the hospital immediately after this morning’s procedure. For the next 63 days, he’ll have more procedures to inject chemotherapy intrathecally, intermittent IV chemotherapy, and nearly daily oral chemotherapy. Thankfully, this round doesn’t include any steroids or rylaze shots. Silver linings, right? We are expecting this hospital stay to last a handful of days, possibly a week, as he receives his first injection (of four) of high-dose methotrexate chemotherapy.

SInce our last update, Harvey’s immune system has recovered a bit and his energy returned. It’s been quite a while since he’s been this playful and energetic, reminiscent of days leukemia wasn’t an active part of our daily vocabulary. I’m sad knowing the chemicals that will meet his veins today will steal that life in his eyes away from him again for awhile. This past days a have been a gift. I wish Lindsey and our twins had been home with us this week. Henry continues to have nearly full-body rashes from parvovirus/fifth disease and we’ve kept him isolated from Harvey. We can’t wait to be together under the same roof again!

More to come as our brave boy begins day 1 of interim maintenance 1…