10:30 pm: Chemotherapy and the concoction of medications Harvey is receiving has unquestionably impacted his energy and mood. Our cuddly, active, loving boy is being overcome with feelings of restlessness, longing for home & siblings, and anxious to get back outside. Back to school and swimming lessons. Back to normal. We continue to monitor his SpO2 levels and his slight labored breathing. He continues to have an appetite, albeit much less than his typical diet. We passed the time today playing Candy Land (he won fair and square!), walking through the hallways, blowing bubbles, playing with his favorite matchbox car ramp toy he discovered in the community playroom, and watching “Blippi the Musical.” I am so incredibly thankful that we were able to attend the show in-person last week at the State Theater in Minneapolis. It turned out to be one of the last outings we’ll have with Harvey for the foreseeable future.
As our family navigates each day and its unknowns, I find myself emotionally overwhelmed unexpectedly. Making a phone call to cancel Harvey’s Saturday swimming lessons. Writing an e-mail to let his school know he won’t be returning from spring break. (Thank you so much to our Modern Montessori family: Miss Rhonda, Miss Melissa, & all the staff/friends that have made a lasting impact on Harvey: This is only goodbye for now.) And speaking of thank-yous: Thank you so much to our friends and family for their love and support in our new and uncertain times. I’m looking forward to sharing the details of your greatness & impact in upcoming posts.
I’m looking over at my 4 year old as I wrap up today’s last update. He is tucked in for tonight and is sleeping more restfully than the previous two nights. I will keep the numerous daily updates flowing and work on publishing our details from day 1 in the hospital and the background of how we ended up here. But for now – goodnight! One day at a time, we move forward.
12:30 pm: Harvey wrapped up the morning with walks, playing with toys, and getting rides in one of his (many) favorite toy cars. He is back asleep in bed, but tossing and turning restlessly. I’ll take low quality sleep over no sleep. I’m going to try to catch a nap myself.
9:00 am: Harvey managed to sleep another few hours! I will continue posting updates here and am working to capture the story of how we arrived here 2 days ago. It all feels like a bad dream.
4:30 am: I scooped Harvey into my arms and settled into our rocking chair around 2 am. He slept in my arms peacefully for nearly two hours! He’s now awake and watching train videos on his iPad. I’m thankful Lindsey was able to get a little sleep at the same time.
1:30 am: A sleepless Sunday morning is underway after Harvey’s first round of chemotherapy 10 hours ago. He is physically and emotionally exhausted, but agitated and restless from medication. Currently, his SpO2 is lower than we’d like (around 90%) and we’re supplementing him with blow-by oxygen as he attempts to sleep. Lindsey and I are doing everything in our power to get him to sleep comfortably for short periods of time.