10:00 pm: Harvey had an uneventful day, relaxing and playing with mom at the hospital. He is currently winding down with a bowl of Fruit Loops and watching ”Mickey’s Twice Upon A Christmas” before bed. Our pantry at home is typically stocked with Cheerios, Kix, and Corn Flakes, but not Fruit Loops (or other sugary cereals). I can only assume he will challenge the status quo in the future when we compile grocery lists.
I had a busy day giving all my love & attention to Hattie and Henry at home. Hattie was my big helper around the house as we cleaned the basement, then moved Harvey’s bedroom from upstairs to the basement. She is so excited knowing she’ll likely see him again within a week! Tomorrow morning we’ll say goodbye to grandma & grandpa Goldade and transition back to a schedule that includes either Lindsey or I at home with the twins. We are so incredibly grateful for our gracious caregivers who stepped in to help us over the past 3 weeks. We have so many people to thank. Today, I got a real look at the letters and care packages waiting for us at home. Some have been likely sitting here for weeks. When we are able to bring our boy back home from the hospital, we are going to look at every single one together as a family. We love you all!
11:00 am: Good morning! Harvey is completely owning the day so far. He slept in until 9 am, had part of his chicken strip and french fry breakfast, went for a walk, and is now playing toys in the room. His glucose level continues to trend positively (74 this morning) and his blood chemistry has also been trending well (platelets, red blood cells, ANC). This will likely change again due to his chemotherapy treatment yesterday. He’s been tolerating his oral medications well so far and especially likes the snacks we mix in with the crushed pills. He will now demonstrate how to get every last drop of yogurt out of the packaging:
I’ll be going back home shortly to begin preparing our house for Harvey’s arrival (hopefully sometime this upcoming week). We are going to transform our basement into his living area for a while, making sure his downstairs bedroom is setup with favorite toys and activities. Every square inch will be cleaned and sanitized. He’ll have little or no immune system, and we hope to avoid more emergency hospital stays in the future (outside of the planned ones for treatments). We have no idea what our new routines and life will look like, but we’ll continue to do our very best for the kids.
I’ve been collecting mail and deliveries for Harvey and readying them at home. There is so much he hasn’t seen yet! I can’t wait to share all your love with him and look forward to posting videos and pictures of it all. First things first: Time for me to go home and clean, tear down, move, setup, and configure our new living arrangement.
12:00 am: Hattie & Henry had an amazing surprise back at our home Friday evening. Their teachers & staff from Spero Academy showed up in a parade-like fashion to surprise them! They brought bags of thoughtful, custom-made gifts to help them cope with the changes underway in our family. Lindsey and I have only seen pictures and videos from afar that I’m sharing with you below, but we are completely in awe of the love, care, time, effort, research, and miles that went into making this possible. Hattie, Henry, and our family will never forget and will forever cherish what we witnessed Friday:
Spero Academy is the reason we moved from Rochester, MN to our current home in the twin cities metro. We wanted Hattie and Henry to have the best resources available as they entered kindergarten with special needs. As you may have guessed, we absolutely made the right decision. To our Spero family: We love you and everything you selflessly do that makes a lasting impact every day. Thank you so very, very much for what you’ve done and continue to do for us and countless other families. Hattie will be telling the story of what happened last night to anyone willing to listen for years to come! ❤️
Here at the hospital, we had less of an exciting evening. Harvey kept his energy for most of the day, but lost some of his food due to chemotherapy induced nausea. Thankfully, the transition to oral medications is going better than anticipated. I’ve read horror stories from parents of kids with cancer and oral medications. I hope we can keep this momentum going. Harvey and Lindsey are soundly sleeping just feet away, and I intend to join them shortly. As we anticipate transitioning back home within the next week (hopefully), I’m looking forward to having time to thank everyone who has supported us during these not so fun times. The past 3 weeks have been hard, but I can’t imagine having to do this alone. I believe our most challenging times, especially for Harvey, are ahead of us in the next stage of cancer treatment called consolidation. But I would love to be wrong! I made a career out of it in my past life as a meteorologist…