Day 15 – April 2, 2022
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 brings me to tears randomly and unexpectedly every single day. I’ve spent the past week staying up late researching leukemia and the varying sub-types, the implications of Philadelphia-like ALL (Philadelphia-like acute lymphoblastic leukemia, which is Harvey’s current diagnosis), DNA mutations and chromosome structures that are modified, proteins that are created as a result of mutations that could make it more difficult to treat this type of cancer, research studies that are open/available with hopeful treatments… I just can’t stop my mind. Today, I took a step back, reminded myself that we are in the first stage of treatment (induction), and that I need to slow down, analyze results that come in, and take it day by day.
As I touched on briefly before, another trying dimension of Harvey’s diagnosis is being away from our other two kids. If the currency of childhood is attention, then we are hugely in debt with Hattie and Henry right now. I spent part of yesterday and today with them at the house, and I can tell this is having an impact on them. Henry took my hand and led me to his room to sit with him whenever he noticed I wasn’t nearby. Hattie and I had a conversation about how sad she is we can’t all be together right now. This is the first time we’ve shared tears about the status quo. I think she was surprised, but relieved, to understand that I feel the same way. Our house just doesn’t feel like our home. An empty bedroom with a big blue car bed is a stark reminder of how different everything is now.
We took the time to grieve, but also found time to have fun and enjoy each other’s company. The twins and I made a run to Target on Friday to pick out a new “big girl bike” for Hattie. She chose a 20″ blue, gray, and purple colored Schwinn bicycle and has spent most of the weekend outside getting used to how it handles. Henry has thoroughly enjoyed being outside with Hattie and cousins Leo and Mylah swinging, sliding, and running without the need for snow pants and gloves. Steve & Jenny (uncle & aunt) returned as care providers Friday afternoon and we’re so thankful to have them here!
Another difficult dimension of this experience for me is, and this may sound terrible, receiving amazing love and support from friends, neighbors, and family. I have trouble accepting help. It doesn’t feel right to me. But know this is something I’m actively working on. I am so incredibly grateful and moved by the time, effort, thought, love, and resources people have selflessly put into supporting us. It has helped us in ways that I don’t even know how to convey with a full vocabulary. Arriving home, I was greeted with cards, books, food, kids toys, stories of the kindness you’ve shown our family… I’m severely behind in communication and thank-yous at this moment. I can’t wait to share with you what a difference you’ve made in our lives and to pay it forward.
Tonight, I returned to the hospital to give Lindsey a chance to head back home. Hattie and Henry need their mom. ❤️ Harvey is asleep a mere 4 feet away from me. He is experiencing the full side effects of his recent chemotherapy with extremely low energy and nausea. We’ve started noticing bits of hair collecting on his pillows and clothing. Another indicator that this is, in fact, really happening and not just a bad dream. I am starting to see that he’s excited to return to the look of his youth: “Bald as a baby” as he puts it. (Except he was born with a full head of hair!). I wish for him a healing night of sleep. Tomorrow, we will rule day 16 of this journey.
8:15 pm: I took a hiatus from posting today to spend some quality time with Hattie & Henry while Lindsey stayed with Harvey at the hospital. Lindsey is now on her way home to also get some quality time with our twins and hopefully a restful night of sleep. All is well here and I’ll post a more thorough update after Harvey falls asleep this evening. 🙂
