Day 54 of Lochlan’s healing journey with nearhaploid leukaemia was a dark and rainy one. A perfect day for a cozy day in, curled up with movies, tea, and time together as a family.
Lochlan really worked on his movement and mobility today, and decided on his own to start doing squats to build up his leg strength again. His first goal is to be able to stand up and sit down without having to use his arms to push him or steady himself. His second goal is to be able to bend into a deep squat, and sit down on the floor without using his hands/arms. He’s building confidence right along with building strength slowly and surely.
As per tradition here at our house the kids watched the first Harry Potter Movie (we do one a week until Halloween) and got in the fall spirit. They asked to start decorating for fall, and I agreed…. But they didn’t just take out the fall decorations, they took out the Halloween ones too. So even though we have almost two months until that special day, we decided to size the day. We talked about how Lochlan and I won’t be home for Halloween this year (we’ll be in the next province over for 28 days as he receives an experimental immunotherapy treatment and have to be near the children’s hospital for it), but we still will do all the usual things we do. We’ll just do them earlier this year.
Overall the kids were in a great mood and really spent time being brothers again. It makes my heart melt to hear their not-so little voices giggling and chatting together. They’ve been glued at the hip since Lochlan’s as born. So much more than brothers… best friends too. Watching them have to be apart from each other so much over the last few months has been heartbreaking. I am finding gratitude in the days like today that are “normal”, and “just like we used to be”.
Life these days feels like a weird sort of purgatory where we just are sort of existing. I try to enjoy each moment, yet have to plan and prep for life around treatment days and trips away. I find it hard to look back on how life was pre-leukaemia… it just shatters me. So instead I simply try to focus on the day. And take things one step at a time.
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