I am so thankful to have this way to communicate what I’m feeling but I’ve definitely struggled with what to write over the last couple of weeks. I am not creative enough to think of another way to express how entwined my fears and concerns for my daughter are with everyday life… and, because these fears and concerns consume a significant portion of my thoughts, I write nothing..
Cailyn had her follow-up MRI last Friday. The preliminary report documented an increase in both of the dimensions being followed. Obviously this was NOT the result we wanted but I wasn’t truly surprised after seeing that, in her September MRI, the tumour was more enhanced. It remains “avidly enhancing”, and the size of the enhancing part has increased by the same amount from September to November that it had from June to September. Suffice to say, the preliminary results are troubling. I am anxiously awaiting information from Cailyn’s oncologist. A complete understanding of potential next steps isn’t possible until we hear about the tumour tissue testing results from New York University… ugggghhhhh.
Over the last week and a half, the girls and I have been “detoxing”. It has been a welcome, sometimes challenging, diversion with modifying meal plans, chopping kilograms of veggies and stocking up on “clean” food. The idea was initiated by the “volleyball mammas” and when I signed on, Cailyn thought that she’d like to participate. The rules were, “no sugar, dairy, grains, beans, legumes, caffeine, alcohol”. The obvious question was, “ok… what can we eat?”
Cailyn followed the rules exactly, with only one deviation… we got together with friends for dinner last week-end and she helped one of her friends make paella. So, the deviation was that we had rice for one meal… boy, that paella was fantastic. Her will-power was exceptional when she volunteered for a bake sale on Saturday for the volleyball team, and sat in front of a table of goodies for over 10 hours, without eating any of it! Lauryn just signed on for the “no sugar” part of the detox. Amazingly, none of us felt like we needed to snack at night, and we never experienced being uncomfortably hungry. Cailyn wants to continue to have a certain number of detox days per week… I suggested 2 days and she suggested 4 days… I asked her if we could compromise 🙂 !!
Anyway… waiting, waiting, waiting… trying to control what we can in the meantime. Will let you know what’s happening when we know!!