I’m back in Tampa today since I’m doing the Cure on Wheels 100 mile bicycle ride tomorrow morning. (You can still donate to that if you want, although it doesn’t go to Neuroblastoma specifically – proceeds support our local children’s hospital and Moffitt). Since the riders have to be there by 6am, it wouldn’t make much sense for me to leave Orlando at 3 in the morning to get there, and Robyn was gracious enough to let me sleep in our house last night and tonight so I’ll be [slightly] rested for the ride. Thanks, babe. I meant to be training this whole past month but obviously circumstances have not allowed much of that, so as my friend Kevin said, I’ll be “high on motivation, low on preparation.”
Being home is weird. I haven’t been home in almost a month. Everything is in perfect working order here. All the people who have been helping out with Charley have been also keeping our home in tip-top condition and it’s beautiful. I don’t know how we can ever repay – it humbles us to see this amount of help. The calm and peace of the waterfall in our back yard contrasts this feeling in my mind of being… off kilter I guess. I don’t know how to describe it really, but we just sit in limbo constantly with an unanswered question. I suppose that’s how life is, but this question of Ezra is wearing on us. Each day is wholly different from the previous – even if it’s the same, because now it’s the same a day longer. I feel apprehensive. I’ve been sitting staring at the waterfall for an hour just feeling all this. It’s such a gorgeous day and it feels strange to see so much beauty while feeling so much pain. I have no point, really, I’m just trying to pen down this feeling. It’s literally elation one minute slammed to deep hurt in the next, and everything in between.
We’re not really sure how Ezra is doing at the moment – there are a lot of factors in play. Yesterday he started talking a little bit again – he woke up and said “momma” twice. When Robyn came to the bed, he asked for juice. He didn’t drink much, but it’s something. Vivian, Robyn’s mom, and Tanya, her sister came by to hang with Robyn while I am back in Tampa. For a few hours they hung with Ezra while Robyn and I left to drive around and pretend like we have a normal life. Vivian said Ezra was again asking for juice, and drank a decent amount. That’s a big step!
At the same time, his liver is still extremely enlarged and not going down. They did an ultrasound today, so we should know more soon on that. It could be a massive tumor, or it could simply be retaining fluids. This can be a sign of a few things, but we’ll wait to see until we know more. It’s painful for him, and he keeps making little whining noises for hours on end, even with morphine, Benadryl, cartoons, my guitar playing, and Robyn and I hugging and kissing on him. That’s a sound that’s hard to listen to for hours knowing you can’t address the issue at the moment.
Charley looks great and he is growing like crazy. He is learning to sit on his own, and will most likely no longer need oxygen or the apnea monitor after his appointment in early December to check progress.
These are the best of times; these are the worst of times.