We've been home for a little over two weeks now, and I've managed to keep very busy. I scheduled Collin's therapies to start again in May, because I wanted to give myself and Collin a little break from constantly being on the go. I knew I had to get caught up on things around the house, and that would be easier to do it I wasn't constantly running to various appointments. During the four days every week that Collin and I were home between trips to NY in March, I was so physically, mentally, and emotionally burned out that I wasn't doing much around the house when I was home.
Then the need to get caught up turned suddenly turned into an overwhelming urge to spring clean and purge, and unfortunately it didn't pass. I think I want to feel like I have control over something in my life. The team at Sloan-Kettering requested Collin's follow-up MRI to be done on March 2, but the schedule isn't made far in advance and they won't let us know until almost the last minute when we have to be there, so I feel like I'm just waiting. I'd be lying if I said I wasn't worried; I try to have faith that the 3F8 treatment worked to kill off any remaining cancer cells in Collin's body, but the last time he was completely off treatment, the cancer returned in just under two months. That's one of the hard new realities since cancer entered our lives in 2010 - and recurred in 2011 - no matter how well Collin is doing, fear is always lurking. So, maybe I'm trying to channel my nervous energy into something useful, and trying to get things ready for whatever comes next. The silver lining is that I'm starting to feel like I have a new house. It's getting cleaner and more organized than it's been in quite a while!
Collin is feeling well and is enjoying being home. We're still dealing with diarrhea; he was tested again by our oncologist and was still positive for c-diff, so she put him on a stronger antibiotic for two weeks. His fingers were accidentally closed in the front door on Easter Sunday, but they were x-rayed the next day and thankfully weren't broken. His latest obsessions are Blue's Clues and Barney. He's been "helping" me spring clean. He loved hunting for Easter eggs, and plays with Neya every minute that he can. She doesn't get out of school until 3:45, but every day around 1:30 Collin starts asking if we can pick her up yet. When I tell him it's too early, he pleads with me. Then when we do finally pick her up, he tells her "I so excited see you!!" It's very cute.
Over the last few weeks, there have been too many kiddos who've earned their wings. It's truly heartbreaking. I yearn for the day when no parent has to watch their child suffer because of cancer, see their lives and the lives of their children permanently altered because of cancer, or mourn the loss of their innocent lives because of cancer. I yearn for better treatments. I yearn for a cure. I really hate cancer.
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