I originally wrote this post in June, then planned to edit it, get Chris to read it and maybe add a photo…however I ended up just getting into summer mode and never ended up posting it. So here it is, 5 months later, but I thought it was still worth sharing.
It’s been more like a slow letting go, or gradual stop than a sudden end. Although Sam finished chemo treatment in November, he still had some non-chemo meds (Bactrim/Septra) to take until the end of May. It’s so great to have him completely off medication now. He doesn’t have to swallow pills and we don’t have to keep remembering to bring them with us if we’ll be away. It’s funny because a few weeks before he finished taking Bactrim we finally figured out a great way to make sure he didn’t forget any doses: We put the four tablets for the weekend in a separate bottle. Doesn’t seem like rocket science but it was truly a flash of brilliance! Bummer that we didn’t think of that a couple years ago.
We have now begun the last section of Sam’s medical care. For the next five years he’ll continue to have blood tests and see his oncologist. Right now we’re still there every month, but that will be decreased as time goes on.
If When he hasn’t relapsed in five years he will be officially cured of leukaemia. Honestly, I do think of him as cured now, though I still pray health over him every day. I think for me there is the niggling fear of secondary cancers, or if something is a little off with a blood test that it could signify a major problem. But it is really not worth living in that place. Trust is a much better place than fear.
There’ve been some big improvements since Sam came off chemo:
Appetite Sam likes food again!! I knew chemo had affected his appetite but hadn’t realised just how much until these past few months. Now he’s eating so much more and actually enjoys food. While on chemo he’d often just look at the food on the dinner table and sigh/groan. I rarely hear that now!
Energy Sam noticed that in his Phys Ed class he can now run faster and for longer than he used to. I didn’t even realise that chemo was still sapping his energy. He’d had times of very low energy during treatment so in comparison he seemed fairly good. He was able to ride his bike and run around, but now he’s got even more energy for that stuff.
No more pills! Although he’d become a total pro by the time he finished, Sam was very happy to no longer have to take his meds.
And how do we feel? It’s strange – there is the relief and joy of him being done, mixed in with grief and even weird nostalgia. I’ve found myself revisiting a lot of the early memories and almost re-feeling it all again. I think at the time a lot was just so shocking and so unknown that there were times when I just didn’t know what to feel and shut down into numbness. Now I look back knowing there is a good outcome and yet feeling the pain and grief of so many situations. Chris and I were recently talking about when we’d travel 2.5 hours in to the hospital and we’d have to stop halfway and put Emla cream on Sam’s port so it would be numbed just the right amount by the time we got there. We’d learned the hard way that the effects wore off after a while. Just thinking about it I started to sob…even though that is such a small thing compared to so much of what he had to go through. I think it just hit home that it is not okay for kids to have to go through that stuff. Any of it.
There are also the good memories of the three of us listening to audio books on the way up to Brisbane, hanging out together in hospitals, going to the library and then for fish ‘n chips after a blood test…there were actually some good quality bonding times we got to have together that we wouldn’t have otherwise. There is a part of us that misses those times.
And through it all I know there is so much to be thankful for. Through the pain, grief, bittersweet joy and the unknown there are still times when I can look back and be thankful: for new relationships, for greater understanding of pain and loss, for feeling God with me and knowing he alone is enough.