Too much excitement just might kill me!
After an excruciatingly long wait, we now have the results from Monkey’s latest MRI. His tumor has continued to shrink – in fact the radiologist told his oncologist that if they didn’t know where to look, they wouldn’t have been able to see anything at all. His doctor was thrilled, and said that his tumor is responding exactly the way they hope for. So while they obviously can’t give guarantees, they are very happy with the way things are going, and the further we get from the end of treatment, the less likely a relapse is. The doctor said this first year is really the key, and we’re halfway there.
(This doctor also just had his first child – a son, who is now 2.5 weeks old. Is it weird that I want to be couple friends with one of Monkey’s doctors? I’m thinking yes.)
Naturally we’re feeling utter relief over these results, particularly as Monkey has seemed a bit out of sorts and had a lot of trouble sleeping recently. But now we know that it’s all just normal toddler stuff, and not an insidious beast growing inside him. We had vodka and home delivered Indian to celebrate. Yum!
I spoke with Dr Random while we were waiting – she wants Monkey to take part in a clinical trial which will look at whether there are any benefits to giving one of the booster vaccines soon after or during cancer treatment. Monkey is already 6 months out from the end of his treatment, which is when they recommend recommencing vaccinations in any case, so he would be part of the control group.
This has presented us with an interesting conundrum. Just last week while waiting for Monkey to wake from his anesthetic, I overheard a couple deciding not to allow the use of images of their child for teaching and research purposes. These are medical images of insides, not photos, and all identifying information is removed – I couldn’t understand why they wouldn’t agree. We have always wanted to take part in research to help others, to give this horribleness a little meaning.
So part of me wants to say yes, to take part in the research. He will need to have the vaccine anyway. But this trial would require Monkey to have 2 additional blood tests and nasal swabs, and we would have to take his temperature at least once a day for 7 days, which he hates. If the blood tests were going to just be in addition to ones he was already medically required to have, I would be less hesitant, but it seems that saying yes would be inflicting unnecessary, if minor, procedures on him. And he’s not old enough for me to explain it and ask for his permission. We have had to subject him to a lot of procedures for the sake of his health – as his parents, that’s part of our responsibility. But these ones aren’t necessary, and I feel like there is finally some small thing that I can protect him from in all this mess. I feel like I want to say no – and I feel guilty about that.
I also caught up with the social worker, in between stopping Monkey from emptying his drink bottle into the sink of the play kitchen, jumping off the waiting room chairs and ripping the posters off the walls to get at the Blu-Tak. She told us about a number of services that are apparently still available to us – the anxiety and sense of isolation and disconnection that people feel when treatment suddenly stops is well recognised.
Although Monkey is too young to make a wish, the Make A Wish Foundation will send him a big box of toys. I told the social worker he didn’t need any more toys and they’d be better going to someone who needs them, and when I told Hubs about it he said the exact same thing.
We are also eligible for the Ronald McDonald House family getaway thing – they have a couple of holiday houses in popular locations which are free to use. Naturally they’re very popular and bookings are required, but Hubs and I feel like Monkey wasn’t sick enough to warrant us taking advantage of something like that. Which in some ways is utterly ridiculous – he had cancer for chocolate’s sake. But he’s 6 months out from treatment now and things are back to normal for us. We barely dipped our toes in the pond – diagnosis to remission in less than 4 months (thank chocolate!). We can’t accept an offer of help when that same help could be so much more valuable to others. Can we? And if we feel like we’re not entitled to these services, how many others feel the same way? Others who I would undoubtedly encourage to accept whatever generosity was on offer.
It really is a weird blend of feelings on this cancer roller coaster. And I doubt we will ever truly get off.