Too much excitement just might kill me!
Monkey has his next MRI on Tuesday. I can’t believe it has already been 3 months since the last one. That means he’s been out of treatment for 6 months. It feels weirdly like it just happened yesterday, and never happened at all.
I hold all the same fears as last time, particularly in regard to fasting him for the anaesthetic. I won’t bore you with a rerun.
What is different this time is there is more of a sense of anticipation mixed with the dread. Last time it was mostly all nerves for the result. This time I’m half terrified that his cancer will be back, and half looking forward to the reassurance that a good result will give (however briefly).
In the last few weeks, right around when he hit 20 months, we’ve noticed significant changes in Monkey’s behaviour. He has a bit more of an attention span, and will occasionally play with blocks or trains by himself for a few minutes. He is also on and off super clingy, and will tantrum with very little provocation (case in point – the dogs refuse to do as ordered). He’s been super sweaty, but it’s super humid here and he’s always been a warm kid (takes after his father!). We also wonder if his teeth are doing something as he is crotchety some and has more trouble than usual sleeping. And eats Bonjella out of the tube.
All of which is totally normal for his age, I assume. But the change was so sudden and whenever anything is slightly different it’s really hard not to immediately wonder if his cancer is coming back. Hubs struggles with this more than I do, but we take turns playing devil’s advocate (is there an opposite to that?). We simply don’t feel as though his cancer will come back. He’s too happy and energetic and cheeky and lovable and busy to have time for cancer. But we never felt like he would get it in the first place, and although his personality means the world to us, cancer doesn’t care. Also, he’s just got his hair back!
So we remind each other that even if it did come back, the doctors sound confident that more chemo and/or surgery would fix him up again. Thankfully relapses seem to be much more treatable in intermediate risk cases (like Monkey) than high risk. And the odds of a relapse for stage 3 neuroblastoma are quite low – only about 10% I believe, compared to 40% in high risk cases. Except that the odds of getting neuroblastoma in the first place are so much lower than that. His chance of survival is better because his cancer hadn’t spread, because he was so young at diagnosis and because his tumour didn’t have N-Myc gene amplification (which roughly halves the survival rates, and makes a relapse very bad news). But really the odds mean nothing – the only one we care about is our little Monkey boy.
And we remind ourselves there are no guarantees in life. Monkey’s cancer could come back. Or he could go to watch a marathon aged 8 and die out of the blue because of some complete asshole. (I am so, so sorry for that poor boy’s family, and for everyone involved in the Boston bombing). He could get hit by a drunk driver at age 18 like my sister-in-law’s cousin. Or he could live to be 94 and die peacefully in his sleep like my great grandfather (this is my preferred option!). No guarantees – we just see the fragility a bit more closely than some.
Relapses are most common within the first two years, although one doctor told me that with some more aggressive forms of neuroblastoma it can pop up again five years later. Chocolate forbid.
In any case, although the scan is only a few days away, we have to wait another 8 days after that to get the results. Ugh.
I hate the scans, and I love them. They make me nervous, but I expect I will also be nervous when they start spreading further apart, because they are the only way we have of knowing what is going on. Oh how I long for those urine markers that are present in 70% of neuroblastoma cases (and generally give better indication than a scan) – at least then we could test his wee every month!
I plan to ask the doctor this time (if I remember) whether they can be sure that Monkey’s cancer would relapse in the same place as the original tumour. I’ve read that in about 8% of relapses the cancer appears in areas other than the original site (usually lungs or brain OMG), but that was for high risk patients (where the cancer has spread) and so I hope it doesn’t apply to Monkey. Because if it does and they’re only scanning his spine where the original tumor was, how would they know if it decided to pop up somewhere else?
Intellectually, I know that they know what they’re doing, and I know that the remission protocols are all based on research and they have to balance vigilance against necessity (especially when repeated general anaesthetics are involved). But oh how I long for that Star Trek medical tricorder so I could scan him every damn morning.
Cancer is such an asshole.