In less than five months, Clio’s treatment will be done. No more chemo, no more steroids, no more need to call the clinic or get pumped full of antibiotics or spend time in the hospital if she gets a fever. They’ll remove the port that’s been in her chest since three days after her diagnosis.
Five months sounds like a long time, and relative to her overall length of treatment — a little over two years — it’s not a particularly small portion. But over the past several weeks, it’s started to feel like we’re on the home stretch, albeit a lengthy one.
When other people hear this, their reaction is inevitably “that’s great!” or “a light at the end of the tunnel” or “you’ll have to have a big celebration!” Which are all completely understandable and lovely reactions.
But they don’t reflect how I feel. I mean, yeah, I won’t exactly miss having to deal with all the medications, or the steroid weeks, or the many inconveniences. But my feelings of relief on that front are far outweighed by the anxiety I’m feeling about the end of treatment.
Over the past year and a half-plus, as miserable and stressful as it’s been at times, at least we’ve been actively *doing* things to treat Clio’s cancer. We have some sense of control. But once she’s off treatment, that sense — however illusory it may be — will be gone. Ain’t nothing we can do to keep the cancer from coming back if it wants to come back. All we can do is watch and wait and hope.
Many people ask if there’s some sort of test they’ll do to declare Clio completely cancer free at the end of her treatment, but the answer is no. She’s been technically in remission since the end of July, 2012 — 28 days after her treatment began. The bone marrow biopsy she had at that point detected only statistically insignificant residual disease. This is the goal of the intensive first phase of treatment, and it’s a goal attained for the vast majority — something like 95% — of kids with Clio’s type of leukemia.
So the following two years of treatment aren’t a matter of getting her into remission. They’re a matter of keeping her there. If left untreated after initial remission, the leukemia returns 100% of the time. It’s hiding there in her body somewhere. All it takes is a single cell. (For more on the meaning of remission as it applies to leukemia, read the last section of this.)
But endless research has determined that for her subtype of leukemia, the protocol she’s been on, for the length of time she’s on it, has the best possible chance of destroying any last traces of cancer. Doctors hesitate to use the word “cured,” but once an ALL kid is in remission for 5 years (so, three years after the end of treatment, in Clio’s case) relapse is extremely rare.
When Clio’s treatment ends, we won’t be completely cut off from the medical world — thank God. There will still be periodic visits to the clinic to get blood drawn for complete blood counts. (Gee, how stressful will waiting for those results be?) Our Nurse Practioner, who is our primary point of contact at the clinic, has made it clear that we can call her at any time, about anything, which is comforting. (She told me about a mom whose son is 28, and has been in remission since he was 14, who still calls her occasionally.)
But she also told me that in her experience, end of treatment is second only to initial diagnosis in terms of the stress and anxiety it causes parents.
I know that once Clio’s off treatment, any little thing that happens with her — any change in her energy level, any bruise, any fever, any virus, any belly ache or nosebleed — will strike fear into our hearts. We’ll have to remind ourselves over and over and over again, that all the little things we know as telltale signs of leukemia can also be (and almost always are) completely benign.
I have faith that over time we’ll worry less, and exhale more completely. Maybe once we get to that five year mark, we really *will* have a big celebration. But I think the first months, maybe even the whole first year, are going to be rough.
Of course, on the off chance that Clio relapses, it doesn’t mean there aren’t more options. Plenty of kids relapse, are treated again, and are completely fine. Some relapse two, even three times and end up being OK. But, of course, relapsed leukemia is much harder to treat. You’re in a much more tenuous position, and the treatments are much more aggressive and dangerous.
And, dear God, the idea of having to start from scratch and go through it all again? All the terror, the anxiety, the hospital stays, the medicines, the clinic visits, the utter disruption of our lives? All I can imagine is crumpling if it were to happen. Completely crumpling.
People have commented throughout this crappy little boat trip how brave I am, and Alastair is. What I don’t think they realize is just how brave we’re going to have to continue to be even as we reach the shore.