Jane Roper

Writer. Blogger. Hater of Olives.

The Last Five Years

A little over a week ago officially marked five years that Clio has been in remission: no perceptible cancer cells in her body.  After two years of intense treatment and three years without any signs of relapse (occasional parental freak-outs notwithstanding), it’s very, very, very, extremely, extremely likely at this point  that her cancer — the same cancer, that is — will never come back.

Five years is a big milestone in the cancer world.  In the pediatric leukemia world, at least, it means you’re officially  a “survivor.”  I should probably feel some  big sense of relief at this.  And I do feel relieved, on some level. Obviously it’s a comfort to feel like we’ve got the stats in our corner now. Officially. And that Clio — and our whole family, in a way — are survivors.

And yet, as has been the case with other “treatmentversaries,” we’ve noted, I haven’t really felt this one on a deep, emotional level.  I mean, I’m happy obviously. (Obviously!) ButI don’t suddenly feel some huge sense of relief and joy all at once because now we’ve passed the five-year mark. It’s something that’s been building gradually over time, the farther away we’ve gotten from her illness.

Still. It’s a good thing, and I felt the need to mark the occasion with a blog post, so here it is.

The truth is, the anniversary that I feel much more — and did this year, as well — is the anniversary of when we found out Clio had cancer. It wells up pretty hard in June, which is when it happened, especially if there are places or recurring events that remind me of those first days.

[wavy screen, wavy screen, calendar flips backward to 2012….]

Two nights before Clio was diagnosed, I was up in Maine giving a reading for Double Time, which had come out a few weeks before. Alastair was home with the girls, and he took them up to see some fireworks at a park in Somerville, a few blocks away.  Our good friends and their daughter went, too.

Clio had been having strange, unexplained symptoms for over a month at that point — intermittent fevers, stomach pains, increasingly achey legs. She was almost hobbling by then. And a couple of days before the fireworks, she’d started getting hives randomly, too, itchy and huge.

We’d already taken her to her pediatrician twice, had blood work done that showed up normal, and — feeling like the doctor wasn’t taking our concerns seriously enough, and knowing that something wasn’t right — we’d made an appointment with a rheumatologist, whom Clio was scheduled to see the following week.

Still, she was happy and energetic enough to go up to see the fireworks that night, and she and Elsa and their buddy raided the dress-up bins and got all dolled up and went. Meanwhile, I gave my reading up in Portland.

Clio, left, looks so thin, so pale. She was dying, and we didn’t know. This is my least favorite picture in the world. Except for the costumes. The costumes rule.

Afterward,  late,  Alastair called me at my parents’ house, where I was staying, and said it had ended up being a really hard night. He’d let the girls wear their dress shoes without socks (bad Daddy) and at some point Clio started complaining — and then crying and screaming — that her feet hurt.  It seemed like she’d started getting blisters. Then Elsa started complaining about her feet.  Ultimately, he ended up carrying the two of them back home, both of them freaking out.

Which could totally have happened in normal circumstances — overtired twin 5-year-old meltdown. But from Alastair’s account, it was way more intense than that. And at that point, both of us were very attuned to the strange things that had been going on with Clio. Something about her reaction, and the whole thing, just felt like one more piece of the puzzle. The problem.

When I got off the phone with Alastair, I told my dad, who was in the room during the phone call,  what happened. He knew about Clio’s symptoms, so he understood the larger context.  He said, “You guys are really worried about her, aren’t you.”  And I said yes, we really are.  I realized in that moment just how worried.

Two days later, we were in the hospital, and had been told that Clio most likely had leukemia.

So, six weeks ago, June  29, when I was driving  past our old neighborhood, on my way to a reading in Cambridge, and realized — due to a bunch of street closings, and the sight of a parade toy vendor rolling his cart up the road — that the very same fireworks were happening, I got wallopped. Ache in the chest, holding back tears. I called my friend Megan who was with us that night five years before, because.

Because that was the night I felt the gravity of five years: A milestone that had seemed impossibly, infinitely far away, and maybe unattainable altogether, when Clio was first in treatment. She would be ten — ten?! — when she was considered “cured”?  (Assuming…assuming….) She was only five! Just finished preschool! Still used a car seat and watched Curious George. Ten? They might as well have said she’d be fifty.

But here we are now. And there she was, back home while I drove to Cambridge that night — tall and vibrant and happy and healthy and ten years old.  A full head of beautiful hair, back to looking much like it did before she lost it.  No medical supplies on our kitchen counters, or Dana Farber phone numbers on our fridge (our fridge in a different house, in a different town). No more Curious George. As I write this, she and Elsa and a friend are watching The Flash.

She’s a big kid. And so is her sister. And Alastair and I are in our forties, tougher and wiser and a little bit softer, inside and out. The crappy little boat trip we were on has — we hope — ended, and we’re here on the shore. I hope to God this is where we’ll stay.

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16 Comments

  1. Jane,
    We are currently on the “crappy little boat trip” and have been since 3/29/16. Our son was 4 when he was diagnosed with pre-b cell ALL(low risk). I have read every one of your blog posts about Clio’s journey and have been so thankful for them. I pray your family stays on shore.
    I know exactly what you mean when you say you hate that picture…my little guy was diagnosed 2 days after Easter and I am so tormented by those pics. And, yes, this March (marking our one year “diagnosiversary”) was extremely tough, because as you have said, he was dying and we didn’t even know it. I can’t thank you enough for sharing your family’s journey.
    Prayers always.

  2. A great post about a traumatic part of your life! My MUCH less intense flashbacks are of only half of your family being on Sandy for vacation. We were thrilled to be able to celebrate with you last weekend, and I’m looking forward to seeing all four of you on vacation.

  3. Bravo , Clio! My own 5 yr mark will be here in November. I’m so happy that you are thriving and happy. Here’s to many, many more years of good health 🙏🏻😘

  4. Peggy Ellertsen

    August 11, 2017 at 10:19 pm

    Jane, thank you for writing such a poignant piece. Am thinking about what you’ve shared. I’m old. Young-old, I hope, but still, I’ve been around the block a few times and then some. At this point, to me, one of the most miraculous things about this life is that miracles, in fact, really do happen. What I mean to say is that it still amazes me that, sometimes – often, even! – things really do work out. I think that that old incantation, “Believe” is hard to do when we’re staring loss or disappointment or terrifying possibilities in the face, but, in fact, sometimes our dreams really do come true. SO happy that your girl is thriving and healthy. A wonderful outcome to a very hard chapter. See you soon, Jane!

  5. Five years. I can’t believe it. I am so happy to read this update. I’m glad the boat ride is over. Thanks for sharing the trip.

  6. I remember reading your Facebook posts five years ago. It feels like many more years…. I am so thrilled that you are on shore. Clio could not have been any luckier to have all of you with her on this journey.
    We miss you all and hope to see you soon!!!!

  7. Amazing. I’ve followed you for years now and in those years have gone through a pretty devastating cancer diagnosis in my family. Clio and you are inspirations. What wonderful news about this milestone anniversary. And what a wonderful girl. Cancer, whether she likes it or not, had made her a warrior. But she has always been beautiful. Again: amazing.

  8. Veronica von Bernath Morra

    August 12, 2017 at 7:29 am

    Over ten years since Alastair announced at a house concert that he was about to be or just became papa to twins. He was beaming, and nervous. A GOOD nervous. It sure was a rollercoaster for the four of you. So pleased about the great outcome and hoping for fabulous things in the future. I follow your blogs with admiration and love. Keep on writing. You rock!!

  9. So happy to hear about Clio’s happy outcome. May she stay healthy and grow up to be a beautiful woman.

  10. I just love you. All of you. Thanks for sharing your lives with the rest of us – in all the many ways that you do. My prayers for health and happiness are always with you. xoxoxoxo

  11. I loved reading this, Jane.

  12. Five years really is such a milestone, Jane. I’m so glad to hear Clio is healthy and thriving. xoxo

  13. Wendy Mastronardi

    August 13, 2017 at 5:14 pm

    Thank you so much for sharing this important moment. Congratulations and love to your wonderful family.
    Wendy

  14. I’m a generation older than you. Your story reminds me of one that my mother used to tell about my brother, who had polio at the age of six. (I was only three, and all I remember was jealousy about the attention and the trips to exotic and mysterious places — like hospitals and rehab — that I was denied!) Much later my mother about the ordeal in ways very similar to yours. Fortunately, my brother had no long-term effects, and is now in his seventies. May Clio’s story continue in the same way! Congratulations to the whole family.

  15. 5 years is huge. I’m so happy for you guys. I agree with what you said though. The pictures right before diagnosis tear my heart out and make me insane looking for clues. We are only a few months off treatment and everyone else expects things to be back to normal and it to be a constant celebration. But things don’t feel that different yet and we are all still reeling from 2 plus years of treatment. Wishing you and your family health & only happy times going forward. Thank you for your blog. It’s helped!

  16. It feels like yesterday. So glad those days are gone (which is sad in itself), and that Clio is “in the clear “.

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