This Time Last Year

Preschool graduation, June 2012

The girls’ preschool graduation, June 2012

It’s hard not to play the “this time last year…” game when there’s been a big change in your life. I remember doing it when my girls were a few months old: This time last year, I didn’t have kids yet! And a year after the several-months’ trip I took to South America when I was 25. This time last year, I was strolling around Cusco!

We’ve been doing it a lot around here lately, too: This time last year, Clio didn’t have cancer. Rather, she did. We just didn’t know it yet.

It was around this time last year when her symptoms began: Occasional fevers with no other symptoms. Intermittent leg and hip pain. Periodic complaints of vague belly aches.

Looking back on it now, it’s all so haunting and ominous seeming. But at the time, we didn’t know it was all related, and we weren’t overly worried — not at first, anyway. The fevers? Maybe some weird virus she couldn’t quite kick. The leg pain? Growing pains, probably. The belly pain? Maybe just her not being able to articulate what it feels like to be hungry.

It wasn’t until about the second week of June, when things seemed to be getting steadily worse, that I started Googling things like Lyme disease symptoms. Juvenile arthritis symptoms. Leukemia symptoms. Our first visit to our pediatrician, and the “within the range of normal” blood test results we got back put our minds at ease, temporarily. But the symptoms kept getting worse.

A second visit to the pediatrician yielded no new insights. New symptoms had started appearing — bleeding gums, hives, crusty blood in her nose, what seemed to be a swollen belly — and we started feeling increasingly frustrated at the lack of answers, increasingly worried. But at least, we thought, it’s not leukemia. Because the blood tests would have shown it.

Meanwhile, I can look back at our calendar for May and June of 2012 and see dates and events that bring to mind conversations I had with people about Clio’s “mystery ailment” or times when she had a fever, or was feeling particularly tired or achy.

I see the reading I did in Maine on June 28, after which Alastair called me to say that Clio had gotten a giant, single hive on her leg that had brought them home from a fireworks display at the park. She was screaming, inconsolable. But then the hive went away and she was fine. Good as new.

The next afternoon she ran a fever. The next morning I brought her to the Emergency Room.

I remember that whole spring, it seems, with unusual vividness. Maybe after Clio was diagnosed, my mind seized on all those recent memories for dear life — those last, shining moments of normalcy. The golden hour of life pre-cancer.

And still, it’s hard to remember what life was like before Clio had cancer. And it’s difficult to think back on it without a pang of pain and loss. Sometimes a pang strong enough to bring tears.

But the good news about having arrived at the one year mark (or close to it) is that Clio’s treatment is about to go into Maintenance (or “Continuation”) mode. This means no more high-dose steroids, no more asparaginase shots (her last one is tomorrow, actually!), and we only have to go to the clinic every three weeks most of the time — instead of twice a week.

“You’ll get a little more of your life back,” one of our favorite nurses has said.

It won’t be the life we knew prior to this time last year, but we’ll take it.

Clioin2012

That was then…

ClioAtClinic

This is now.

ClioAtOneFamily

But this is also now — Clio singing “When I Get Bald” at one of Alastair’s shows. Pretty damned cool.

 


Tags: , , ,

13 Responses to “This Time Last Year”

  1. Michele says:

    Big Hugs! I wish you all did not have to go through this at all, but congratulations for getting through this very difficult year with grace and your wit(s) intact. Wishing you all a fabulous summer and hoping “maintenance” mode is much easier on you all.

  2. Korinthia says:

    Here’s hoping that looking back a year from now you are in a much easier place and can just be impressed with how well you managed to deal with so much.

  3. Cathy says:

    We love the Moock/Roper family!

  4. April says:

    Just think of how strong you all were this year! You are inspiring to me and every other parent out there in the world. Your life will get back to normal again eventually and you all will be more loving, stronger and closer to each other. Sometimes going through something awful makes you appreciate and enjoy life more afterwards. I believe and have faith your horizon is a shiny happy place. :)

    Love you guys and sending prayers and good thoughts your way.

  5. Laura Case says:

    I can’t believe it’s already been a year! As much as I love your beautiful words and the grace with which you’ve written here, the before and after photos tell a huge part of the story.

    I don’t think I’ve ever commented this, or if I have, forgive me for repeating. I’ve read your blog(s) a long time and rarely commented. Then this happened to Clio, then in January my best friend’s 2 year old (also a twin) got diagnosed with brain cancer. It has been such a gift to have been able to read along in your journey as I’ve been in these dark moments, so thank you.

  6. Ewokmama says:

    A year of treatment behind you – that’s something great to have! Welcome (soon) to maintenance!

  7. Cara Burrell says:

    Been doing the same thing here this week. We’re waiting for counts to recover to start interim maintenance…and it feels like forever. Looking at some old (OLD! Only 6 months ago!) photos made me realize I couldn’t even remember BC. You guys are almost there…Hang in there! And thanks for writing…you are a bright spot in my day.

  8. Sheri Saperstein Richberg says:

    We miss seeing you all at Six Acres and send Clio (and ALL OF YOU) heartfelt wishes for a healthy and fun summer. Hope to see you soon at the pond or the playground!! xxx sheri & kobe

  9. phyllis says:

    Oh yes….we play this game too. It’s so hard to believe that we started all of this at around the same time…it’s been so hard to watch the dates on the calendar advance toward “diagnosis day” and not feel some sense of dread….it’s good to know that Clio is moving forward into an easier part of the treatment! Yay!

  10. Valerie says:

    The days leading up to Ruby’s “diagnosiversary” brought back so many flashbacks, details of everything we did, every symptom we thought was probably nothing. But you are very close to thinking, “this time next year”, when Clio is off treatment. That has been comforting to us. We keep saying, “this time next year, we can do xyz because Ruby will be done.” And then we go knock on wood and all sorts of other superstitious things :)

  11. Such a poignant post, Jane. Love the photos of your sweet girl! Cheers ad hugs from Denver, K.

  12. Your story is my story–down to the bleeding gums and fevers. My daughter was diagnosed exactly 6 years ago today ( when she was two and a half) with ALL. She is now a perfectly happy and healthy second grader. You may not remember the before but you’ll always remember the NOW which is so much more wonderful. I promise you that life will only be sweeter from here on out. Thank you for sharing your story so eloquently.

  13. Lisa Hickey says:

    I woke up tonight, restless, insomniac-ish. And I went onto Facebook, which I haven’t had time to browse much lately. I used to love Facebook! It told me stories like yours!

    Someone had posted a story of chemo medications being re-packaged as “Superformulas” that superheroes use to restore their superpowers. It’s great — the I.V. cases have the superman logo on them, for example.

    And I read the story and then started panicking — “I haven’t heard from Jane! I hope her daughter is OK!” And what a relief to see go to your FB page and see and read this blog post.

    I’m so happy you’ve made it this far, and I’m really glad you were able to share yours and Clio’s story with the rest of us. Sending and extra-super large dose of good wishes and healing thoughts your way.

    thanks, Jane

Leave a Reply