Jane Roper

Writer. Blogger. Hater of Olives.

The Worst Blog Post Ever

Dear friends (because that is what so many of you have become to me, and to my family, over these last 5 years),

This is the hardest blog post I’ve ever had to write, and I debated whether or not to write it at all. Partly because I didn’t know if it’s just too much to expose about our family and the struggle ahead of us. And partly because writing it somehow makes it more real, and I don’t want it to be real.

But sharing our family’s story with you has become a big part of our life over the past few years, and I feel like sharing this latest development will help us out – knowing you’re out there thinking of us and sending your prayers and good thoughts our way.

So, here’s the deal: Clio has leukemia in some form or another. I am tearing up as I write this, because it’s so horrible, and so unthinkable. But it’s true.

Over the past six to eight weeks she’s had some odd symptoms – pain in her legs, recurrent fevers, complaining of a belly ache, few other little things – that we weren’t able to pinpoint. I of course ran to Dr. Google and had already diagnosed her with leukemia myself.  (Because isn’t that what we all do in the Internet age? Look online and find the WORST POSSIBLE THING it could be?)

But when blood tests were run just 3 weeks ago, there was nothing alarming; it just looked like maybe she had a virus. And I was relieved and felt silly for worrying. Still, we were going to see a rheumatologist in case there was something arthritic happening.

But yesterday (god, was it just yesterday?) she had a high fever and I brought her to the ER at the hospital affiliated with our pediatrician. They ran a number of tests (bad news in the bloodwork) and immediately transferred us here, to Floating Hospital For Children in Boston. Tomorrow they’ll do a bone marrow biopsy and lumbar puncture (under general anesthesia) and also use the opportunity to get some chemo into her.

Over the next couple of days, we’ll get the results to tell us what kind of cells we’re dealing with and what treatments we’ll go forward with.

To say that Alastair and I are terrified / distraught / overwhelmed / in shock is the ultimate understatement. I think of myself as a strong person, but I don’t feel very strong right now. A few days ago Clio was her happy usual self –- a little tired, when the fevers hit, and a little gimpy, with her sore legs. And now, here we are in hospital land. It is an awful place to be.

She’s feeling OK – just dehydrated and tired, since they have to keep waking her up to check vitals. Occasionally she’s perked up. But this is hard for her, of course. She’s had to put up with all manner of poking and prodding and drinking yucky stuff. And Clio is, God love her, one stubborn, spirited little thing.

Elsa was by to visit this afternoon with Alastair’s parents. (Who have already been a Godsend.) It’s hard for her to really understand what’s happening and we’ve only explained it in broad strokes. She was mostly just excited by the novelty of getting to eat out all the time and then being in a hospital and all the equipment and gadgets and stuff. She also thought it was super cool to find out that your bones make blood. Ain’t it, though?

We’ll try to make things as normal as we can for her – keep her going to camp, still start the tap dance classes she’s so excited for. They just gave us a book called “Oliver’s Story – For ‘sibs’ of kids with cancer.” It made me cry. Everything makes me cry.

I hope once we get a bit more information about the kinds of cells, the type of treatment, etc. I can buck up a bit and be all brave and determined and courageous and all that shit.

I don’t know how often or how much more I’ll be writing over on Baby Squared in the coming months. I will, though, probably post updates on my new Facebook Page on Twitter and here. I also ask that unless you’re a close personal friend you don’t email me. But know that I read every single comment here, and anything you write on my Facebook page wall or via Twitter.

Your prayers and thoughts and hopes for us would be a great, great comfort. Please no medical advice or scary stories.

With so much love and gratitude to you all for being “out there” for us.

xoxo

Jane (and Alastair)

 

Facebooktwittergoogle_plusredditpinterest

20 Comments

  1. Jane,

    I just recently finished your book, Double Time, and have only been following your blog a few months but this news breaks my heart. My husband and I live along the seacoast in NH. There are no words… I want you to know that you, Alastair, Elsa, and Clio are in our prayers. My husband works in Wellesley, MA and we spend a lot of time in Boston. I’m sure you have friend and family support but if you need anything, we are here.

  2. Jane,
    I have followed your blog for a year or so (I have 5.5 year old and a 9 month old and I am frequently amazed at how similar the challenges are between whatever developmental issue is going on with your girls and my own big girl). I cannot to tell you how heartfelt are my wishes for Clio and your family. Sending prayers for all of you!
    I though I don’t know you – sending lots of love as well.

  3. I can’t stop thinking about you guys. I started reading your blog after my twins were born (they are a couple of months younger than Clio and Elsa) and it was just what I needed to get me through being a mom of twins. I can only remain hopeful that things will be ok for Clio who must be scared but also so thankful for her family. I know we don’t know each other but as my mother in law says, the more people who love your children the better. And there are tons of us out here who love your girls. All the best for your family.

  4. Sending hugs, prayers, wishes your way and echoing that you will get lots of support from so many of us that have been following your story and falling in love from afar with your girls over the years. I am hopeful that with good medical treatment she will thrive and wish you all strength and fortitude for the fight ahead.

  5. Jane, you and your family are in my prayers. Please let me know if there is anything I can do to help you.

  6. Sending prayers and love to you and your family. I know that I don’t know you personally, but your blog has been an inspiration to a fellow MOM. Keeping Clio in my prayers.

  7. Jane – I’ve been reading your Baby Squared blog from the very beginning, when all our girls were babies (mine is the same age) and I just want you to know that though we don’t know each other, I am sending love to Clio and all of you, and hope for a very speedy recovery and a lifetime of health to follow.

  8. I have followed you since I found out I was pregnant with twins (boys) about a year and a half ago and it continually amazes me how connected I can feel to people I know only through blog posts, as I do to you. I am so sorry to hear this and am sending you and your family love and prayers. Although I feel selfish to say it, I hope you’ll continue to provide updates as I know I’ll be thinking about you all a lot in the coming weeks and months.

  9. I am so, so very sorry. So sorry. Will keep you all in my thoughts and prayers.

  10. Lucia Duquette-Holmes

    July 2, 2012 at 11:54 pm

    Jane, my heart is breaking for your guys. I can’t even imagine. Let me know if you need anything, I’m happy to take Elsa if you need someone to watch her. I know Willow and Fiona would be happy to keep her company. You and Alastair and the girls are in our thoughts during this difficult time.

  11. I am a long time reader of your blog. I am so sad to hear about Clio. I am thinking about you and your family.

  12. Hi Jane,

    A friend told me about your blog and I just wanted to share my story with you. My 4 year old daughter Olivia has ALL(leukemia) pre-b. She is considered high risk because she was taking steroids for an infection before she was diagnosed. It is completely heart breaking to know that your own child will have to endure chemo, pain, weakness, etc instead of being a kid. : ( Olivia was diagnosed on 12-19-11.

    I know a group of ladies on Facebook who are a great support group. Their children has leukemia. I’m truly sorry that you all have to go through this. : ( By the way, Olivia is a twin too. If you would like to check out Olivia’s leukemia story, you can through the website that I attached.

    Just remember that Leukemia is very curable now. ALL has a cure rate of 90%-94% according to statistics from St. Jude and the Children’s Oncology Group.

    If you would to chat, please e-mail me.

    I will be thinking about you all!!

  13. sorry for the rough news…thoughts and prayers are with your family…

  14. Ron Chowdhury

    July 3, 2012 at 11:19 am

    Jane:

    Jesus. I’m so terribly terribly sorry to read this. I’ll be praying for Clio’s recovery. Please try to take care of yourself. Sending you a hug from L.A.

    Ron

  15. Jane,

    I’m so very sorry to hear about your daughter. I will keep your family in my thoughts and hoping for (and expecting) the very best of outcomes. Please remember to take care of yourself too.

  16. Jane,

    I am so sorry to hear of your daughter’s illness. Having been a chronically ill child myself and having recently had one of my twin girls hospitalized, I know it is a very difficult road. You and your family are in my thoughts. If you ever decide to look into second opinions, know that you have a twin mom connection in the hem onc dept at DFCI/CHB. Feel free to reach out anytime.

  17. I am so sorry to hear of Clio’s illness. I hope that you will get more information soon and that it will be the best possible news. Sending positive thoughts to all of you, I will keep you in our prayers.

  18. How scary, and freaky, and profoundly disturbing to your lovely family. My childhood friend is in the same boat – son, age 6, hit out of the blue, but getting great care in Wisconsin. He is blogging for his son, #supermansam, at supermansam.blogspot.com. His quote: “The mantra is “already healed.” The vision is of my healthy six year old running and playing without a care in the world. Altogether now as we create the reality we seek.

    I wish you a smooth roller coaster. Ups, downs, twists and turns, exhilaration and your stomach dropping, all in a matter of a seconds. And, then, your already healed daughter will get off the ride with you, hold your hand, and you will head off to the next adventure.

    Be well.

  19. Jane,

    It was so lovely to meet you last week in Portland. So sorry to learn this news, but I will most definitely keep you and your family in my thoughts.

    All best,

    Jen

  20. I’m sorry to hear this. We’ll be praying for your family and the health of Clio!
    All the best,
    Kimber

Leave a Reply

Your email address will not be published.

*

© 2017 Jane Roper

Theme by Anders NorenUp ↑