Check out this short and pointed article in Working Mother.
Every single sentence in this article is something I have thought or experienced.
I live with it every day, but I don't often dwell on the reality that my child has cancer. My child has cancer! It intrudes on our daily lives in the form of anxiety & worry, chemo side effects, the need to always have back-up plans and carry the Huber needle, Emla cream, and thermometer. But mostly, it takes time away from doing normal things. How many hours have we spent in clinic waiting rooms, the ER, or the hem/onc unit?
I look forward to September 3 (Mollie's chemo end date) with trepidation, survivor's guilt, and a feeling that by celebrating, we are tempting fate. I plan to use these feelings to help do something about childhood cancer. I haven't decided what, but I'm mulling it over. You see, one of the most tragic aspects of pediatric cancer, is that the people who most want to advocate for these little patients, are also the most overburdened and exhausted.
Thank you for sharing your story. We will be rooting for you. Also wanted to know if Mollie has received a cap from our program - Caps for Kids?
ReplyDeleteSarah, what can we do to take some of that burden off of you? What can I do? I haven't read the article, but not having walked a single day in your shoes, I think of you 5 every single day. I have known you are anxious about this upcoming end date. I continue to root for Mollie every day.
ReplyDeleteHugs and love, Nicola
Perfectly said. There seems to be no wins in this new phase of life. Yes, chemo is finished but the worry is never too distant. Guilt is high, why is my child zipping through and others have fought so hard. And no one understands the need for change better than a parent whose lived it, but after you've lived it who has the resources left to do anything. Everything was so well said Sarah.
ReplyDeleteYay to Mollie! September 3rd will be here in no time....woohooo! What are her thoughts on not having to take pills everyday?
Miss you guys! Take care!
Wow ... what a milestone! My heart is with you through ALL of your anxieties! Thinking about you all! Jeanene
ReplyDeleteSeptember 3 - only about 3 weeks away but it will never be the end. But try to live and love life one day at a time.
ReplyDeleteLove you guys...
Well Sarah,
ReplyDeleteI have to post another comment... I remember after Mollie was diagnosed that you told me that you always feared that she would get hit by a car or a falling tree branch or lightning or what the heck, but that cancer was so far off the radar that you never considered it.
You & Matt have done a most admirable job of caring for Mollie (and siblings).
Take care of yourselves because that is SO important to Mollie.
I love you guys and I think you know that you are doing a GREAT JOB.
If you don't already know that I am telling you so.
Love you,
Dad
The disparity of money in this world really bugs me, why should a guy running around with a football earn over ten times more than a guy who risks his life running into burning buildings to save people? I don't get it, like I don't get how cancer research can have a budget much less than going to the moon. I guess it will always be so.
ReplyDeleteThe date is coming up soon, I am thinking as many positive thoughts as I can for you guys that this truly is the last. Don't worry about advocating now, you have the rest of your life to do that, for now just deal with what needs to be done to get through the days. Big hugs for the next few weeks, i'm out of town, but will be thinking about you!
Yes, we want to participate, too!
ReplyDelete