Every month, ACCO shares stories about children diagnosed with cancer from the parent’s perspective. Today, read about Ashton’s journey through medulloblastoma.
Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Yes, when I was in second grade at a small catholic school in Indiana, my classmate Mikey had brain cancer. I believe his fight lasted around two years and then he passed away. I still remember being so sad and carrying at the wake and his funeral. Although I did not understand cancer, or what was going on it was scary.
Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?
It started like any other day. She was getting ready for her second day of school. Then, when she came downstairs, she told me her stomach hurt, then her head hurt, and then she ran and threw up in a bowl. It was then I called my husband to come home and that she needed to go to the ER at Cincinnati Children’s immediately.
I’d had a feeling that something was wrong for a few weeks.
It began when Ashton started coming to me and telling me when she would get off the couch she felt dizzy. I told her “that happens to mommy too, it’s okay.” Then she started getting a lot of headaches. I thought nothing of them until I finally asked her where they hurt. They had become so frequent it was no longer normal. That was when she pointed to the back of her head, right above her spine and told me “here.” I took her to the ER where we were sent to urgent care and my concerns were dismissed as overreacting.
On that second day of school, when she should have been playing and learning with her friends, we found out she had a large, aggressive tumor growing in her cerebellum. And as every cancer story I’ve read goes, that was the moment our lives changed forever.
Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation? Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?
We begin radiation on 9/25 for 6 weeks, an ovarian tissue preservation surgery, and chemo therapy for a year.
Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena? We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s. Overall – how did your child’s journey shape yours and your families new normal?
For now though, being thrown into this world is every parent’s worst nightmare.
It’s a club no one wants to join.
It’s heartwrenching and there are no words that can make things better, take away Ashton’s pain, or fast forward time to know how everything will turn out. In Ashton’s short journey there have been days that are terrible, good, and great.
What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
{From her facebook page}
Every parent understands that innate, supernatural yearning for your kids to be happy and to be able to protect them from whatever it is that could harm, hurt, or damage them. You know, the inexplicable bond that makes it so you know that you will always do whatever it takes for them.
And even though I try and hide from my own thoughts, and I spend very little time on social media anymore, I see pictures of her friends, and wonder, would Ashton be in the picture, if she didn’t have cancer?
And I truly think, yes, yes, she would probably be.
And then the tears come. Every. Single. Day.
Because within a second, that was taken from her. From us.
From even one round of chemo, Ashton’s blood counts have gotten so low, that we are anticipating a blood transfusion any day before her second round of chemo even begins mid-February.
That means more isolation, more hearing I am “bored” and more trying to create the best memories we can from within our home.
It means more time to forget the things she’s learned, the life she used to have, and memories that she doesn’t remember anymore.
She remembers so little, that even when I show pictures or things in real life she has no recollection at all.
It’s so hard.