September is Childhood Cancer Awareness month. Did you know that? 2 years ago…I didn’t. In honor of all of the kiddos affected by this terrible disease, Sophie The Brave is going Gold. I’ll be posting daily on the Facebook page in an effort to gain as much awareness as possible!
To start, last night I spoke at Go Gold 2018 our local Childhood Cancer Awareness month kick off.
Here is my speech:
First of all, I’d like to say thank you to Gold Network for constantly pouring into this community of cancer families. Thank you Heather & Josh for listening to the Lord’s calling on your lives to make a difference even when you were in the midst of Sawyer’s fight. I love you both so much.
September, used to be just another month for me. Labor Day meant a day off after the first two weeks of school. My sister and my dad’s birthdays are in September. It meant college football season and hopefully cooler temperatures.
Then, my world got really big, really fast and I found out what September really is.
My daughter, Sophie turned 2 on March 19, 2017 and two months later on May 18th she was rushed to Children’s in Dallas with a tumor the size of a softball in her chest pressing on her right lung, her airway, and her heart. We heard the words mass, tumor, oncology, ICU, cardio, oxygen, neutrophils, chemo, steroids…and so many others that I never in my life imagined hearing. One week later we had a diagnosis, stage 4 Lymphoblastic Lymphoma. I could stand here all night and tell you about her fight and how incredibly brave and amazing she was but, you all need to get home at some point.
We fought this aggressive tumor with a vengeance and every 1% complication that could happen, did. Fever, fungal work ups,infected diaper rashes, months in the hospital, relapse, ICU, breathing tubes, adult grade chemo, catastrophic brain damage, complete disability from chemo…..and finally a second relapse and then she was gone. January 4th of this year was the day I held my fuzzy headed baby for the last time.
Again, I could go on about all of that another time but tonight, tonight is about the fight for awareness and research so that no one else has to do what we had to do.
When Sophie was diagnosed, our world got so much bigger. We entered the world of IV pole tetris in the playroom, face masks, puke bags, therapy dogs, nerf gun wars with nurses, isolation, fear and great hope. The world where nurses are family and doctors become your best friends. You learn every name of the people at the check in desk and you have a ‘regular’ in the cafeteria. We realized that childhood cancer is not just cute, smiling bald kids on St. Jude’s Commercials. While they are cute and bald….and they do smile way more than you’d expect. That’s far from all there is.
It’s incredible to watch a child fight cancer. Any of the families here will tell you it’s the most terrifying experience of your life but also, it’s the most incredible. We see our kids battle things grown men would faint at.The resilience of these kids is astounding. But as incredible as they are….they shouldn’t HAVE to be.
Sophie’s fight and death have inspired a great desire to keep other kids from this monster. That’s what September is to me now. A chance to spread her story and the story of so many others to as many people as possible-To shine light on the lack of funding for new treatments, the lack of long term support as these kids grow and deal with lifelong side effects from the outdated ADULT chemo they recieve. September is a chance to show that COMMUNITY, LOVE, and MASSIVE AMOUNTS OF PRAYER are the only way to get a family through this.
So tonight is in fact to honor these incredible kiddos that are here tonight, the kids that are fighting in the hospital currently, and those that we have lost like Sophie, Brock, Kaylynn, Audri, Riley, Luke….and thousands others. But it’s also for everyone else. The friends and family. The church members. The community. Stand up and fight with us. Go Gold in September and the other 11 months of the year. Because Kids can’t fight cancer alone….and neither can their parents.
I’d like to quickly finish by reading something that I came across recently written by a cancer mom named Carol Baan in 2003.
I hope you never have to hear the words, ‘Your child has cancer.’
I hope you never have to hear, ‘The prognosis is not good.’
I hope you never have to prepare your child to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.
I hope you never have your child look at you with fear in their eyes and say, ‘Don’t worry Mommy, everything will be okay.’
I hope you never have to hold your child as they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the ‘cure’ you pray for slowly take away their identity, as they
lose their hair,
swell up from steroids,
develop severe acne,
become barely or unable to walk or move,
and look at you with hope in their eyes and say,
‘It’s going to be okay, Mommy.’
I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.
I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, ‘There is nothing more we can do.’
I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.
I hope you never have to see a child’s head bolted to the table as they receive radiation.
I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred. And they look at you with faith in their eyes and say, ‘It’s going to be okay Mommy.’
I hope you never have to face the few friends that have stuck beside you and hear them say, ‘Thank God that is over with,’…because you know it never will be.
Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to ‘normal’. While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…
‘The cancer has returned’ or ‘The tumor is growing.’
And your friends become even fewer.
I hope you never have to experience any of these things…Because…only then…
Will you understand…
Thank you so much for being here and for supporting Gold Network. I hope you’ll Go Gold with us all month long.