Monthly Archives: July 2016

It’s Times Like These

Thank you Rich Hostelley for dedicating this song to Katherine at the end. And thank you Kelly Livingston for sharing it with me…. Miss that girl so much. Mornings are hard for us, although this cheered us up.



#KatherineTheBrave #DIPG #LovesAndKisses

Katherine Cared

Katherine was a very kind, deep thinking, and angelic child. She cared about those around her. An example that all of you mothers and fathers will appreciate is, she would wake up on a Saturday morning, such as this, and walk into the living room and turn on the TV all on her own, at the very age you see her in these photos. She didn’t want to wake us up. Katherine cared that we rested. You could ask Katherine on a daily basis what she wanted to do, and 9 times out of 10 it was followed up with, “What do you want to do?” Katherine cared that we felt included. Tori and Alissa would volunteer to watch her, so that momma and dad could go on a date. Katherine would put on her “sisters in charge” face and be on her best behavior. There was never a complaint. She would just relax with them and do what they said. Katherine cared about her siblings. These photos are Katherine King and her cousin Kyleigh. She cared so very much about her cousin. So much so that she would pick what Kyleigh wanted to do over her own choices, even when the age gap was more apparent, such as the photos attached. Katherine cared about family, so much… To the day Katherine passed her biggest concern was having fun parties and Kyleigh and Molly being there and enjoying themselves. Katherine cared that they felt joy. Katherine. Cared. Period.
Katherine cared about everything, and everyone… So why didn’t the American Cancer Society, the National Cancer Institute and our government care about Katherine? A child such as this, whom more than likely would have grown up to be a doctor, caregiver,a researcher for rare diseases, possibly a teacher, who knows… Katherine should have had access to the most amazing medicines available. A cure should not have been hard to come by. Someone should’ve cared, someone should’ve cared for Katherine.








Congress Approves

“Like you, I believe that we need to continue to invest in research and treatment options for rare diseases like DIPG.” – Mimi Walters, Member of Congress, 45th District, California.
Thank you Kelly Livingston, Mimi Walters, and her staff writer for responding, for caring, and for fighting for a cure!







Is it just me, or are more cancer families sharing those awful pictures of truth regarding their children’s final days, and showing the public what cancer is really like? Up until Katie passed, I had only seen one child’s family share the ugly truth, as we did. Now, I see it every day. Maybe it’s just me being more aware, but I’d like to think that Katherine The Brave inspired people to not be silent. To speak the cold, hard, truth about their children’s ugly diagnosis. Katie wanted this, she wanted to smile for the camera, but still show the reality of her illness. My child is gone. My beautiful child left this world a shell of what she was before diagnosis. Those struggles must be acknowledged, and people must be made aware or the nightmare we experienced, so that we all can do more. I find it so important, and I encourage more to do the same, share the truth. Yes, the truth hurts, but it also spreads awareness. A death such as what our children have experienced should not be hidden. They deserve our continued efforts to make this disease known. It’s the secrecy of it all, which has allowed it to continue to be considered a “rare” disease. If it offends, then you have accomplished the task at hand. Let followers tell you they can’t look, and how could you post this, and they don’t agree with your choice in photos. Offending others is the least of your problems. Offending others is a testament to the beautiful human being that you watched wither away and die, because others didn’t want to offend. Offending means they are aware, and disgusted, just as we were every day within our homes, suffering, as our children suffered. Doesn’t matter how this is happening more actually, all I can say is thank you other parents for joining us, joining Katherine, in your stories and photographs. #honesty #truth #pleaseoffendme #DIPG #pediatriccancer #gogold #gogray #katherinethebrave #lovesandkisses


Progression. The hardest word for a cancer warrior and family to hear. “Progression – a movement or development toward a destination or a more advanced state, especially gradually or in stages.” Siunds exciting. Change. Progress. Sounds nothing like watching your child deteriorate slowly, and whither away. I find this definition odd compared to what it actually felt like. It felt more like deterioration. “Deterioration – the process of becoming progressively worse”. Yes… That’s the word.
I miss you Katie. Today I’m reminding us all of your life, and your slow “deterioration” from a loving, beautiful, free spirited child, to what you had become because #DIPG chose you. I am sorry that momma couldn’t make you feel better.
I feel lost tonight. Can’t stop crying. Can’t get that moment out of my head, June 6th, 7:34 PM. I’ll try again tomorrow. Goodnight everyone. 



Stay tuned!

I’m finally doing something this weekend that I had promised Katie I would do for her during her fight with DIPG! She loved the idea and I just wish I had done it while she was with me. More details to follow. Stay tuned!



Katherine’s Still Here

Katherine’s Still Here.
I have met a child with so much love and laughter in her smile, that she would infuse this same emotion into thousands of complete strangers, who are now family, they know me, they feel her, like I feel her.

I have attended to a child’s needs so fixedly, as if I could save her with my care and love, thinking that if I kept going, even when it felt impossible, maybe she would keep going, maybe my attention to detail could save her, she was so strong this child, she was so whole.

I have loved a child so openly, and wholeheartedly, in an attempt to soak it all in, I was going to feel everything she was, and remember it, knowing my child would be gone soon meant I had to try harder to soak it all in, there was no end date, we said goodbye every day, in little ways.

I have hugged someone so deeply, with the hope of bringing her back to life, as she took her last breath, cradling her, crying, pleading for a chance to go back to do this again, because next time I will do it better, I won’t make so many mistakes, saying sorry, so many sorrys to my child.

I’ve allowed someone to permeate me so much, that watching her die in my arms, in such a horrible traumatic way, has permanently ruined my sense of (well) being, I am not me anymore, I am lying when I say I am, and when you see me as I was, I am acting, I am dead inside, I need her to live again.

I currently sit outside my own body, subconsciously, and watch my mind completely lose itself in incomprehensible ways, irrationality, resentment, fear, hell, the thoughts…

I have refused to believe she is gone, my mind tells me in so many ways that she is coming back, scenarios in my dreams of her being lost, or kidnapped, she will be back soon, my mind can’t process this.

I come back to myself I tell myself its real, this is real, but my brain always wins. My brain knows something I don’t. she’s not gone, she’s still here it says, but where, there are no signs yet, and I want one.
A sign would make holding her things alone, on a Wednesday morning, crying, so much better.