Our daughter Katherine was given a zero percent chance of survival. She was sent home directly after diagnosis and put on hospice the same day. As others were fighting with hope, she was given none. And we had to plead and beg for any support or medicine that would give her more time. Not a cure. Just more time. And through it all, she handled it with grace and integrity. This is why we called her Katherine the Brave. I miss you sweet Katherine. We will forever share your story.
Please help us share her story.
This is Katherine showing us her dislike of Monday’s. At the time, I agreed with her. She was such a silly child. Constantly trying to make us laugh. This was 2 months before diagnosis. 2 months before our world was shattered. I imagine she started noticing little differences in her sense of balance, sight and touch. Dizziness, and possibly headaches. She never said a word. Never complained. She was such a brave child. Always had been. To the very end she cared more about others, than herself. I wish I could be as brave as that child. I wish everyone could be as brave as her actually. It would make a difference for humanity that the world could not comprehend. I guess Monday’s ARE very much like this. Miss you mongrel. So badly today. #IHateMondaysToo #katherinethebrave #dipg
Somebody told me the other day that it’s been scientifically proven that it takes about 3 to 6 months for someone who has experienced a loss of somebody they love to start healing. I just smiled and thought of all of the other people that have said that to me. It’s been 10 months since Katherine has passed and I still can’t breathe when I think about my child who is no longer here. So, I just disproved that fact, and it’s going into the mental BS bank where all of the other scientifically proven facts, and unsolicited advice, are stored. I miss her more now than I did in the first 3 to 6 months. I don’t think about normal things like were those wrinkles, I’m dreading this meeting, wish I didn’t have to drive in this traffic, how do I make an excuse to avoid that party, I should change up dinner and make something else tonight. None of that matters anymore everything I do is constantly and utterly shadowed by June 6, 2016. As a parent of a child who has passed away your whole world is surrounded by the events leading up to and the day of your child’s death. Anything you do that even gives you the microscopic hint of joy is followed by intense guilt and then sadness. How could somebody get over that, it’s simply impossible, as it should be. If guilt and sadness is all you have, then you are actually better than most really… The guilt and sadness are not shocking to me, although I know it will be to most of you. What we’ve gone through is unimaginable, and I don’t wish it or this pain on anybody. Our lives are forever affected. Every decision that we make is paled by the memories of our daughter who is no longer here. Watching my husband come out of his job crying yesterday because a memory of Katherine ruined the presentation in front of all of his coworkers has opened my eyes to this theory. It happens to me all the time, but I’m a mother and this is expected. To watch a grown man struggle in the same manner just solidified how frail we have become as humans after this tragedy. I’ve been sitting here, as most of us do after something like this and waiting. Each day waiting for it to get easier. Waiting for each anniversary to pass by, so maybe the next one won’t be as difficult. But I am mistaken, each anniversary gets harder, and more complicated. Each anniversary means I am farther away from my life and experience with Katherine. That is why this is so much harder as each day passes, and why it gets worse. In a way I look to the future with a grimace and pain, and not joy. There is a silver lining here, which I’ve accepted. I also look to the future with more understanding and a deeper appreciation for life and family in general. I just wish that it didn’t take the death of my daughter Katherine to make me realize it. Regardless of my empathy for life and heroism before Katherine’s death, nothing compares to it now. I hope that by following Katherine story, and watching her go through the struggle on to death, that you were also changed. That you care more deeply and are aware that this cancer with a 0% survival rate exists, and that it angers you enough to be part of the change. Today is the day, make the change. For Katherine. #KatherineTheBrave #DIPG
The time Katie decided her feet deserved a pillow… 🙂 Although this made me cry, seeing this made me smile and remember that at one time I got to cherish and squeeze those sweet little toes. What a privilege that was. I miss you Katherine. 3/25/2010
I received the bracelet I purchased today for the DIPG fundraiser and I’m wearing it proud. 🙂 Thank you so much! #KatherineTheBraveDIPGFundraiser DIPG Fundraiser
I saw you today Katherine. I saw you in your cousins faces, dressed in princess gowns, giggling and smiling. I saw your joy in them. I saw you in the celebration of another year of your cousins life. I saw you in our family gathering, everywhere. I stared frozen, hurting, and I cried. I wish I could say that seeing you in them made me happy. That I wasn’t dying inside when I felt you everywhere. But I can’t… You my sweet Katherine were the absolute best cousin ever. You cared so much about everyone elses joy. I drove home, sad and quiet, and I saw the green hills, and you in them. The cool breeze blowing the tall green grass reminded me of Easter, and us, and you… Stuck in traffic I just stared up there at all that green cascading the entire sky line, and my first instinct was to say, “Girls look! Isn’t it so pretty?!” It was so important to me that you girls saw the beauty in things, even to the point of exhaustion sometimes. You would respond, still being so young, similarly to how your sisters would respond at your age, “Yes, it’s beautiful, can we go see it… There’s horses up there. Look at the horses!” Then I remember, and I’m devastated all over again. I remember June 6th. Your last breath. You really are gone, and there is a huge gaping hole in our lives now. And I’m broken again. Driving. Sad. Silent.
I miss you baby. And I’m so incredibly sorry that we could not save you, and keep you here with us. I am sad that you could not be there when we sat around and talked today, at your families party, and watched as your cousin blew out his candles. You deserved to be here. Not this. This is not ok. It will never be ok.
I just received a message from Eden at Babble, and she shared with me that this story about my daughter has received some major traffic on their website. I had a feeling this was the case because I’ve also received many, many messages from new Katherine supporters (many whom I’ve not had the ability to respond to yet, sorry about that) who consistently express their concern and shock that a cancer like this exists in this day and age. I was shocked too when we were told on the day Katherine was diagnosed. I don’t want any other family to go through that experience. The huge response was our goal when we worked on it, and people are listening. So, thank you to everyone for sharing this story. Although I may not have the time to facilitate a foundation, or raise hundreds of thousands of dollars, I can help other foundations do this by spreading awareness, and the truth on Katherine’s page. She deserved to be heard, and she is a voice for #DIPG that cannot be reckoned with!
Please keep sharing this article, #PleaseShareKatherinesStory, and make others aware. Ask the programs you work with, and the pages you manage, to share too. I’m ready for more messages and questions about my daughters struggle.
I’m sitting in front of the building where I took Katherine in May of 2015. The same place where I was told that her symptoms were normal for low iron and sent on my way. The first of 3 more discussions with doctors before I walked her into a hospital myself. I have an appointment here. To talk about my health. My health that faded after I found out my daughter actually had brain cancer and would die within a few months. I guess I should walk in and let them know how they failed my daughter. How much time was lost by what they didn’t see. How they misdiagnosed my daughter with a cop-out diagnosis that even I questioned. How they weren’t concerned enough to pay attention to the little things that didn’t make sense. The things I questioned curiously. The things they should have been questionable about as medical professionals. If I had one ounce of Katherine’s bravery I would go in with words blazing and stories of the nightmare we’ve lived for a year. But I won’t. I will continue to sit here, and cry. Sob. Stare. And eventually I’ll drive away. Again. I’ll just pay the no show. I guess I’m not brave enough. Sorry Katherine.
You didn’t tell your child she way dying? Isn’t that sort of selfish?”
I remember the day I came to the realization that Katherine was going to die. They said she would. You read the statistics, she would. But you never truly believe it until they refuse to fight for her anymore. Until they look you square in the eye, with pity, and tell you that you need to stop for her sake. It hit me unlike anything I’ve ever felt. I walked out of that doctors office, Katie in tow, holding her hand, trying to get her and I as far away from that place as possible. She was trying so very hard to keep up. I did not realize that I was walking so fast. Staring forward in complete and utter agony and defeat. Holding back the tears, thinking… How am I going to tell this 7 year old that she is going to die? That she is going to leave this earth before me, and her daddy, and sisters. That this isn’t going to happen smoothly. She will suffer and cry. We will be there, crying too, but there will be nothing that we can do. The two people, mommy and daddy, who are supposed to protect her will not be able to.
I drove and decided I was going to do something that I swore I was going to do from day one. I remember receiving this diagnosis and insisting to my husband, family and friends that I would never be selfish enough to let my child die and not tell her. Age matters not! She should know. It’s a human right! So months passed, and we fought, and we lost… and here we were. Defeated. DIPG won. Time to buck up and keep my promise. Right? So I went to a therapist. They would surely be able to help me say the right words. After two, I realized that they had none. Then I called her oncologist and she begrudgingly sent her to a therapist. One specialized in children with cancer. She would surely be able to evaluate her and give me some insight into how to tell my child this awful news. They would get to know her and give me all of the answers I needed. Or maybe even some direction. But they could not.
Their advice… you will know. Or you won’t. There is no right answer. Ya, we know. We’ve dealt with that a lot lately. No one seems to have answers for us. Not old medicine. Not western medicine. Not even mommy and daddy.
Time went on, and we slowly realized that they were right, those therapists. We would know. Which is why it never came up. Because Katherine already knew. I could tell. I could see it in her face and hear hear it in her voice. She was dying, and she felt it. She cried a lot, just tears to herself. She talked a lot about God and heaven, suddenly, with no encouragement from us. She knew, and that may possibly be why this was so much harder for us all equally. She didn’t speak of it, because she was struggling with the same question we were. How to talk about it. How to not hurt us. Her slow death was an unspoken actual truth, in a world full of harsh realities that seemed like an awful dream. The stuff of nightmares, come to life. In our home. To our family.
Not telling our child ended up being harder then telling her. There is no human right when it comes to pediatric cancer. There is no answer that will correct the bad, to soften the good. There is only her. What was best for her. And what was best for my daughter was to leave it unspoken, but know it was still there. My experienced advice to other #DIPG parents is, “You will know… Or you won’t. And that’s ok”
I’m so sorry sweet baby. I miss you terribly and if I had another chance but had to endure this suffering, I’d do it all over again, every year for the rest of my life. Just to see your face, and hug you one more time. Love you Mongrel. – Mommy
#katherinethebrave #dipg #lovesandkisses #seeyounexttime #rainbowsocks #rainbowsherbet