Katherine was diagnosed on my birthday, June 2, 2015, with DIPG (Diffuse Intrinsic Pontine Glioma). It is a tumor in the interior of her brain stem, in the center of her head. It’s unreachable, and its incurable. She is 4 months into the 9 month average survival rate, and this survival rate isn’t that far of a stretch. She has a 1% chance of living beyond 1.5 years. We are hoping that she is the one survivor that helps doctors cure this for all DIPG and Brain Cancer patients. We fight for Katie daily with a tough regimented Keto diet, acupuncture, mushroom supplements, CBD/THC derivatives, herbal and fruit supplements, Avastin (blood vessel growth preventer), and soon we are starting a new form of drug called Panobinostat (a form of Chemo). Katie’s been through a lot, her spirit is sort of broken, but she fights and she’s tough. She doesn’t enjoy things like she used to. In fact, she doesn’t like to be out much at all. It makes her nervous and gives her anxiety, which was already a problem for my child since birth. She does MRI, radiation, Port-A-Cath accessing, CT scans, EKGs, with no anesthesia or complaining, and she takes pills unlike most 6 year olds! Tough is an understatement! Katie has 3 wishes, one is to not be sick, 2 is for everyone to have a pet to love, and three is: she can’t remember but she knows she has 3. She is smart, beyond belief. She is 6 and loves to do small, complicated Lego scene kits and 1000 piece puzzles (with help) and is completely bored with the younger age (her age) stuff. She is beautiful and lovable and has always been referred to as having an “old soul,” as if she’s looking right through you. She is a perfectionist, as all of her teachers know. She doesn’t understand what is going on with her, so we try to give her as much information as we can, without telling her too much, and we also try to live life to the fullest in between work and other obligations. Nothing is free, and we have to work to pay these medical bills, travel, parking, extra equipment she needs, and most of her meds. Financially that’s hard, and mentally it’s exhausting, but we must fight for her. All she has is us!
We are asking that people share her story and her fight with DIPG! Get the word out, talk about this, get upset, wonder, question this disease . . . so that other parents and kids, when told that they have DIPG and a 9 month survival rate, are not stuck with no hope as we’ve been given, and are not required to look beyond for our own hope. Katie will lose her sight, she will lose her hearing, feeling, body movement, ability to swallow and control her bodily fluids. However, while all of this is happening, she will still think and feel like a 6 year old child. She will be in trapped in a black chasm of nothingness, wondering why, scared to death and unable to sense what’s around her. Her mind won’t die, but her body will, slowly. This is not easy, it’s painful and will take a lot of strength on her part and ours to manage. I ask her daily about her likes and dislikes, almost in an urgent matter, in between other things I blurt out questions, because one day she won’t be able to answer me anymore, and that thought is terrifying. Imagine that, and then imagine the lack of funding. For every dollar donated to cancer research through the NCI (as an example), children’s cancer gets 4%. That’s 4 pennies. And to top it off, the biggest killer of children with disease in the US, even bigger the leukemia, which is Brain Cancer, gets 1%. One penny… And Katie’s cancer, DIPG, the “shortest stick” of cancers for kids, gets even less than that. Ridiculous right… It’s the biggest killer, so how can this be? This not only affects Katherine, it affects hundreds of warriors who are rooting for her, and hoping for a better outcome. She has sisters, aunts, uncles, cousins, grandparents, and countless friends who are left to wonder why, and hurt along with us. How can we not have funding for this, to help parents like us. So please spread the word, spread her story, share her ups and downs so others know. We had never even heard of DIPG, until we received the bad news in a hospital one night at 1 AM, and everyone should know about this disease.
Please share her story.
Thank you for listening to me.
Jaime King – #MommaTheBrave
You can learn more about Katherine on her Facebook Page, Katherine the Brave.