Katherine was diagnosed on my birthday, June 2, 2015, with DIPG. She started to stumble on movement changes. She was seeing double and had hearing loss. She was sleeping extremely large amounts of the day, and started to become feverish for single days at a time, on and off, every other day. I took her to an eye doctor, who immediately told me that she was seeing perfectly fine, but had double vision and she felt that this was a problem in the brain. She sent me to Katie’s doctor with some details, and immediately she was admonished. 3rd opinion, admonished. Finally the 4th time I saw a doctor and the same thing was being said, I had had enough. I drove my daughter into the ER at CHOC, and here we are. Katie had a “large” mass on her brain stem, and it was so large that they decided to not biopsy and put her immediately into radiation.
She is 4.5 months into the 9 month average survival rate. She is doing extremely well, however we have to face reality, that this disease has a 0% survival rate on record. As well, we see many doctors, many opinions are given, we talk to doctors all the way from Stanford, Weill Cornell, City of Hope, CHLA, and we will continue to speak to doctors, but it all ends with one general idea, make her comfortable, and consider palliative (hospice) care. It’s heartbreaking, as she deserves more than no hope. I walk away every time feeling hopeless and trying so darn hard to focus on the positive side of every meeting. I share those thoughts often, although I’m sure most can see through them. I’ve come to admit that this family suffers from a form of PTSD since Katie’s diagnosis. The girls speak to counselors at the school, and through our insurance. I’m trying to keep them from being hit with the effects of this disease for the rest of their life and it taking a tragic turn on their psyche. No family should go through this, especially no child(ren).
We still fight for Katie daily with a tough regimented Keto diet, acupuncture, oils, mushroom supplements, CBD/THC derivatives, Avastin (blood vessel growth preventer), and soon we are starting a new drug called Panobinostat (a form of Chemo).
Katie’s been through a lot, her spirit is sort of broken, and experiences extreme emotional disassociation. 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! Calling her tough is an understatement! She is however most comfortable in her home, with mom and dad and nana, her two sisters Tori (17) and Alissa (16). She still fights and she’s tough regardless of her environment though, as she often is required to be outside of it for family, friends, events, hospital visits, etc. It’s getting better, every day.
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 “baby” stuff. She is beautiful and lovable and has always been referred to as having an “old soul,” as if she was looking right through you. She doesn’t understand what is going on with her, so we try to give her as much information as we can and are also trying to live life to the fullest in between work and other obligations. 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 have had to look beyond for our own hope. 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. This situation should never be.
You can learn more about Katherine on her Facebook Page, https://www.facebook.com/KatherineTheBrave.
Thank you, Katherine’s mother, Jaime