Finally an update:
We gave away a girls bike today. Ya… We were cleaning out our shed and David lined it up with our beach cruisers and I said set it over there, we can give it to Kyleigh. My sweet niece. So he did. Unaware of what we were doing. I was unaware too. The day goes along. Today my sister says are you giving that away. Ya… She takes it to my niece. As she’s pulling away I look at David and say, we just gave away a bike that was given to us and intended for Katie when she grew up. What in the world is wrong with us?
Isn’t that insane? How on earth could we subconsciously do this. Why would anyone do something so forward thinking. Their child’s still alive. Well, I’ll tell you why, when your child is diagnosed with DIPG, you are given NO survival rate. We walked out of that hospital on June 5th last year with so much trauma and denial, but the reality is always there. Eating away at you. So you prepare. We’ve been planning for Katherine’s funeral for 12 months this June 2nd. Imagine planning your child’s death for 12 months. In your head. You don’t actually plan it, until it progresses, but mentally and emotionally every time you look at your child you know life without them will be horrible, you dwell on the survival rate, and your living with that cruel fate until the tumor wins. So it’s hard not to suffer with the impending future.
No matter how hard we try to save her, at this time, and with these circumstances, this DIPG tumor will win unless things change. Katherine is the strongest person I know and she is struggling to exist. Anything that could rip the heart and soul out of such a precious child, with such a beautiful old soul, is the biggest, strongest, most evil thing which western or natural medicine can not beat. It doesn’t matter if its days, months, weeks, years, DIPG will win until something changes. When are we going to fix this?
Recent symptoms: Katie dropped a pea from her mouth today, it landed on her chest. She couldn’t grab it with her hand so she tried to use her mouth. I cried. She can’t move her legs and arms. They are stiff and hallow. Almost as if she has strength to push back, but it’s misleading. She doesn’t even feel the touch. Hospice said this is disease progression tonight. I cried.
After talking to hospice and our therapist, I have finally relented and brought the fact that she was sick up to Katherine directly. I asked her how she felt and if she wondered what’s wrong. I urged her to talk to me. Do you have anything you want to ask me. Do you feel like you want to say something. I didn’t push, just asked and waited doing other things, but she did have questions… “I want to ask about me being sick. Im a bad kid.” She cried. I died. Mom died. She repeated it over and over no matter how many positive stories we told her about being such a wonderful person.
My patience is wearing thin. I’m wondering how we are still moving. Please understand that we are not seeing as many people as we normally do. It’s just something we have to do right now. Thank you all for your support.