Katie Marie, you deserve to live sweet child. You deserve to make it to double digits. You deserve a first dance, first job. You deserve to fill out college applications, have a child of your own, with no fear of something in your head trying to kill you, slowly. We all deserve that chance. Every parent of a child with cancer deserves to be given a percentage of survival as well. A chance to fight to be in the percent that survives. DIPG takes that percentage away and gives us nothing. 0%.
Medical bed, wheel chair, car seat, funeral, grave, the aftermath. Realities, I do not want to think of, but have to in this position. I’m devastated every time I think of it. I watch other families in this reality and see them crushed by the realness of it all. I was talking to her dad about how she was emotional when I sent her to school, and in the middle of it I started balling thinking about how chubby and cute and cuddly she was as a kid. How I wish I could go back and hug her more. She was such a good baby. And still does all she can to make mom and dad happy. I guess I should consider myself lucky that I can prepare. I hate saying lucky, because again it implies that we haven’t worked hard, and will have more time, deservedly.
After sitting here discussing palliative care and hospice with the Oncologists and staff, I am a complete crying, hot mess. I feel broken, shattered, devastated, bombarded, ran through the wringer. All words that in NO WAY express the gravity of my true feelings, but what other words are there? I know this is so important, however for me it was not easy, I didn’t plan it to be so soon, and I’m still in la la land regarding her diagnosis apparently. I feel like a lost soul, wandering, giving up. So, now that I’ve let my true feelings out, I wanted to share the positive aspects of this meeting. Yes, there’s some positive for Katie. At least there’s that. There are things that we want to create for my child immediately, such as comfort, memories, peace, happiness. Things that we will use to make this a reality for her, alternative pain meds, therapies, home care, and some serious attitude changes, across the board. It will be done. I lost a whole lot of time hoping for a different result, expecting a different result, because we tried so hard, and that should matter right? Even if it did, I don’t feel like it did. Maybe because I’m a mom I feel this way. Maybe that will change with time. Maybe a lot of things, right… Let’s hope that the more I pull good memories out of my hat, by force, the easier this process will be. Sad memories will hopefully fade. Maybe good memories won’t fade as much.
I know my child, and if she was old enough to tell me what she wanted, knowing her circumstances, she would ask me to keep trying, and not give up. Not just yet. She would ask me to not take away her quality of life as well. Not to dope her up with meds and therapies that may hurt her physically, and mentally, or incapacitate her. She would also want us to make this time memorable, while she’s fighting. So this is what we will do. I am so completely broken right now. I am devastated. This past 6 months isn’t enough. I wasted so much time doing things that were not important, waiting for a progressing tumor, when I shouldn’t have been. Oh the regret…. I have got to learn to get past this, and now, before I lose more time. I am not going to waste any more time. I just can’t right now.